JPouch

Interesting information. I have had a j-pouch for 5 years now and I have not narrowed down anything. I am just beginning to write down what I eat, how much and how I feel throughout the day so I can find out what I should or should not eat. I hope that I will be able to narrow down my BM as low as yours because I always feel I am in the restroom and also have the gas problem as you do which is difficult in public. Anyone wanting to chat can e-mail me at BelindaKurtz@gmail.com I will be more than welcome to answer any questions also.

I have had a jpouch for 7 years and I still use the bathroom 4-8 times a day I don't know if I am eating the wrong things of not. Any suggestions

The foods on my list are what work for me. Although there are general rules of thumb (avoid carbonation, gassy foods, etc), each person has their own quirks to their system that makes their optimal diet unique. You can start off with my diet and try changing things around and take notes each day on what you eat and how you feel/how many times you go. Over time you will limit things down.

Interesting page...hubby has procolectomy (sic) in a week....liked your food list
denise

I had J-pouch one and half month. I started your list. Main complain is watery motion 7-8 times, very hard to control because it's so fluidy. And the rawness of the back skin is very annoying

I have J-pouch 3years.
"That being said, do not drink water at night." water never made me go to toilet. If you drink tomato juice then yes.

Iam going to toilet 3-6 times a day. I sleep all night without going to toilet.

i have had my j pouch for 15 years now, and im still learning how it works sometimes.

i love all of this information! everyone is so different. ive had my j-pouch for just under a year and it has been by far, the best choice for me. i have had a wonderful experience with very few problems. you just have to listen to your body!! ps. i can still toot if i lay down!! and your bm's will be thicker over time, i take 6-8 immodium day faithfully! i should buy stock!

is it safe to take that many immodium?

You know, I remember coming across a programming, game, or interactive site of yours in the last few years. Maybe you used the same logo. Now I stumble across you again with these issues! I've had recurrent IBS so I follow anything in this line so I'll know what I might eventually face. You've done really well.

Yea this site has been up since 2004 :)

I've just had a total colectomy and still have to go for the J-pouch. Thanks for some tips...

Thanks. Didnt know where to look. Page made me know im not the only one.

I had my j-pouch surgery when i was 16 im now 21 and i some what regret having it done. At the time there was no other choice, but it seems having 8 bm's a day is more than an inconvience especially when im at work and canèt just step away to go to the restroom or on a day trip where their is no restroom for miles it can get really embarrassing i've tried a number of medications right now im on lomotil but nothing seems to help any suggestions?

Try not to eat foods that could cause gas, most of the time when I have to go it's because of that. I haven't taken any medication since the surgery but it seems like lomotil is like a glorified immodium, I'm not sure that's going to help since the problem isn't from the same issues that normally cause diarrhea; it's from the lack of a proper water filtering system (the large intestine). Of course that's not to say you shouldn't drink water because that would lead to a much worse problem than going 8 times a day. In short, if it's not working, don't take it; there's no need to make your life more complicated than it needs to be. Other than that, I have written above pretty much everything I've tried and know about.

I have had the Jpouch for 5 years now and shit all day and all night. Infact, I take opium tincture 3x a day and soon will be a nurse with a bachelor's degree next year!! I notice that exercise helps pass a formed stool along with the use of psyllium occasionally. I have a very high output and have had pouchitis since the surgery. I am striving to become an ostomy/wound nurse in the profession to help all of the people with Colitis, Chron's and surgery. The pouch can leak and get very bothersome on your belly. Petroleum jelly for your chaffing and huggies wipes are a must at the toilet side. Wonderful page you've put up.

I live in Australia and can not find a decent website for people with pouches or bags in Australia. I have had jpouch for 4 years after having colitis for too long. I now suffer chronic pouchitis after having a perfectly working pouch for about 3 years. I take the imodium - about 3 a day and am also regularly on antibiotics and VSL3 but find the ABs arent as effective as they once were. I havent really looked into my diet, but its only in the last 6 months that I think diet is starting to affect me more and more. The pouchitis is worse then colitis symptoms in my opinion. Toilet visits are endless, and then there is the losing weight and nausea, so bad, and its so hard to put anything back in to you to get your strength back, you get really dehydrated, and then the vomiting is endless. I have been hospitalised several times for this, I sometimes regret having this op. I read about people who are having a wonderful life, and I wonder what I did wrong, why am I in the 10% of the nation that gets it chronically. I am seriously considering having the ileostomy bag permanently because I've just had it I'm at wits end, I want to live my life without constant pain and nausea and bowel problems. Can anyone tell me if they have had to take the last option available and have the bag for good? I dont know what to do anymore.

The most common causes of pouchitis for me are diet and stress. Usually <u>being stressed out triggers it</u> when my diet also happens to not be great at the same time or I am not being healthy in general like not exercising etc. Of course once you get yourself into the loop of stress, pouchitis, unhealthiness, hospital stays, etc it becomes a hard thing to break out of because they all feed into each other.<br>
One thing that disturbs me especially about your case however is that you are experiencing nausea. I never experience nausea as a symptom of pouchitis. My symptoms are usually <b>urgency, pain, loosing weight and occasionally blood</b>. I did experience nausea though when I had a <b>stomach ulcer</b> (the doctors insisted at the time that I had Chrons but I pressed them to look again and they eventually found a duodenal ulcer instead). Have you been tested for that?

Hi, great comments - it is so hard to find information about a good diet after J pouch surgery. Thank you.
I know diet and stress were the biggest factors of my disease, changing these has made me feel the healthiest I ever have. October 22nd 2009.
PRE SURGERY:
16 yr old girl formally diagnosed with UC in 2001. I had loose runny stools, flatulance, bleeding, cramping, 4 hospitialisations, cortisone, sulfa medications, worked 50-60 hours a week, poor love relationship, poor diet (microwave dinners, take out, Macdonalds, lots of white bread and milk with prepackaged cereals + tonnes of sugary snacks) and regular marajuhana use.
In 2003 I was hospitialised.
Option 1. Begin Imuran (an immunosuppresent medication given to organ transplant patients) or
Option 2. Total colectomy.
I opted for the Imuran - no effect, I was too sick by this time.
My parents (mother's side has family history) convinced me to have a J pouch constructed.
4 Surgeries over the next 2 years with temp. colostomy bag, I experienced 1 blockage due to adheasions (which I feel was from the low fibre diet the Dr's prescribed me).
After the blockage and research into fibre discovering why it is important part of a healthy functioning digestive tract, I began to take my health seriously.
Ate vegetables (cauliflower, brocolli, cabbage, carrot, water chestnut, red capsicum - but not green) in the form of stirfrys, chewing each mouthful 30-40 times (as colon's don't have teeth).
Removed all dairy and gluten products.
Onions were out for me as well due to the gas production.
I had massive improvement in the consistancy of my stools, my stoma did swell at times and get bruised as the size hole I had cut that morning was sometimes too close fitting.
POST SURGERY:
Reversal complete in Oct 2005 and I have continued becoming the healthiest happiest person I can. I never smoke marajuhana, drink alcohol, coffee, eat processed sugar or pre packaged meals or take medications. I am in a loving relationship now and work part-time (25hrs a week).
I eat most of my vegetables raw or lightly steamed, take phytonutrients, mineral and vitamin supplements, drink 2-3L of filtered water a day (not including herbal tea), eat plenty of fresh fruit, small amounts of nuts, seeds and legumes everyday with no problems. I do eat grains now but only organic whole grains and not more than 3 x week. Eggs are fine (smelly gas but no cramping) as is raw milk (organic unpasturised and non-homogonised) and organic goat's cheese occasionally but no more than 3x week.
BIGGEST CHANGE:
Best aid for thickening my stool, decreasing frequency and passing gas without having to sit on the toilet was Psyillum Husk (take 2 x day). I recently began adding Slippery Elm powder as my Naturopath advised it is more gentle and promotes mucous along the digestive lining without being as abrasive as Psyillum Husks and probiotics.

I hope you all find a diet that works for you, going organic, becoming educated about health and food, ignoring the Dr and eliminating stress was the best thing I did for myself.

Sorry - probiotics are not abrasive, I ment that I also take them to prevent Pouchitis from occuring.

ibdcrohns.about.com/od/pelvicpouch/f/pouchitis.htm

Hi:
I haven't accessed a chat/help site for years. My ostomy takedown and correction was completed ...a long time ago..in 1994.
So I have a bit of history...the whole procedure at the time was a bit complicated maybe because the initial surgeon attempted to do it all in one stage....his first kick-at-the-cat...and I was in more agony before than previously.....after finding an alternate surgeon (because the first one told me I should just have a permanent ileostomy and get used to it), I had corrective surgery (the second surgeon's thinking was the pouch was initially placed too high in my abdomen) and recovered to have some degree of success...On good days(24 hr period) I still need to visit the washroom as many as 10 times daily...most vists occur at night...for some reason...being horizontol and no activity..my pouch is ineffecive....I don't think I've slept more than 4 hours consecutevly in 15 years.....and this is with the assistance of a high dosage of coedine contin which moderates the bowel/pouch function....to be honest...I probably early on became dependent on this drug when I was having more problems....that said....I was given a new lease on life after all the surgical errors were sorted out.....I returned to work as a carpenter and although over the years there have been many inconveniences (maybe too many for some) I have been able to succeed at a highly physical occupation...in conditions that may have been considered unusual to most...for the larger balance of my life I've worked in the Canadian Arctic...in severe conditions...for extensive periods...as many as 12 hours per day.....I've just returned from a 6 month contract at the Kandahar Airfield in Afghanastan working in 55 degree celsius....that's over 120 in Farenheit measure......and was able to overcome electrolyte depletion on a regular basis........so why am I writing??????....from the beginning I've had episodes which were extremely uncomfortable....after eating mushrooms.....I knew that they were somewhat of a problem prior to the jpouch....while I had the ileostomy when I ate mushrooms I could literally feel them pop out whole (to whatever size I had chewed them to) out of my abdomen into my appliance....so when I had the first occurence after the arrival of the jpouch...no big stretch to what it was....I was careless and at that time it was agonizing....I didn't think I would survive and was 10 seconds from calling the ambulance before everything cut loose...an obvious major blockage...later I had other occurences...most not as bad....you might say, "well, doesn't he ever learn?"....but most of the time I knew what I was getting into and either was prepared to pay for it....such as eating tomatoes....and/or onion laced foods....and other times I would try to mitigate the future events...for example...chewing my mushrooms well.....but in the last year or so I've had a few episodes I feel are connected to mushrooms.....I have the sensation of an almost complete blockage without the accompanying extreme pain.....but I begin to manufacture progressively more watery stools with greater frequency coupled with intense constipation and manufacture of gas.....I obviously need to expel this gas through as sit down and a loud farting musical (out of tune) anouncement...in conjunction with the watery defecation......as well I burp continuously with the taste of rotten eggs in my mouth although I haven't eaten any......all very uncomfortable......and this will usually last a week or so....
I'm not sure what is going on but I think that either I have a mushroom blockage that produces a major amount of gas as it rots away....or I am just developing some sort of alergy to mushrooms....and not all mushroom species, because at times I will eat other mushrooms in soup or whatever with no ill effects........so given that this is my first visit to any help site in years, I don't know if I can expect to find the most knowledgable contributor to respond but I'll keep my fingers crossed and at the same time I watch, I will help anyone else I can......as bad as this all might sound....I am grateful I survived a very virulent disease..and have lived already another 18 years....I am happily married with a beautiful 14 year old daughter....still any improvement on what has been the problem the last year would be great....thanks so much for your responses.....this is the best site I've seen towards j pouch interraction......all the best....

Having to frequent the bathroom more at night is the same with me, I think it's because I am more relaxed or maybe it's because of the horizontal thing. I also always have to go after eating because the whole GI tract wakes up when you eat. That's great you are able to go to so many places and not let the pouch get to you.

I'm not sure what's going on with the mushroom breath but mushrooms are usually poorly tolerated with jpouch people but I've never heard of them causing gas. Are you eating anything else with the mushrooms or always cooking them a certain way with certain seasonings/oils? You may also have an allergy to that species of mushroom, it's not unheard of.

Thanks for the compliment about the site.
- Will

Thanks for your response Will..I've never compared notes of night time frequency before and your explanation pretty much concurs with my thinking...about mushroom though, my theory concerning them is that my digestive acids literally don't touch them....at least some species in any case....in retrospect I would say those would be the "common mushroom" available to us here in Canada in the produce section....later I will find the species name but again these would be the common species which come in white or brown skin colors and although usually consistent (maybe ping pong ball size) can range from the size of marble to the size of a small fist...
these are the ones I believe to be at least one of those types which could give me problems....there may be others....and the most normal reason for my episodes would probably be a result of swallowing them at too large a stage when they might be contained in a soup/sauce/casserole.....I would like to say that I'm a diligent chewer but I'm not, and while when I am eating them as I side dish I would more likely be careful....I probably blow it when they are contained in a recipe...
but I do know as mentioned before, my body just does not break them down..as above, when I was connected to my appliance between procedure....I could feel the results (collecting as little chunks of rubber)by kneading my appliance.......I just wish to correct my chewing inattention there existed some way to flush or dissolve the mushroom chunk which causes my blockage...but more than likely I just have to suck it up and wait until it comes loose or rots away.......so thanks again for your site and allowing me to use the space to ramble on......

I have the same Problem, Just like everyone else, the bathroom thing is the worst. In the bathroom 8-12 a day gets to be hard. When you want to go out for few hours with family or even at work. They tried just about every pill, IV, Foods, Vit. Drinks. Nothing helping yet. Just starting this week taking- Slippery Elm Bark, Super Digestive Enzymes, and Probiotic Acidophilus. So we will find out if this helps. I really hope so...... Anyone have any info or can help anyway please email me. r.riehl@comcast.net Subject- Colon J Pouch. Thank You Everyone for help...

Hi, I am 3 weeks post-op (one-step j pouch) for slow transit (chronic constipation). I have had significant rectal pain (no abcsess, fistula, obstruction) which has turned out to be a function, or lackthereof of my sphincter muscles. MRI shows my pouch is fuller than usual. Have similar issues w relieving gas...end up not releasing in most cases (tense up). I don't want to take colase to relieve and am still on soft foods at this point. Dr recommended walking (which I have been) and adjusting way I sit on toilet. I am also using a nitroglycerin compound rectally. has anyone experienced similar issues w muscular dysfunction? Any help is greatly appreciated!!

Your pain is probably being caused by the gas being stuck in there. Have you been eating many gassy foods? Also the muscles will heal and strengthen with time, the vast majority of people have really weak sphincter muscles post-op.

Hi everyone! First time I find a site to share info and connect with great people like all of you!Have had a J-Pouch for 6 years, one episode of pochitis 4 years ago which healed with 5 day hospitalization, antibiotics and pumping of stomack with tube down my nose, clear liquid diet for a few days and then started implementing foods slowly. Was super healthy for past 4 years, taking probiotics, paying attention to my nutrition, taking nutritional supplementation, exercising 3 times a week and working part time and paying attention to how I managed stress oh and also taking omega 3's fish oil. This last year I went completley out of balance with my life. My business doubled which was a great thing but I didn;t have enough leaders trained to help me and I ended working avg of 15 hour days Monday to Sunday for 6 months and got away from going to the gym,,,,,having triple the stress from the business plus family mother and brother serious issues which added more stress, strated eating junk, to much red meat,cheetos, chocolates, ice cream, cookies, chili, lots of cheese, greasy food, fast food, stoped taking my supplements and vitamins and probiotics and omegas;s, skipping my meals,having emotional issues and there you have it recepie for disastr, My body was pushed beyond it;s capasity, I caught a bad case of broncotis and the pouchitis I've been down in bed for 2 months and on my way back up to my dicipline. It's bed time I will share more on how I;m getting out of this one without doctors!!!It can be done! Stress management is the main killer and the nutrition, Will connect again soon! Best of luck to all of you! Blessings!

Hey Will, I ended up having EXTREME pain in my right side and went to gastro. Had emergency CT and endoscopy to remove gas (said my intestines were dilated...also had bleeding). Even after they removed gas/stool I still had pain (took two Dulcolax and suppository) which seemed to help. It has been a week and again my stomach is distended and hard. Is there anything that you can recommend to increase output x-laxatives? I have spent seven years dealing with constipation, liquid diets, TONS of laxatives and suppositories and am afraid that I will continue to in the future. Really appreciate your help!

I've never had a problem with being constipated after the Jpouch surgery; that is rather odd. I have had problem with gas building up however which is why gassy foods are on my avoid list. I'm not really sure what laxatives to recommend but I wish the best for you.

hi,
i have had j pouch for 15 years. I dont stick to the diet like i should but try. I have been taking 6 lomotil tablets per day. Also taking a tablespoon of fiber laxative mixed with water for regularity 3 times per day. Wondering why noone else on here is doing the same.

Hey. Im due my take down in 2 days and reading the blogs above has really put some doubt in my mind. I realise that everyone is different and their body's will adapt accordingly, but it looks as if the majority of people use the 'kazee' 5 - 8 times a day. Granted this is alot less than when i had ulcerative colitis but will be hard to manage as i am a physical training instructor in the RAF and take recruits for sports, circuits and running. I am grateful to find such good advice and will definately be asking the docs about some of the medication mentioned to control BM and dietary needs. Will endeavour to update post surgery. Plus, does anyone think that alot more research should be put into such conditions? as i am still unsure wether or not Crohns, ulcerative colitis etc are hereditory. By the way, my mum suffers from crohns!!

It took a while but I'm able to work out now with the jpouch and reduce the number of times I go to the bathroom. The jpouch is really tied into when you eat/drink so if you want to not go to the bathroom during a time period it helps a lot to not eat/drink during that time.

I am way excited that I came across your web site! I am realizing that I have a lot in common with most of you and it's nice to no that I am not alone. I have had my J pouch for 3 years now. I, like some of you had a difficult time during my first surgery and my takedown. I was diagnosed with F.A.P. causing my colon to be completely covered with pre-cancerous polyps and faced with no other choice but to have this procedure done. My question is about something that none of you have mentioned but I have seen people talk about on other web sites, and that is weight gain. My weight was good for the first two years post surgery and it's only been in the last 11 months that I have had a sudden weight gain of 35-40 pounds. I have been asking myself what I have been doing wrong. So far I have not found anything that is helping me to loose it and it's becoming very depressing. The only thing that I can think of is my doctor just gave me the green light to eat "whatever" with no restrictions and my system doesn't know how to handle it. I do have gas on a regular basis and I do have smelly bowel movements. I guess at this point since I have not been able to track down what I can and can't eat I will take your advise and keep a journal and well start "over" with food so to speak. Since there have been no one out there with an answer to why this is happening or what to do to regulate my weight I am looking to any of you who may be in my position and reading this now.... Any thoughts or suggestions would be great.
Thanks for starting this awesome web site.

I'm not sure about the weight gain (I can't ever seem to gain weight actually but I already had a fast metabolism before the UC) but I do know eating a lot of protein will make your bowl movements very smelly. I should actually add that tip to the website. Thanks for posting!

Thanks for your response.

Hope this doesn't seem like a strange question, but is this still a current site? I have been researching and looking for this type of site but many times find it is not maintained etc. What I have read so far has been so helpful. Mainly because I see others struggling with the same thing I am. It is nice to not be alone. Feb. 2010

Yes this site is current though I should put up a more updated picture on here :) I started this website in 2004 and people still post on it on a regular basis. I just don't record the time that people posted their comments.

Thanks! I just started the Greens first. I am hoping this will get me back into the gym. I barely have enough energy at night to say boo. I had my first surgery Dec 2008. The ostomy take down was not until July 2009. I am still trying to navigate the food thing and it is not fun!

I have had my jpouch fo almost 2 months now. The main problem I'm having is that in the evenings, after dinner, I start having sever diarrhea with terrible burning and itching. It is unbearable. I don't know if it's something I'm eating, or ph is off, yeast, etc. Any one else with this problem? Any help would be greatly appreciated!!

I updated the page with more current information. Yes Gayla, you will be tired for awhile after the surgery. It took me a good 8 months to feel physically normal again and much longer for all the psychological trauma from the UC to subside. Theresa, I usually have that problem when I eat something really acidic and/or spicy. You can get PH (litmus) test kits for pretty cheap if you want to be sure about acidity.

This is fantastic, hearing about others, going through what my son and i are going through, i was 15 when i had my first operation removing the large bowel full of polyps,my family have fap, my dad,sister and brother all passed away with bowel cancer in their prime off life, i had another surgery in 2002 for the j pouch, even with all the pain,drama and depression, i am very lucky to be alive, my son had his operation at the age of 17, just in time for his formal, poor darling going to his formal with a bag stuck to his belly,it's very hard to keep working when you spend most of the day in the toilet, but we all have to just keep going, and help eachother through it, for the burning and itching Theresa, i use rectogesic cream, it stings a little when you first put it on but it makes a big difference to the itching, i get a lot of anal fissues,it will give you a slight headache for a few minutes, just check with the dr,

My condolences about your father and sister. I think we all learn through having these conditions to have a much stronger willpower than most people; we have to to carry on with our lives.

My heart goes out to you and your family Deborah. As I mentioned above I also have FAP. I am also very grateful to be alive. Since this is new to me I am curious to know more about the condition. I have been advised to have my children tested but I am much to afraid to even think about that right now. I would like to learn more about this condition if you were up for sharing.

Just wondering if anyone else has to use medina catheter (via the rectum)just to be able to relieve themselves? I have had the pouch since 1990, and have had to use a catheter from almost the beginning due to being unable to go "normally". I have to carry a shortened catheter in my pocket (and small tube of vaseline to help with insertion) wherever I go, just to be able to "go" when needed.

I'll also add what has worked for me. My pouch has always been a problem for me. But I have made it almost 20 years now without any more surgery, which is good. But working with diet, has made a big difference. Cutting sugar completely out, and limiting starches such as mashed potatoes, and white bread has really helped me. Drinking buttermilk, taking acidophilus, plus vit. and minerals helps. When i am having problems, I also try to avoid the sweeter fruits. For meals, I eat a sugar-free cereal such as grape nuts for breakfast, a large meal at noon, and small evening meal. Try eating the evening meal early such as 5pm or so, so the body has time to digest the food before going to sleep. What has helped the most with diarrhea problems has been to take 1 or 2 pepto-bismol tablets after the evening meal, or at bedtime. If you are having real problems with pouchitis, a prescription of flagyl has always worked real well for me. I try not to go to the doctor for that if I can help it, but sometimes it is the only thing for me that will get everything working properly again.

I had my J pouch takedown surgery a week ago. I go to the bathroom at least 30 to 40 times a day. My butt is soo sore. I have used three different types of ointments to relieve the soreness but they don't work as well as I would like. I am trying different foods that were recommended on a site called jpouch.org. This seams to help a small amount. I find that if I sit down on a firm seat I can hold back the urgency to go a little better. Laying down seldom helps. This site has given me some ideas that I will try to slow down the frequency of bowel movements and ointments to help with the itch and pain on my butt. I can see after reading the comments on this site that I am in for a long haul to getting better. Some other people on other sites have gotten much better alot faster than I believe I will. No one has written that they have had as many bowel movements as I have experienced. I hope no one has to go that many times. If anyone has any suggestions for me let me know. Thanks. This has been the most informative site I have seen.

I had FAP with 2 areas of stage 1 cancer and had my first surgery July 09, with my reversal Dec 09. From what I've read, I'm doing very well and lucky. I was glad to hear about others that have to go to the bathroom to alleviate gas. I do find that when I have gas pain/cramping and can't get right to the bathroom can be painful, but try to muster along. I am a veterinarian and do work long hours, but am learning that if I have to go to the bathroom, it's ok to run a little behind in appointments, rather then being in the room with a contorted face from discomfort. My bowel movements are often still watery but sometimes consistency of applesauce. Occasionally I will have it a little more formed than that. I am having trouble becuase I love fruits, salads, coleslaw and pickles, so trying to find where I can still have them, but not pay the price. Shannon, if you would like more info or to chat more about FAP my email is jabo808@hotmail.com. Good luck to all and thanks for the site Will! (Feb 28, 2010)

I forgot to leave an email address above for anyone who wants to give me any recommendations or suggestions or just compare notes.

my email address is desertsage@plmw.com. Can't believe I forgot to leave the email address again. Must be old age.

Thanks to everyone for sharing your experiences. My doctor has been pushing me to have J-pouch surgery for my crohn's disease for a year now, but I've resisted as I have been skeptical of the rosy post-surgery picture the md's paint ("it will fix everything!"). Hearing that some people are still experiencing urgency and so many BM's a day, plus the night-time incontinence and other problems, is giving me a more realistic picture. Plus people with CD often have recurrences post-J-pouch or ultimately end up with an ostomy, which I would really like to avoid. It seems pretty much impossible to know whether the surgery will improve my life or not.

By the way, I especially appreciated that you were willing to share photos of your surgery, Will.

Yea the surgery isn't a cure-all, *especially* for Chrons. But what you have to do is compare the quality of life, this part was really hard for me to do as I resisted the surgery for a long time too (2 years). One day I was in the hospital and I was down to 85 lbs with an IV of dilaudid not able to eat or walk and I thought to myself long and hard 'is having my large intestine really worth all this suffering; do I really expect to get the disease in remission at this point.' That's when I decided to have the surgery; though because I had waited that long, the surgery almost killed me. It's up to each one of us individually to make that decision on what you think is best for you, there is no formulaic answer to it.

I have had ulcerative colitis (with sclorosing cholanghitis in the liver) for 15 years. Half year ago I had the colon with cancer removed. Two weeks ago I had the J-pouch re-connected. I think I am doing reasonibly ok. But a bit incontinent. And with it the burning. I am almost vegan and health-consious. 10 BM's a day, which is what I expected for the first few weeks. I have no gas, thankfully. But the incontinence, I hope I will get on top of that. I can hold it easily, but notice it coming too late. The psyllium husks have taken care of the wateryness, and I will try slippery elm instead next. I use an electric toilet seat, called bidet. It gives me a wash and dries me too. I have had an awful burn before I used the (double dose) psyllium husks, and I wonder what would have happend if I did not have the bidet to douse the flames. Isen't that what they always say 'pour water on acid burns?' I keep records of what I eat and how it affects me. For me, starchy food is good, fried onions and much brassica gave me gas before the reversal, so I avoid them. And I avoid complex meals for now. Surprisingly beans, at least the ones I cook (very long and slow)are no problem. Aren't we J-pouchers a very diverse lot?

I am very excited to have stumbled upon this site. If only i had access to this information 10 years ago. I have a j-pouch and can relate to almost every comment. I was told by my surgeon to NEVER take imodium. I see that the majority of j-pouchers have benefited from it. My current problem that i have not seen addressed has to do with the amount of time i spend trying to eliminate the stool from my body. I have to physically pushed on my abdomen & forced it all out. If i don't do this, i end up going back & forth to the bathroom. This gets embarrassing if im with people who don't know my medical history. Also, its explosive! My friends & husband say it sound like a rocket is taking off. I poop around the clock. Shannon, my surgoen told me to i will gain weight. At that time i was 95 pounds. About 3 years after my last surgery, i gained 45 pounds. I had to actually go on a diet. i personally think it is bc over time your pouch stretches allowing for increased absorption & storage. Plus, you tend to feel better and eat more. when i had UC, eating a spoonful of soup would cause intense cramping & bloody diarrhea. i preferred to skip food. i feel so blessed to have the j-pouch even though it has these complications.

Yea I think the explosiveness comes from the gas going to the top because there's nothing solid to keep it down and make it where you can fart. When all the gas sits on top it acts like a pressure chamber causing pain and tension. The gas/pressure all gets released when you go and it makes it explode out lol. It can be quite embarrassing in public restrooms. I have farted only a few times since the jpouch, all of which my bottom was above my head which made the gas actually rise up toward the rectum.

The Greens First has made a difference in my energy level. I am making it through the work day without wanting to nap on my desk (which I have done before). I am wondering if anyone has tried the Red Alert. It seemed similar to the Greens, just the red fruit/veggies. Wish the Greens First made it to were you could eat normal again. :) However, my husband made the comment I seem a little more like my old self. While what I am going through sucks, it has been just as hard on my husband and children. They are great, but really don't understand.

So its been 20 years since my surgery. I had a bad reaction to the staples used and after 3 major and 18 minor surgeries within a 18 month period, I survived. Since I am bad about watching what I eat, to date, I still go a 8 or more times a day. But I'm one of those me last, family and work first people. It's time for me to get on the right track, I don't like having accidents at night, usually comes on with stress and from what I have read here, eating and drinking water in the evenings. This is the first time I have actually found a site that I can relate to what people are talking about. I thought I was the only one that had "accidents". I plan on using some ideas from this site to help me get on track with my diet. Not sure why, but my weight has always been an issue, I haven't gained any in years but I need to loose 20 lbs. So far I haven't found a diet that doesn't make me go even more each day, which we all know we don't need that. Any suggestions would be great. Thank you for all the info.

I just turned 50 and have had my pouch for 18 years. I have been having perianal skin problems recently so that is how I found this site (which is a really great site). Any problems I have experienced have been mostly diet related. All preventable. Eating a big meal with a lettuce/salad starter caused me lots of problems. Also I would develop pouchitis if I had been eating crap food with lots of sugar. Probitics and yogurt are good. I still use the toilet 5-6 times a day but it is not urgent, have to go now, trips that that I used to have with UC. I pick low fibre food choices if I know I will be out and about. All in all I love my pouch compared to life before. I was in hospital one week after my reconstruction and I have have only been back once at the ten year mark for anything related to my pouch. Common sense and admitting you yourself that you can eat junk. Well you can, but you have to suffer the consequences, which are sometimes worth it. ie chinese food. lol But small portions and chew the food! Another hint, when in public washrooms, to avoid embarrassing noises. I wait until the person next to me flushes, or I flush. The noisy toilets cover the embarrassing noises. Espcially important if you couldn't escape from your partymates to hit the wc on your own.

I am glad I found this site. I have had Ulcerative Colits for 20 years and just 2.5 months ago had my drop down surgery for my J-Pouch. I also found out I have Primary Sclorosing Colanghitis of the liver. AFter a year of being in and out of the hospital my Dr decided I should have the J-pouch surgery. I agreed I had tried everything months and months of prednizone that has damage my bones, Remicade that landed me in the hospital with side effects and pain so bad Morphine didn't touch it. My joints swelled up and I couldn't move. SO I gave in and had the surgery. Well, some things are ok. I could live with the 15 trips to the bathroom aday but the gas is horrible and it doesn't matter what I eat. I can pass enough gas to send the Balloon Boy around the world. And it's so painfuil sometimes. It burns so bad at times and keeps me up all night long some nights. I have tried Imodium and it makes it worse.The only thing that seem to help was Hydrocodone but I can't have that anymore....rats....LOL Anyway, I am trying to pay more attention to what I eat and see if I can figure it out. I also can't seem to gain weight. I got down to 88lbs after sugery. I am now at 92. I am 4'11" so it's not real bad but it's not a good look either. I just look real frail. I have always been very healthy and active and this is very hard to deal with sometimes. I want my stregth back. I guess it will come back in time and things will get better. I just wish the gas would stop. It seems to come on when I go for a couple hours without eating something. Then when I do eat it will go away for a while. But it will always come back at night to keep me up. Trial and error...I guess it's different for everyone but this forum has cetainly helped me understand things. Thanks you

Brenda, it will take a bit longer to get your body back to normal. It's been through a serious trauma with the UC then having a surgery of that level. It took me a good 8 or so months to get back to normal after the surgery albeit I was in really bad shape at the time and down to 85 lbs (I'm 5'7"). With the gas, that will equalize over the next while as well though also watch for eating gassy food and how much you gulp air when you eat. Some people when they drink or eat take in a lot of air and that air has to go somewhere!

Susan, great tips there. Sometimes it just explodes out of me and is smelly to the point of clearing out the bathroom lol! It also helps to flush immediately after it comes out before you stand up.

Thank you Will. Today actually turned out to be a pretty good day. I had to pinch myself....lol! I almost forgot for a short period of time I had all this going on. So little by little I can see it getting better. It's just hard to see sometimes I guess. Thank you again for putting this sight together.

Hello all. I've a J-pouch now for almost 15 years. While I still have to avoid some foods, I can almost eat anything I want to. But the reason I wanted to post has to do with what I'm reading about some of you not being able to pass gas. I also have the same issue, but have found a solution that works! For me anyway. I've found that by laying flat on the floor, stomach down...I am able to pass gas without any hint of the dreaded diharea. This technique has improved my quality of life tremendously. While it is sometimes hard to find a suitable place to lay down, its much better than running to bathroom just to toot a little. The main drawback is public restrooms of course. Expect to get strange looks from ppl if you plan on doing this in a public restroom. Hope this helps.

Hi everyone! I lost my great-grandmother, grandmother and uncle to F.A.P. before they were all 36. My father has it and had j-pouch surgery 15 years ago. My son and I both have it and my son has Gardner's. I had my first surgery in April 2009 and takedown in July 2009. I just made my year mark on Wednesday! It was an incredibly emotional day because what a year it has been! I had a really hard time with my ileostomy. My weight got down to 95 pounds, my teeth and gums hurt, my hair fell out. It was rough, but I've put a healthy 20 pounds back on since July. My hair is growing back in and I'm feeling better finally. My dad told me forever to give it a year before I would get here...and low and behold. I still use the restroom 8+ times a day. I don't eat gassy foods, red meat or any type of red sauce. They just hurt too much. I do have a question about vitamins and veggies/fruits. I pass vitamins almost whole still, so has anyone had success with liquid vitamins? Also, does juicing fruits and veggies make things worse or is it a helpful way to get those nutrients? I really miss them because I've never really been a meat eater. I have never successfully passed gas. It is an ongoing joke in my house that if someone smelled it, they know I definetly haven't dealt it! I just always say, "Wasn't me!" My 9 year old son jokes that we need to go to Nasa and have them invent a seatbelt for our toilet because I'm going to blast off. If you can't laugh at yourself, what can you laugh at? The gas is just bad, no matter what you do. I'm having a hard time deciding when my son will need surgery. He will be 15 in July and already has over 50 polyps. Does anyone else have them in their stomach and esophagus? My doctor is kind of unclear about what we need to do with those? I do have adenomas, so they have a chance of changing. Just curious what anyone else has been told?? It's great to be able to have a place to go to talk about his. It has been in my family years, but other people just don't understand.

Thank you for all the years of knowledge. I have had my J-pouch since 1992. I do relate to the person that had to have surgery to correct the j-pouch position. I had to have that done in 1996 as I was having stool leak into my vagina. I have had bouts with pouchidest but, only for a few days so never have been treated for it. This week I did end up going to the emergency
as I was having problem going to the bathroom and I started vomiting. As going to the emergency is so hard, your scared, your sick and you don't know what to expect. I had to wait 6 hours before I could see the doctor. I prayed and prayed that I'd start feeling better and I ended up going to the bathroom and finally was able to go. I think that by eating peanuts the night before caused this problem. Some of the peanuts had the skin on them. What I was wondering is when you have these bouts with pouchidest do you have a very sore area where your pouch is? It isn't a pain it just feels sore. Even though this happens I am glad I did have the J-pouch surgery. I do everything I did before. I try to stay positive and keep myself busy even if I do feel tried. I know this disease can be very draining. So thank you everyone for sharing.

I'm using my J-Pouch for 7 months and have a wonderful time.
I go 3-4 times a day to the bathroom and sleep through the night.
I eat everything and haven't had any problems with food.

i love this blog. my son is on his 3rd redo of his j pouch and we are still learning. i would like to know if there is any screening tests to show if you will pass on this ulcerative colitis gene to your children or what the chances are. e mail me at skwarek.andrea@gmail .com

Sorry I have not logged on for a while. My doctor here tells me that with FAP you do get polyps in your stomach, liver, thyroid and brain. I personally was informed last year that I have them in my stomach and also pre cancerous ones in my duodenum. I still need more answers as well but wanted to share what my doctor has told me. I will do what I can to see if he has a web site and I will give you all the link. Until next time-

Here is a link on my doctor, Randall Burt :http://globalperspectivesoncancer.org/dr_randall_burt.html

Here is a link that actually talks about the other types of cancers that come with having FAP:http://rarediseases.info.nih.gov/GARD/Condition/6408/QnA/21661/Familial_adenomatous_polyposis.aspx#ref_482

Hi, is RAF John still there? How are you getting on? I was told having UC or a Pouch would disqualify joining the RAF on medical grounds - could you please shed some light on that from your own experience? Or any other military folk out there? Not sure about hereditary link - but my mum has proctitis, so is possible!!! Will - great site, thanks. I've recently had my take-down and finding the site useful.

I think UC is hereditary. My mom died at age 49 of obstruction of the bowel. I have UC and my son also has it. My son is fighting to save his colon and is on heavy drugs. He seems to be doing good. Under heavy super vision by doctors. I totally agree that stress causes the flare ups. He is a police officer so I know he is under a lot of stress. I just got back today from my dr having my J-pouch checked. It has been two years since I have had to have the procedure done. Dr said everything appears to be looking good. He took biopsies. I feel very bless having this pouch for 14 years. Anyone with a new J-pouch please give it a chance. I know at first I was very frustated but as time goes by it will get better.

Hi Jessica C:
I also have FAP (my father and grandfather had it as well). I had a single state protocolectomy/j-pouch construction and attachment in early April 2010 at the age of 23. After experiencing interesting symptoms and knowing about my family history, I went to see a gastroenterologist. During my colonoscopy, he discovered hundreds of polyps and decided that a surgery within the next few months was crucial. The biopsies of polyps taken were not cancerous yet, however, the doctor revealed that we had no idea of knowing when a turn for the worst could occur. Before my surgery date was finalized my surgeon had me complete an upper endoscopy and abdominal CT scan. My upper endoscopy revealed that I do have polyps in stomach (none in my small intestine though). I will continue to be screened every 2-3 years. My doctor informed me that it is very common for individuals with FAP to have polyps in the stomach and they are usually not a problem. Mine were not the cancerous type. I gathered from him, however, that polyps in duodenal area of the small intestine (if they are adenomatous type) are more serious. You mentioned that your son has Gardner's - how was he diagnosed? Every since my surgery, although I'm feeling pretty good, I have an ongoing fear that I may have Gardner's (I'm can be paranoid). I would really appreciate if you could provide more information about your son.
Comments are from May 2010 - feel free to email me at jennifer3186@gmail.com if you'd like to chat.

For those still struggling with lack of energy, I cannot say enough positive things about Greens First. I researched it after noticing Will mentioned it. I was looking for something to help with energy and the fact I am so limited on eating fruits and veggies. I am now back to exercising like I did before my surgeries (I had my take down surgery not quite a year ago). So, it is well worth a try.

I wonder what I am doing wrong then because I have not been able to handle any "green" medicines at all. They make me very uncomfortable and gassy. I used to live on supreme greens before my surgery.

i have had my Jpouch for almost a year and a half now. i never really knew what was supposed to be "normal" but i know it sucked going to the bathroom 15 times a day/night. i started Probiotics (VSL#3) a couple weeks ago and it has been a Godsend - i highly recommend this. esp because i was so reluctant to constantly be put on ANTIbiotics because im thinking "what happens one day when i have had pouchitis or whatever 15 times and the antibiotics wont work for me anymore?" plus i have about had it with Drs. i cant believe Will your story about them telling you you had crohns and being wrong! that was very wise of you to ask for a second opinion and i will keep that in mind. im glad to see alot of ppl here are finding satisfaction thru natural means. i am going to try some Greens Whole Food supplements to see if that will help increase my energy. so far it upsets my stomach a little bit but im going to keep experimenting and maybe just eating some crackers with it helps to have something else to absorb along with the supplement. i have never had an accident. i think if i had known it was so common before surgery maybe i wouldnt have opted to have it. it seems like such a horrible inconvenience and embarassing. luckily tho i can say thats not my case so it must not be the case for everyone, but drs always seem suprised i dont have accidents. its kinda depressing, im sorry for those of you who struggle with that. Will thank you aswell, its amazing how such a simple website has been so successful in bringing us all together. I live in Bloomington, Indiana and my parents live in Taylors, SC and i visit occasionally - my email is bryantcl@indiana.edu if anyone ever wants to contact me i am more than willing to talk more about UC/Jpouch experiences.

i hade my j pouch done 2 years ago, and have laos had 2 liver transplants, i was on long term disability, and they now deicded to "cut me off" my doc sent ample info saying i was still ill, but they neglected to take that into consideration....i still go to the bathroom 15 or so times a day. and have pain when i hold "it". anyone still have problems like this? being immunosuppressed doesn't help the matter, i have alomst a constant pouchitis.....feel free to emal me....scott.hartlen@eastlink.ca

if you are having problems passing wind without creating a mess try lying on your back obviously behind closed doors bring your knees to your chest as high as possible and slowly go through the motions of as if you were on the toilet it takes a bit of practice but I can asure that you will significantly reduce the number of bathroom visits. Its all a question of physics quite simply the gas is looking for the easiest route out but unfortunately there is stool in the way when you lie on your back gravity has a greater effect upon the stool and the gas perculates out quite easily, you really have to train your rectal muscles to open very very slowly in order to do this but it really helps prevent perinal scouring which is caused by concentrated ileum acid which has not been reabsorbed by the large intestine which is a complete nightmare, sounds a bit crazy so is life Ce la vie !!! IF U HAVE ANY QUERIES CONTACT ME BYE
CONTACT: walshe_1@hotmail.com

Hi everyone. this site is amazing, and mostly reasuring for somone like me, who, at the moment is living with an illeostmy, but due to have an J pouch on the 22nd July (6 weeks time!)
i know you all say that different foods work for different people, but there must be some staple foods that work for everyone?
at the moment, i find chips make firm passing. a Macdonals meal works a treat haha!
i dont mind living with my illeostmy but have been recommend the J pouch, over staying as i am now. im 18, in the middle of crucial years of college, and looking to go to uni next september. i reli hope someone can shed some light on how to live with a J pouch from day 1.
thank you so much. im quite nervous about the whole thing.

...also, if anyone can help with a list of good foods or routines or whateverrrr helps anyone of you with J pouches, it would be great if u could send a quick email to me at

claudehoarau@hotmail.co.uk

Thank you!

had j-pouch surgery 2 yrs ago. any suggestions on what is good for but burn
thanks

@manny I use Calmoseptine, it works great

Nice site. Had my jpouch for 17 yrs, still has its ups and downs to be sure. Currently, the "down" is nights. I get up 3-4-5-6-7 times, sometimes I just lose count. What is the deal with that? My days are OK, maybe 6-8/day (give or take). Does imodium take time to be effective, like a week or more, or should it be effective immediately? I've tried it and find no difference in frequency, really. I need sleep or I will go bonkers soon. I have a script for levaquin, in case I get pouchitis symptoms, but I don't even know, after 17 years, what real pouchitis symptoms are. I don't like taking antibiotics unless I am CERTAIN there is a need for them. Anybody have suggestions?

I also find myself going a lot during the night. I have most of my problems then too, especially if I have ate something that disagrees with me. My husband actually found these "sensitive" baby wipes by pampers and they work miracles for me! I just found some others that are flushable, I will let you all know how good they work. Ann, my doctor prescribed me Loperamide 2MG (I am told that this is the prescription for immodium) and although I have not taken it a lot over the last year and a half it worked wonderful for me. I still keep it on hand as it works great when I get the stomach flu. I hope that this helps.

I was a pharmacy tech in the Army for 11 years and I have a J-pouch. Loperamide and immodium are the same drug. Lomotil is the step up(stronger) from immodium. Lomotil is derived from opiots, which slow down your digestive tract. Immodium works on osmotic diffusion, or movement of water out of bowel. So which one works best for you might be different, but Lomotil should work better.

@Jason, yea it was my experience that any opioid slowed down the gi tract and helped out so that totally makes sense.
@Ann, for comparison I usually go twice during the night. When I got pouchitis or when I ate something bad it was a lot more. Are you keeping tabs of what you eat to see what could be causing the problem? Also sometimes when you have pouchitis you don't feel anything, you'll just go to the bathroom a lot and have more urgency so that's something to check into also.

I have had my jpouch for 1 1/2 yrs. It was the best thing I ever did. After suffering miserably with Ulcerative Colitis for 15 yrs. & just not being able to get myself to go for that extensive surgery, I finally did it becuase it was literally killing me. I didn't even recognize myself anymore physically & mentally. I ended up in the ICu for days with severe pancreatitis caused by Imuran. Talk about pain. I tried a few holistic & alternative treatments, magnosteen fruit, aloe extract, VSL3, to name a few, with no positive results.I have 2 small children to take care of & my husband should be a saint for living that hell with me. The inconveniences I have now are nothing compared to the pain, bleeding, accidents in my clothes, chronic prednisone use etc. Now, I am a much happier, healthier person & so is my family. I do find alot of the same problems with night time bathroom use, varying from 1 to 3 or 4 times, gas that I can only get rid of on the toilet or sometimes lying on my side but that is risky because of some possibly leakage. I visit the bathroom 6-8 times a day & even when I only go to pee, I usually then have some BM I can get rid of. But none of these visits are any urgency so I really don't mind going that many times. I also find sometimes excessive gas in my entire GI tract causing even visible bloating in my abdomen up under my breast area. I do not watch my diet much as to avoid gassy foods because it doesn't cause me to be that uncomfortable. I was taking Metamucil early on after I was healed from the reversal but got away from it. My stools vary from very loose to somewhat formed. I use to have night time leakage but haven't had that for at least 6 months now. I have times when I get irritated externally & use a variety of creams that help usually overnight. Baby wipes are a blessing also during times of irritation which sometimes brings with it alot of itching. My nurse practitioner explained the irritation is from the stronger digestive enzymes that are in the BMs that don't go through the colon anymore. One thing I feel I may have is low grade pouchitis alot of times. I never have pain but once in a while a trace of blood but the most noticeable symptom is the strong bearing down when having a BM. I am not sure if this is a symptom, I know the blood is but it is not alot. My nurse practitioner told me there is a chance of inflammation just inside the anus where the small intestine was attached to a small ring of rectum they leave in for that purpose, so there is something to attach it to. This could flare up like it use to with the Ulcerative Colitis. I don't know if that is what it is or if it is pouchitis. I never took antibiotics becuase my symptoms are not severe. I have used Hydrocortisone suppositories which have helped really calm down the strong uncontrolled pushing or bearing down, but it eventually comes back. I really don't have urgency, in fact, I can hold my BM for really as long as I need to until I find a bathroom. Once I was traveling on the interstate, I held it for 30 min. until I reached home. I take Lomotil at night but it really doesn't seem to do anything, I still get up just as much as when I don't take it. So that's my story. I know I was so sick & had so much pain all the time for so long that I guess I tolerate all the quirks with this jpouch easily. I just hope I don't acquire any more severe problems in the future. I am so glad to have found your site. Just reading everyone's stories has given me a real sense of support, somewhere to turn. Thank you.

Forgot to ask, does anyone experience a very uncomfortable/discomfort sensation at the site of the former ostomy? Thanks

Thanks for your post Sheri. I did notice a strange thing recently in regards to the former ostomy site. I was recently at Stewart Mineral Springs near Mt. Shasta taking a mineral bath and the former ostomy site got irritated and sensitive for some reason and all these red bumps appeared there. I'm still scratching my head about that one.

This has been very interesting to here everyone's experiences. I have had a J pouch for at least 7 years now. I have a very hard time eating healthy foods. I have found out over the years that pamper baby wipes are the best to use every time you go to the bathroom. It can take a very long time for your skin to become normal again. All that wonderful wiping. I still get up at night to go to the Bathroom. I also use medication to control my bowels. I seem to stop eating if I want to go out. It changes your life quite a bit. A lot more planning now! Am glad to here all your stories. It's nice to know your not alone.
Thanks again!

Ann,
I have had my j pouch for almost 18 years and I find that I have to eat early like at 5:00 p.m. And than helps with the bathroom visits at night. The most I go at night is one to two times. A few things I try not to eat at night is ice cream, and chocolate. Eating late at night is not good for me. I don't take any imodium at all. I do eat a lot of fiber. When I first had my pouch I used over the counter imodium I ended up in the ER as it stopped my pouch from working so I guess everyone is different but, you need to be careful of taking things. I know I get pouchidest and I just wait it out. My simpston are going to the bathroom a lot with a little cramping. It usually passes in a few days. I know it can be annoying, however, this disease as made me have patients and keep a positive attitude. Hope this is some help to you.

Thanks for all your suggestions! I'm seeing my PCP in a couple weeks (painful neck glands ... weird), and will ask him about lomotil, just on a trial basis. My surgeon seems to be getting the "the fewer the meds, the better" attitude, and generally I agree with that 100%. But I need sleep so badly - work a full-time job, and it's not easy after being up so often at night. A few nights ago I got 5 hours straight sleep. A record! The next day I (almost) duplicated the food I'd eaten the previous day, and I had to get up 3-4 times, and had an accident (not uncommon with me). I am not very skilled at figuring out what food, if any, is the culprit. I finish dinner at 6 pm, and eat nothing after that - bedtime is 9:00. I do have a thing for ice water, and am cutting that out at night, also. It just seems like --- I lay down, I have to go poo. Anybody ever try tincture of opium? I hear pouchers get good results with that, although I'm certain my surgeon wouldn't give me a script for it. Thanks again for everyone's input.

Opioids are known to slow down peristalsis so I'm sure a tincture of opium would really help. Opium is illegal in the USA though but I'm not sure about other countries.

Hi Will, all of this information and people's insights have been very valuable to me after I came home from the ileostomy closure and began 'using my pouch'. Im 30 and was diagnosed in 2008 with U/Colitis and I really did not know much about it. I was taking a mild drug - not predisone and I thought I would be fine. I did not realise how serious U/C can be till one year later in 2009 I had a major 'flare' resulting in hospital admission. My body did not respond to IV cortisone or cyclosporine and after 3 weeks in hospital and nearly dead from blood loss, I had a full colectomy and was in intensive care for days post the surgery, requiring blood transfusion and critical care. Since then I have had a tempory stoma, a second operation that created the jpouch and 'loop ileostomy' (that sucked - high output stoma - food literally went in - then came out about an hour later. I coped with both stoma's well and like you I watch what I eat and am cautious. Only 2 weeks ago (June 2010) I had the ileostomy closed and now using my new jpouch. Originally I was on the toilet 30+ times per day, but slowly it has reduced and the last few days it has been 6-8 times and only some nights I will have to get up once, most I have gone the night through without having to go. I am taking one immodium after my dinner and have taken a lot of advice from all these previous posts. I have also been given a booklet titled 'is that a pocuh you've got'. Its from the United Kingdom and written by a man who has also been though U/C and has a Jpouch. The best piece of advice I read was quite simple. Being; If you expect to go back to a normal life, how you were before when you were healthy, you will be sadly disappointed. Your jpouch is man made and is doing a job that it was never intended to do. I am very grateful to firstly be alive and secondly that I am now quite healthy, even if that means I have to go to the toilet 6-10 times per day. Your story provides great information and was helpful to me and my progress.

Hello. I have had my pouch for a little over 3 years now. I fully assert that it is 100% better than living with UC, but I would never say it is easy. I have had constant problems with my pouch since the beginning. Chronic pouchitis, dehydration, anemia, no weight gain and intense pain. I am still trying to try new things and make my health the most important thing to me, although there are many days that I wish I was only a head floating around with no body. I am usually in the bathroom around 20 times a day. I noticed that alot of folks here talk about foods that help slow the output. My 2 recommendations are pretzels, and MARSHMALLOWS (sugar free). A random person mentioned it to me once and it really can help.
I have just started seeing a naturopath. She started me on vitamin B-12 injections, which have helped my eneregy. I was basically disabled for the last 6 years. I would sleep for more than 12 hours and still be exhausted.
Keep the faith everyone!

I came upon this website as I researched problems with the Jpouch. I've had mine for four months and am very happy with it, for the most part. I am continent, taking Imodium twice daily. I will have problems from time to time with itching and burning and have found that they're generally caused by toasted almonds and chocolate. I cut those foods out and I'm . The one problem remaining is that I'm bleeding again. I've had UC for about 15 years and that was common then, but now-- I thought that I was supposed to be through with all of that. Has anyone else had problems with rectal bleeding?

Deb, In order to have a J-pouch, there is less than an inch of your rectum left in. That little part sometimes doesn't know the other organs have jumped ship and is still has UC flares. This is one reason for pouchitis, according to what I have been told. I am not sure the volume of your blood. What color is it? You can generally tell where the bleeding is based on the color. So it could be the remaining rectum, you could have pouchitis.

My comments are from early July, 2010.

Thanks Tammy, I'm really not too worried about the bleeding. It's bright red and a small amount and I do have times when the symptoms resemble pouchitis. I just was surprised to see the blood and of course, disappointed. I'll contact my doctor.

I like your site, and the fact that you're sharing your experiences, Will. I read through some of the comments here, and in case it hasn't been mentioned, there is a great site for Pouchers; www.jpouch.org. It has a valuable discussion forum, but don't make yourself crazy filtering through the numerous posts. Take what is helpful and leave the rest. Each person's history and course of disease is unique. Best wishes to everyone.

hi all. good work on the blog will. i need to do this too.
I've had a jpouch since 2002, can't believe it's been so long! I'm up now because of food blockage, and finally after a few hours it is passing. the main culprit for me was almost certainly short-cooked mushrooms and spinach stem fibre. usually if i'm a bit dehydrated or have been drinking alcohol i am more susceptible to pouch irritation and blockage.
an interesting point for everyone to consider about diet is bloodtype dieting. i think it's well worth looking into considering our dietry restrictions. eating foods that don't conform to your bloodtype can have very volatile effects, such as passing rapidly through your system. for me, type O (something) pork for example is a bad meat to eat. this has always been the case, as has been with orange juice, literally poisonous to type O bloodstream.
Well, I don't have all the facts but there's lots of info around and good books with recipes.
Good health!

Hi there, I am a 50yr old female with a complicated health history from age of 29. I had UC some years ended up with a temp ileostomy for a year while the jpouch that was formed was healing. After the year ileostomy taken down and a year after that jpouch failed due to high doses of prednisone so another ileostomy on the other side of my abdomen as surgeon couldn't put one back in the same old place. My question to anyone out there is I have had my 'stanley' ileostomy 6years now but recent emergency surgery for a hernia twisted round my bowel had surgeons asking me to reconsider a jpouch again.....I am on low prednisone now keep very good health after finding out I had after all these years Coeliacs disease so my diet before the ileostomy and now is very different with eliminating gluten.....so with the current situation I am thinking now of having another jpouch. Can anyone tell me if they have been through a second one after an original failed one. God bless all of you brave people too

Hi everyone! I had my last surgery 7 hrs ago, since that time Ive only been to my dr two times , both right after the drop down.... Today I finally went to a gastrologist due to pain and an embarrassing symptom... Sometimes I leak stool into my vagina. I'm so mad at myself... I didn't even tell him that was happening. It's so embarrassing ! He is going to do a sigmoidoscopy on Monday so hopefully I will find the courage to tell him about this before he starts. My life since the pouch 7 hrs ago is 100% better than before but now the symptoms are so embarrassing I can't tell anyone to find help.I have leakage into my vagina, explosive bowel movements , I always have to wear a panty liner due to leakage and the lack of sleep is horrible!

Mary, I hope you told your doctor. Fistulas can be a big problem and need to be fixed, especially in that area. I had one a few years back (3 surgeries in 6 months), but it seemed to heal on the 3rd try. I am very happy I got the J-pouch: it saved my life. I go 3-15 times a day, depending on what I ate and whether or not I'm having a flare up, but considering I went between 50 and 100 times a day with colitis, I feel true freedom. Will's diet is spot on to mine, and I have had little to no leakage since I had the surgery 6 years ago (knock on wood). I take antibiotics religiously and avoid lettuce like the plague. The biggest downside is the constant itching, so I carry Calmoseptine with me all the time. It's glorious. Keep up the good work everyone--we're not alone!

Hi everyone. I'm 4 weeks post-op after my one-step total colectomy and jpouch construction surgery. I must say that I pretty much wholly agree with the above list of good and bad foods. I have been avoiding spicy foods and foods with high citrus/acidic content and have only had one very mild run-in with "butt burn," so if you want to avoid skin irritation down there, you should totally do the same. I don't get very much vitamin c intake, so I take a daily chewable multivitamin for that, and to help with the vitamins I'm missing out on in my diet. I didn't have any food problems pre-surgery because I had my colon removed as a result of having Familial Adenomatous Polyposis (FAP) instead of another colon-related illness; I just completely did away with my risk for colon cancer. My surgeon made me aware that females are more prone to constant gas, especially when waking up in the morning. I take Gas-X when I'm having a lot of trouble with it. My surgeon also informed me that it's okay to take up to 16 Imodium per day for thickening movements/output. I don't take that many, just 2 in the morning and 2 before bed, but I also take 2 Lomotil tablets before most meals and it seems to help some. That's my story.. And I'm sticking to it. Good luck to all of you, and thanks, Will, for such a wonderful website and great information!

Thank you for a very informative site Will. My note is mainly for Shannon and any other F.A.P. families. I have FAP and my two sons also. My brother and one of his daughters has it too. Our mother died with bowel cancer at 44 yrs of age and we assume she had the mutated gene. I had a colectomy at age 28 and am now 70. In those days the J Pouch wasn't known about, so my smaller intestine is joined to the 5 inches of rectum/larger colon. My sons have the same operation with the joining of 9 inches. We have been on 12 monthly checkups for both gastroscopy (we have polyps in the stomach) and flexible sigmoidoscopy. Up to this point, we have had the offending polyps removed through the day surgery and there has been no problem. I have only just been found to have a cancerous polyp in the upper rectum and now am hoping to have the J Pouch. I also meant to say we have Gardners in my family too. I lost my second boy 7 yrs ago at age 38 with and an inoperable Desmoid Tumour and last year I had a Desmoid Tumour removed along with the rectus muscle and part of a transverse muscle (both of which have been replaced with Gortex mesh) and am on 3 monthly checks with that. I am hoping to be able to handle the J Pouch and on reading the variety of letters I think I will be able to. Because of losing my larger colon 42 yrs ago I can remember going through the process of trying to control the bowel,colic/gas and wondering what to eat etc. I guess I'll be back to square one with the J Pouch. At present I can eat anything and losing the colon didn't stop me from doing anything. At the beginning if I went anywhere I had to make sure there was a toilet accessable because I knew I would be going after the meal, but now I go about 4 - 6 times a day and don't think anything of it. I'm hoping with the J Pouch - although it will take some time to get used to - that I will eventually be able to adjust to it as I did when originally losing the colon. Regarding the FAP condition, I don't know if you are aware you can have a blood test to isolate the gene so that any future members of your family will only have to have a blood test to determine if they have the condition. It took 9 months for them to isolate my gene, but now the rest of my family only have to have a blood test not any other invasive tests. Thank you again Will for providing this site. I couldn't find anything like this here in Aus.

Thank you for your post Barbara, one thing that I often wonder about is if having a JPouch will affect my lifespan. The fact that you are 70 and still doing well having had the colectomy 42 years ago gives me a lot of hope.

Hi Will, I can assure you from my side my life has not been handicapped in any way up 'til now. I have always been an active person - have played all sports, gone on lots of trips, done a lot of handyperson work (laying tiles, gardening and all that goes with that and lots of other physical jobs). After working in an office all day, I enjoyed those activities and consider myself blessed to be able to function normally all these years. I might add my niece who has the J Pouch had it done at age 15, and is now 35 yrs and has gone on to produce 4 children during that time. She is still doing well and living a normal life. That is encouragement in itself. We are so lucky to have these options. Isn't it wonderful what can be done now.

After reading these comments I feel fortunate. 1992 I had surgery for colon cancer and a reoccurance in 2010. Surgery in Jan and an Ileostomy with a reconnect at the end of Feb. My Dr. really gave me no help regarding diet saying everyone is different and I will adjust to a new normal. I have had a rollercoaster ride of trying to determine why some foods seem to bother me one day and not again the next time I eat them,. Last week I was on vacation and through some really miserable days of constant trips to the bathroom and really feeling bad. I realized it is most often what I drink than eat. Tons of beverages (including soft drinks and even tea) have citric acid and ascorbic acid and it goes right through me just like grapefruit and pineapple. I am now a label reader to be sure about what I am consuming. I am feeling fortunate to have figured this out finally after 8 mos but am surprised to not have seen anyone else commenting on liquids.

Hi i had j pouch surgery on june 4 2010 because of u.c. for 6 yrs.it was the worst idea i have ever done.i kept getting infections and beeing hospitalized.This was the worst summer of my life.If anybody wants to get this surgery i recommend do this in the fall or the winter seasons.My reconnection surgery was put off twice because of the infections.I had drain tubes hooked up for weeks draining blood and bio fluids.It was the worst pain i have felt.Then i got addicted to strong pain meds dilaudid.Its been crazy.The doctor told me ill be able to eat spicy,drink beer,and nuts.After reading this im pissed that i can drink and eat what i want.I hope after reconnection everything works out ill let you know.surgery is sept.13 2010

You can try the nut butters to slow down the transition time of your stool and this will help you put on weight. Be careful not to choke on the nut butters and do not mix it with your food as well. Possibly take it before you eat. If you want to relieve gas at night and avoid messing your pants, try lying on your right side and then let out the gas...My diet is mostly just meat ..I do high protein low carb..no sugar, whether artificial or not and no grains at all. I uae to have body aches until I took out all the grains...and I have not had any problems..I recently graduated and am a nurse with a BS..plan to become PA in a few years...life goes on with the pouch..

Thank you for your wonderful site-love the comments and helpful suggestions-I had a J-pouch done nearly 2 years ago complicated with an anastomosis leak exactly 2 months later. I had many months of multiple loose stools, never seemed to changed with diet/medications (lomotil/immodium.) I take 1 heaping tablespoon of Metamucil 4 times a day and have good control but still get up 1-2 times every night. I recently started to have trouble with my breathing am now wondering if there is a connection with the GI problem. Thanks for all the info-

In traditional chinese medicine, the lungs are large intestine are paired together; somehow related. I know personally I also have respiratory issues ontop of having had UC so I'm not sure.

Has anyone heard of a vitamin B defiency after having the J-pouch? I am starting to wonder if some of the symptoms that I have been having are related to this-shortness of breath, tingling of the hands and feet on and off, very weak and extreme tiredness. I am going to the doctor next week to ask for blood work and try and narrow this down-I can't continue to live as I have been.

The large intestine is responsible for absorbing Potassium, Chloride, Vitamin B and Vitamin K so you have to make sure to take more of those than normal and try to get them in bioavailable forms rather than compacted vitamin pills.

My 15 y/o daughter has UC and is 2 months post takedown and feeling quite well, compared to where she was just a few months ago. Her frequency is, on average, 8x/24 hour period, and she typically gets up once at night, but sometimes sleeps through. Her doctor feels that her frequency is too high, and wants her to take a 5 day course of Flagyl to "balance" her intestinal flora. She had a scope a couple of weeks ago, and everything was normal - no pouchitis. The prescription is based on frequency. We actually thought things were going great :/ Have any one you had any experience with this?

When I was having so many frequent movements after my surgery. I started taking Florastor (a little pricey) and then just started taking Pearls both from the pharmacy. Better than just eating yogurt. Met a lady at church today and got in a conversation, turns out her son had J pouch surg. 4 years ago. She went on to tell me how much adjustment there was the first year and that a lot of things will get better (the way certain foods affect me and control issues, mainly see above comment) I left very encouraged. I am having an issue with my fingernails peeling and wondered if it is related. Anyone have a similar issue.

Barbara (from Australia-I want to say that I am also relieved excited to know that you have lived such a long life with FAP, as this gives me much hope. I did have the gene testing done to confirm my mutated APEX gene. I have also been informed that I should have my two boys tested through a blood test, as I am told that they both have a 50% chance of having this as well. I have not yet decided to have them put through this. I would like to know more about what your doctor finds and says about your stomach and the polyps. I have been going every year for my annual testing, Oct 2nd marks four years since my colectomy. Although I still struggle with my J pouch and my new life style I keep up hope that I will continue to learn more about this genetic condition and find more answers to those uncertainties.

Hi Shannon, lovely to read your comments. At the moment I don't have much to report re the stomach and polyps, apart from them being clear of cancer. My son has a lot more than me and the surgeon wants him to have a gastroscopy once every month for 4mths to cull some polyps, as he said some are changing but he assures us it is only a precaution and makes it easier to check on the ones that are left and any new ones that crop up. I am waiting to see if I am to go into hospital for the J Pouch or whether I have to have chemo and radiation treatment first. I had my PET scan, CT scan and MRI on Friday 10th Sept. so expect to hear from the surgeon this coming week. Fingers crossed I can have the J Pouch. That too depends on what length of smaller intestine is left - we'll see. I sympathise with your dilemma re your boys. Nobody likes to think of their children going through this. My niece was 15yrs when she was found. It's all positive though, she has led a normal active life with bearing 4 children as well and is now 35yrs. As the years go on it does get easier and just becomes a new way of life and in time you adjust to it without even realizing it. I will keep you posted regarding any new information that crops up. All the best to you and your family Shannon.

Hi. I suffered with UC for 9 years before ending up in the hospital for six weeks. I got a j pouch in 1996. I continuously have had problems with bowel movements espcially at night. I find that taking three immodium in the morning and three at night does help. At present, I do have alot of gas and it makes gurgling noices which is very embarrassing espcially when you are in a quiet place. Any suggestions for this gurgling? My butt is burning so badly and I've tried Balmex, but I really need something stronger. I think I might try that ointment mentioned above (calopine?) to see if that works. I do drink coffee in the morning and eat an egg. I don't drink OJ anymore because of the acid. The gas is also smelly. I just don't know what else to do. Any suggestions? I've had three sigmoidoscopies withing the past three years because of diarhea and abdominal pain. My GI thought that I might have Crohns, but the tests came out negative. He did find a stricture at the junction between the small intestine and J pouch. My last one showed inflammation in the small intestine and the pouch so he prescribed Lialda (mesalamine) twice a day for the inflammation. I've tried Benefiber, but that didn't seem to help. I think my problems are caused by my diet. Thank you so much for your website. I've learned alot but still need some suggestions.

Yea try the Calmoseptine, it's the best I've found :) Also, coffee is bad for the jpouch because it's also very acidic, I drink either green tea or Teeccino instead.

Susan G. I have never had problems with my nails until after my surgeries. I have started taking Biotin and things have gotten better. Hair and nails use biotin, which is a B vitamin. You may want to look into this.

One of the VERY best recommendations I can give anyone who has a digestive disorder, and especially a J-Pouch, is to get injections of B-12. They usually are given in series of threes. It literally changed my quality of life-energy wise. Malabsorbion of all B vitmains is going to happen with us, due to our body plumming. Ask your doctors, and if they say no, try a homeopath. That's the route I took. Still having alot of other symptoms as usual, but that's the way it goes.

Hi to everyone...

Firstly can i just say what a great site... I developed Uc in 2002 a few months before my daughter was born, i had howver always suffered alot from tummy cramps following a meal & low energy levels but no other symptoms until i was 7 months pregnant.. & then Uc hit me lit a cricket bat.
When my daughter was just 10 days old i was diagnosed with acute Uc affecting the whole of my colon and retum, resulting in a concoction of medication , long and short i was ref quite early on to my surgeon but i put surgery off for a further 18 months! basicaly until i got to the stage that tying a shoe lace exhausted me and my husband frequently had to hold me on the toilet because the pain and bleeding was so bad. I had a two stage proceedure concluding in my J-pouch!

I followed what seems to be a common path for the first year or so, simply trying to ajust to my new plumbing however in comparrison to the Uc and worse the ileostomy i felt blessed.

it has been 6 years now, i go through various stages, have suffered several bouts of night time leakage, whih usualy wakes me as does the urge to visit the loo( of which i am a passionate loo visiter and toilet paper extrodinare) I know if i indulge in eating whatever takes my fancy regardless of quantity and time of day that i will pay the price.. for example, my moms cooked sunday roast.. a late night curry followed by pudding etc.. that i will without doubt run the risk of night visits to the loo and worse case some leakage.. all of which providing i am alone and at home i can manage because i have only me to worry about.. but having found myslef single again a few years ago i have found dating a real issue... so i then find if i do not eat say past 3 or 4pm.. i can usualy get away without going to the loo until the next day... but thsi is obviously not very healthy to do long term, but for the odd night workd a treat and really does relieve any embarresment from a noisy and smelly treat for any companion!

red meat and any meal that looks rich has alarm bells ringing for me as does most of the foods on Will's 'to avoid list'.

My bum does get sore when i have had increased Bm;s and i use SUDERCREM ( not sure if thats how it is spelt) this is a barries creame and instantly relievs any soreness and itching. Other than that i do not take any other meds at all. I wouldnt change having this pouch for anything other than post illness... it has saved my life and im blessed it has worked as well as it has with only a few incidents of pouchitis.

I know when i am suffering why i am suffering, i may not be able to say exactly what food has caused it but usualy it is eating way too much for the piouch to cope with... and included foods of the not to do list somwher along the line. I just really wished i could find a cure to stop the BM's being so noisy... if it wasnt for that i could cope with going in the night and several times aday... i have no problenm people knowing i need the loo.. i just dont want them to hear or smell me.. haha!!

Keep doing the pelvic floor excersizes both men and women.. it is vital to the continence especialy for us in later life!...

Please write or caht back if you have any more tips to share.. my faves list is as below...

No late night food
No food if needing a toilet free evening ( drinks proven ok )
baby wipes ( a must! to be fresh)
Barrier creme
Flushing when exploding ( to minimise sound )
telling people openly of your condition ( eliminate questions as to WHY you are always on the loo )
being greatfull to J-pouch surgeons and not angry with your body
realise i am not alone


Much love and ultimate respect to all of you reading this..

24/10/10... & hoping to still be positive when im 90.. see you here x

Hi - I have found this site really helpful. I have had my pouch since 2003 and apart from some pain due to a narrowing where the pouch has been connected to my small bowel, i have managed reasonably well with my pouch.
However, I have recently had an abscess and fistula and had to have 3 operations to try to get it to heal. I have also had dilatation at the connection of my pouch.

I am now experiencing accidents. I do not get any warning that i need to go and i do not have time to get to a loo. I am concerned regarding returning to work as i do not get any warning that this is going to happen. I can go some days where I am fine and do not have any accidents and then, like today, i have had 4.

I was wondering if anyone can give me any tips or advise, or if anyone else has had dilatation or fistula surgery and if this has caused any further problems.

I am wondering if i should consider having my pouch redone or returning to a permanent bag. Has anyone else had their pouch redone for similar reasons and did it make any difference? Do you think that because i don't have accidents all the time that this could be due to diet? or is is possibly pouchitis? (although when the consultant did the dilatation and EUA last week he said it looked fine).

Also do people find that their pouch plays up after eating certain foods straight away or does it sometimes effect them the day after? I have only had toast with ham and cheese for lunch and then lamb chops for tea, although i did have a curry last night, although i slept right through the night afterwards!

Thanks for your help, good luck everyone x

Hi, reply for Jo....

Hi Jo, Although i can offer no real solution as i sometimes dispair with my bum, i can go for weeks and weeks with no real issues and then as you say eat terribly or the wron foods and sleep ok with no leakage, however just the other night i hardley ate a single thing, yet woke in the night having had a bit of leakage... and to be honest i am always on my guard with it which is stressfull in itself isnt it!

So i am of the mind to think that sometimes the pouch or the opening must get inflammed and this causes weakness to the sphinkter muscle resulting in loss of control when asleep epecialy, and sadly not something we can prepare for unless we simply dont eat!

However i have been fortunate not to have experienced an accident post surgery during waking hours, i do get the feeling when the puch is full or im crampy and enough time to get to the loo, there have been a number of occasions when i have left it to the point where i have had a few lucky escapes though ;)

I had to have to puch stretched a year or so after i had ,had it but no other surgical intervention since then, a few episodes of pouchitis, which presents itself as tummy ache and general nuisance around increased visits, more urgency and soreness but ironically also at this time finding it difficult to empty the pouch comfortably resulting in going back and forth the loo several times in no time at all just to feel some relief.. is this what you are experiencing??

Antibiotics soon sort this out though...

Diet and quantity of food definatly for me impacts on pouch function..
evertime, every day.

Jayne

hello everyone,

I have a j pouch for 9 yrs now and after 10 years of uc, have never looked back. I have had a lot of kidney problems since the j pouch, and have started reasantly to do a lot of research on the subject and so came across this site. has anyone else had kidney stones or other kidney problems. I realsed that we are prone to severe dehydration and ou bodys have a hard time dealing with this, I have started juicing and try a 75% raw foods lifestyle, and am feeling much more energetic, as I sufferd from fatique. My bowels are well formed when juicing as compared to when I eat whole foods Has any one else tried this?
Luana

I highly recommend juicing, it's the only way I can have the more fibrous vegetables. You may also want to consider taking B vitamins for fatigue, B vitamins are normally absorbed in the large intestine so we become deficient easily.

I finally got around to adding dates to the comments as well as a way for people to confidentially contact each other through here. I hope you are all still finding my information presented here useful in its 6th year of being online :)

Yes Will, this site is awesome. I find myself looking at what others are saying at least once a week. My question for you and others on here is how are you able to juice? What do you eat with it? I have tried several times over the last few months to juice, drink smoothies and it just makes me miserable!! It causes my movements to be straight liquid and I am get camps. What can you recommend?

Thanks :) You need to eat something absorbant with it like rice, bread, pasta etc or just have it with a meal. Yea if you just drink the juice by itself it will go through you.

I've had my j-pouch since 1981 (29 years). At that time, it was a very novel procedure and I had it done at the Mayo Clinic. After I recovered from the procedure, I wasn't given any follow up instructions for seeing a gastroenterologist for any type of screening. I have not been to one ever since then. Are j-pouch patients told to go in for scheduled follow up visits (annual, every 5 years etc.)?

Kay,

I have only been back to my surgeon once since the proceedurefor dilation. I have had no follow up in alomost 7 years. and i do not get referred. i often wonder if i should make an appointment just to get checked over so i can have peace of mind all is still well down there! I often feel fatigued and i will try juicing i think... i also do not at present take any supplements.. but really should consider this too i think... In addition to vit B .. does anyone suggest anything else??

I personally have to go in once a year for screening as a prevention of cancer. This is because I have FAP and therefore I will always have the chance of developing cancer in various parts of my body, including in the 2" of rectum that was left. I am not certain about people with J-pouches in general and what is required.

Hi guys. i'm so touched reading all this. i've had a j-pouch since May 2000/ recurring pouchitis, fistulas, abcesses... here are a few things ive learned.
Pouchitis goes away for a short time with Flagyl and even Cipro. once gone you have to use a good pro-biotic to take the place of the good bacteria that was lost with the antibiotics. i recently learned this from a top homeopath and am now on VSL3 and looking good. Unfortunetaly a lot of damage was done over the last few years , had to fight off abcesses , was hospitalized 4-5 times with minor surgeries to remove/drain the abcesses.
Now i have fistulas that are causing incontenance and looks like the sphincter/hole is getting smaller. surgeon said i have to get used to the idea of a ileostomy someday unless i can get used to a Medina Cathethar. Has anyone used this for J-Pouch?
I was just told that one of the reasons of the complication with our JPouches is that the stools are not being completely drained when we go to the washroom... stool stays in there and, in his words, 'festers' inside and promotes Immune Response (that is the basis of our problem)...he says other patients swear by it.. they saved they're pouch and did not have to get an ileostomy because of it.
Anybody helped with Medina Cathethar? i would appreciate any advice.
thanks.

Reply for Jo...
Jo, i think you have to get checked out for Crohn's... if you get fistulas or abcesses...its probably crohn's. i'm on Humira and Imuran for that.
after 8 years of problems with my pouch, they realized it was crohn's and i should not have had a jpouch to begin with, though im glad compare to an ileostomy.
if anyone gives us a heads up on the Medina Cathethar i think you should try it too...it will help with the fistulas/abcesses.

Well I have an update. I started taking vitamin B12 & Acai tablets a couple of weeks ago and I finally have more energy and I feel great, with the only side effect is I urinate a lot (if that's what you want to call it) AND I have finally been able to lose over 10 pounds.... and counting!! I hope that this finds all of you well.

I also forgot to mention that I did try some flush-able wipes but I don't recommend them because they seem to be scented that that stings, especially when you are a bit "raw" down there... so not a good idea in my opinion. I will keep looking, but wanted to post my result.

hi have had a temp. ileosomy 3 months ago for rectal cancer have had chemo and radiotherapy pre operative and now having chemo post op till mid november. I see my surgeon in mid november to find our when i will be scheduled for my reversal and get the Jpouch going and the bag OFF. Having read all the posted items on your site I am wondering what sort of questions I should be asking my doctors and is there anything I can be doing for my self to prepare me for a life with a Jpouch. I am having probiotics daily, a nutritional supplyment (Fortisip by Nutricia ) I live in south australia so this suppliment may only be here? i dont know.Like other people find mushrooms a bit of a disaster so I will be giving them up from now on I think. My sister has had UC for 25 years and is in a bad way she has not had surgery yet she is too scared. Do I put my hand up to have reversal surgery ASAP and get on with it or wait and ask a lot more questions? i find my self at one of those life CROSS roads.I only get 24 hours or less befor my bag starts to come adrift, the chemo doesnt help the digestive tract at ALL! but thankyou for your site is is helping get a picture of where I am at in reality and not just what the doctors want to tell me. keep up the good work and hi to all out there with all the same problems

Just wanted ya'll to know how blessed I feel to have found this site and I am not alone! Will, I sent you a personal message with a few questions, but after reading through the message boards I feel a lot of questions have been answered. I would still love to have a dialog with you and let you know personally how much this site has and will help me. I am a musician and found music to be such a healing and healthy outlet for dealing with a j-pouch life style. I wanted to share a link to my band in hopes it will as helpful to you as it has been for me: www.hauntedwindchimes.com

Thanks Again!
Much love and light to all of you.

hi i am due to go in for a reversal of my j pouch on 3rd nov due to persistant problems i was using the loo over 20 times a day and mostly at night i never got any sleep i was trying to hold down a managerial job and was very stresssed it all became to much and i requested to go back to a bag.....i had to come out of work and my doctor recently put me on a tablet for the rectal pain i was having which apparently is an antidepressant drug called amitriptyline that is used for pain relief and somehow a lot of my problems have subsided ......now im wondering was it all stress related ....does anyone know if this is possible ....i dont be up as often my rectal pain is subsiding and dont know if i should postpone my surgery...

please see my comment above and contact me asap before my surgery i would be most grateful.

Hi Pam..

having read your entry, im sad that you are due to have a reversal of your pouch.. As i fear this will be irreversable for you? you dont mention how long you have had it?? if the tablets seem to have helped maybe you could try other things as a last ditch attempt before going for your surgery.

Stress definately without doubt causes more problems.. but for me it appears to be food in general, as when i dont eat very much my pouch is a breeze!...

Jayne

Hello Zal,

When I look your story you could be my brother.
Have my pouch for 15 years now.

Now I live “very” low carb, because my bloodsugar rise after so many years of to much Carbs.

I eat 50% raw and 50% cooked greens I start every day with a smoothie made of fruits and greens(with 2 bananas, kiwi and some berries ) . Vitamineral Green I also use it the smoothies. And all kind of greens which are cheap when I buy them (everything is BIO).
It took a few weeks before my body accepted the greens but it started after a few weeks. It had no choice, nothing else was going in. I also used enzymes to start the job (still using them).

So everything goes quiet good now. I also did juicing, but to much work for me, smoothie works okay for me.

I am missing “magnesium” in your program, I was sleeping very bad, because magnesium deficiency. And also take extra vitamin D around 4400 IU every day. Not much sun over here so we need the vitamin D extra.
I also make my own yoghurt with “Acidophilus”and soy milk.

Still searching for a better way to live.

Recently I run to 4 miles in 32 minutes without a prepare. So it’s going quiet good at the moment .

Nice site BTW, over here in the Netherlands we have a Pouch-forum.

Good luck Alex

I hav had my pouch 5 yrs and have been told by my surgeon that all is not lost i can go back to a j pouch ...but i lived with a stoma for 3 yrs before i got the j pouch and feel it was the better option my j pouch caused me endless problems and i am 57 the thought of perhaps having to wear nappies in my later years is not what i want thats why i have made this choice to return to a stoma and if stress does play a factor in these problems then im always going to have problems as life is full of stress these days .

Pam, what are your problems?
When you have deficiency you will get problems, that is sure. Take every day yoghurt or GOOD BACTERIA TO PREVENT DISEASE in your Pouch.
When you run out of magnesium in your body, you will get stress and depressions. We need extra minerals they are very important for us pouch people.

my problems are endless visits to the toilet i see the clock every hour through the night i get little sleep ...i have no energy and haveleackage in the front due to a fistula to many problems to name...right now i need a long rest and get back to normal living

Could you write down what you eat during the day.
Start in the morning. The whole day please!!

breakfast porridge or rice crispies ...lunch soup amd sandwhich...dinner potatoes meat and cauliflowerans carrots ....sometimes my mneals could be a freezer dinner like sweet and sour chicken etc but all in all i dont eat that much i dont have a huge appetite although i used to before my problems started.....i like low fat yogurts ....i nibble on crisps or cheese and crackers ....dont eat loads of fruit but i do love grapes cherries and plums and strawberries....i dont drink fizzy drinks mainly water and tropical juice sometimes iced tea.

Hello Pam,

First get,
Solgar Advanced 40+ ACIDOPHILUS
NOW super Enzymes

You can try the next thing:
I miss a good base for your pouch, I don’t know if you have a blender.
Start your morning with making a smoothie
Put some water,lettuce, a few (straw)berries, 1/2 avocado, yoghurt, banana and three capsules Solgar Advanced 40+ Acidophilus in the blender.Blend about 1 minute on high speed(till everything has one colour).
Take one tablet Now super Enzymes after the smoothie. You can also use a part of cucumber in the smoothie. Don’t drink more than 1,5 cup of the smoothie. But chew…..chew the smoothie so it gets your own enzymes too.

Lunch: yoghurt with three capsules Solgar Advanced 40+ also some porridge or buckwheat and also three capsules Solgar after eaten this take a NOW super enzymes. “Don’t eat to much” and again chew……chew again not more than 1,5 cup.

Drink green tea a good brand and mineral water without bubbles during the day.

Diner same as in the morning. Again not more 1,5 cup.

No cheese and no tropical juice, avoid E621 and aspartame, use stevia as sweater.Keep the carbohydrates low, only porridge or buckwheat.

When peace is back in your body you will find your own way in the world of fresh smoothies.
Avoid E621 it is in lot of foods nowadays.

Try this a few days! Let me know how this is going.

Also take a nice walk after everything you eat. At least 2 - 3 miles.Don't sit down!!!!!!!!!!!!!

I had my large colon removed in2004 due to colitis, my rectum is still inflamed. But remembering how difficult the operation was I can't make myself to go for another operation. I am seeing the surgeon every year. Before he offered me j pouch operation, this year he said he will not do j pouch, he will remove my remaining rectum and anus. I don't understand is it to late for j pouch after 6 years. he said I should go for another doctor if I want to have a j pouch. may be the muscles are weaker after 6 years of not using them properly? I am used to have a bag. But somehow I can't decide what to do? It seems most people are happy with their j pouches. I am 53. I did ask for operation of rectum removal only, but dr said anus also has to be removed. The thought of not having an option of j pouch later if I want to is depressing. On the other hand life with a bag seems easier than with a j pouch - many people have problems. I don' know what to do. Can anyone compare life with a bag and a j pouch? Thank you

Hi Zina i can tell you i have had the bag and the j pouch i am going for surgery on 4th nov to return to a bag i am 56 the bag was easier
j pouches are tempermental like haveing colitis at times without the bleeding ....pouchitis is mad always searching for the looo and night time you have to wear pads because of leaksmany other problems i decided to look ahead in my later years i dont want to wear nappies the bag is more dignafied dont you think .

Hey Will and other jpouchers. I'm 32 years old and I've had my jpouch about 1 1/2 years now. I was reading through some of the posts and wanted to share a wonderful product I found called Tush Wipes! The perfect name! They are individually wrapped flushable wipes with aloe, Vits E,C & A (they also make medicated wipes now too). They are AWESOME!!!! I don't work for the Co, although I did talk to one of their reps about how I could be a great sales person for them! =)Needless to say they didn't hire me. But seriously, these things are great because I can throw a few in my purse (they can hide in a pocket too), and I keep them next to my toilet in an old wipes container. The website is www.PureTouchSkinCare.com. Anyways, that's my little helpful tidbit of information. Thanks for putting up a wonderful website. Hopefully my bit helps a fellow jpouchian out!

Every silver lining's got a touch of grey,
I will get by I will Survive =)

Got my pouch in 1982. excellent surgeon and few probes except that I ate as I always had and that eventually resulted in a fistula. Not on any meeds and never was after the take down. Living in japan where an x-Ray tech friend with uc says that if he smokes it puts him in remission. First I heard about the marijuana.

That would be "probs" and "meds". Lol

Hi Pam, you are right the bag seems more dignified than nappies. I hope your operation went well. Is your ileostomy permanent now, I mean is your anus removed? Did they offer you to keep it for any case?
Hi Cherie, could you tell me if you felt any restrictions with a jpouch, like always being aware of toilet location or night time leakage. How many times you go to the toilet? Thanks

Well I haven't seen any recent posts-- Just wanted to wish everyone a Merry Christmas & Happy New Year!

Tomorrow I go to see my surgeon to organise a date for my final operation for getting a j pouch. As I read all of your comments I wonder if I should go through with it. Right now I am the healthiest I have ever been. I don't take any medication. I work full time without too many complications (the odd leaking bag). I eat and drink what I want, when I want. As I read I can't help thinking that if I remove the ileosotomy it will be like having UC again. Anyone got any advice for me!? Should I, or shouldn't I? Please help!

I just now found this website. In 8 hours I will be going to the hospital to have my ileostomy closed after having it for 7 months. I had a total colectomy in May and two weeks later almost died after an abscess and two portal vein clots and I went into septic shock. I am a critical care RN and work at the academic medical center in which I receive my care. I almost died in the unit that I work in. On Nov. 10, I went in and had the first part of the j-pouch constructed and a temporary ileostomy. I have been battling skin issues since I came off prednisone in July. I am lucky if I can go 2 days without having the change the pouch because it will not adhere to the red, raw, weepy skin and have tried every product, cream, powder, medications for my skin. It turns out that I am allergic to the adhesives in the products and the barrier spray I had been using. Because of this, my doctor was willing to see if my pouch was healed in 4-5 weeks instead of the standard 8-12 she normally waits. I went in on Monday for the barium x-ray and it was healed! I have lost 15 lbs since having the surgery 5 weeks ago. I have to go in once a week for 3-4 liters of IV fluids because I am so dehydrated. I am excited to have the bag gone and off my body. I don't know if reading this was the best thing for me before my surgery. I am so nervous now. I trust my surgeon, her nurse practioner and nurse (both of whom have become good friends) and know that they will do everything they can to help me along.

After much searching on the web. This is probably the best and most informative I've found. I've recently left hospital after having my colon and rectum removed, due to a cancer in the lower bowel. I've now got and ileostomy and planning to have the J pouch in about three months. I'm not sure about any more chemo, but predict the Oncologist will probably put me on a mild dose for a month. The pathology report showed that the cancer was localised and not in any of the lymph nodes in the bowel. Yippee, big relief.
The issue I had is the lack of information on the J-pouch regarding cancer patients. I stumbled onto this site after many searches on Improving BM after surgery etc. I knew it would be a long path for recovery but I must admit, I did'nt think it was this much. I live in Western Australia, 51 yrs old and very active and can see some lifestyle changes ahead.
It has been really good to read all of the blogs and help understand what I expect to go through. I'll keep in touch and spread the word to others.

Sorry I have been away visiting family. Julie & Lisa, I hope you have had a good surgery and are recovering well if that was the route you decided on. It's up to each person to make the decision for themselves on whether to do the jpouch; I made this website just to put as much information out as I can so people can make informed decisions.
I think this website is the most informative one for a few reasons:
- I've gone through the whole process myself
- I tried everything known at the time when I had UC
- I'm always looking for ideas/ways to improve the condition
- I'm not out to make money, this site is a public service because I genuinely want to help people. I pay all the web hosting costs out of pocket and it feels good to help others in need

I hope all of you are getting a lot out of the site and I appreciate all of your contributions. I really want to foster collaboration about UC because it will help all of us to be a community.

- Will

Hi Will, It's now quite a few months since I wrote about my history. I am the person with FAP and had a total colectomy 42 years ago and am now 70. I was waiting to go into hospital for a J Pouch or ileostomy because cancer was found in the small amount of rectum that was left. Just thought I would give you the final account of the operation. I have now had the op. and couldn't have the J Pouch as there wasn't enough smaller intestine to join to the anus, so now have a permanent ileostomy. It is 7 weeks since the op. which went like clockwork.:). and I think it is much better for me to have the ileostomy and not to have to bother with another operation at a later date. The cancer was contained, so no chemo. and am now having blood tests once a month to check for any further cancer. I have the district nurses coming twice a week to help me position the pouch and flange as the stoma is a tricky one (it's a bit inverted) therefore a bit difficult to get correctly positioned, but am getting there and gaining more confidence each time. Have had to change a couple myself in between nurses visits, because of leaks and didn't do too badly, so it won't be long before I'm independent. I'm back to eating anything and everything as before and have been out shopping and socializing as before. So long as I now take my new accessories in a small bag, I'll be as good as gold. All going well I still have a few more active years left and intend to enjoy them. I'd like to wish everyone a very Merry Christmas and Happy New Year. My family and I will certainly be enjoying the Festive Season as we have been blessed once again.

After reading all these posts, I feel like I have things pretty easy. I had one step j-pouch surgery in June 2010. I feel really fortunate that I didn't have to go through several take down steps. It took me a good 8 weeks before I felt human again. My continual problem is burning and "ants in the pants" feeling around my anus. I've tried numerous over the counter remedies to alleviate this misery and the only thing that gives me relief without making the problem worse is plain ole Vaseline. My question is what is causing this??? Also, just in the last week, I've had a lot of leakage. Are these problems caused by my diet? I've already figured out that I can't tolerate citrus fruits. Any suggestions will be appreciated.

The burning is most likely from acidic or spicy things like pasta sauce, orange juice, lemonade, hot sauce, alcohol etc... are you eating anything like that? Also does taking calcium/tums help?

It's now almost a week later since I posted and I am home from the hospital and recovering well! I am so glad I decided to have the ileostomy closed! The surgeon told me my surgery went as smooth as can be and about 24 hrs after the surgery, I had my first bowel movement! By Friday I was eating a low residue diet and home on Sunday! I'm having a lot of pain and pressure down in my rectum but my NP told me it was normal. My skin is in rough shape where the stoma was but we are working on it. I am using cottonelle wipes each time I use the restroom and also apply Boudreaux's butt paste and I'm feeling pretty good back there. Tomorrow I have my first follow up appointment and I am so excited to donate all my old ostomy supplies to the clinic - felt so good to put them in a bag and be thankful to not have to need them anymore. I know its not even a week since the surgery, but I honestly feel like I have my life back already. The first shower was amazing. I am so thankful.

my name is indra, and see had just know surgery for the second time for the closed of ileostromy , and after the one month of time see is not doing good with food , and always complaints of some revolving in the stomech , and some pain is also there , see take only watarly food only , is is the hard time in my life time know at the age of 50
i have been realy turf for me in the night time when my wife dose not slip at all and , not taking the food in the day time . give me some good idea for me to apply on my wife , see is also very socking of all this heppen to hur , reply me to my mail adsak@ymail.com

Hi Sherry, I commented a while back that I discovered that any acid (citric or ascorbic) in food causes quite a problem for me. I absolutely cannot hold it if I am out when this happens. If you read the labels you cannot believe how many foods have this. Even some broth I made soup out of recently. Lots of drinks especially Latte drinks from Starbucks and McDonalds. The only drinks I drink out are water, coffee, and tea (it has to be fresh brewed and not a mix. It has cut my problems way down. Christmas has been more of a challenge eating many different items than normal.

Hi everyone, I have had my JP now for approx 14 years and have only recently in the last 6 years had a couple of bouts of pouchitis. I have tried quite a few things along the way of diet and find that gluten free, dairy free,no greezy or sugary foods is best, drink water only(room temp). I do get low in iron some times. I think exercise is important, even just walking, I do yoga too. I have done a lot of self work and find that managing your stress level is a big part of this balance. I would like to suggest vinegar on a make up pad as a wipe - it can sting a bit but it seems to heal the skin quite well and quickly and for us girls it is also good for thrush.
Also I take probiotics(diary free)which is really important for the gut. I think everyone is different with what they can tolerate and keeping a daily diary is a good start, maybe make it your new years resolution!. Hope this helps, Happy New Year....it does get better!

I have had a J Pouch since 1993 due to UC. No problems, I ate everything but Popcorn and coconuts. I went Vegan Feb. 2010 and at first, all was well. In fact, I had more energy than before. Now I have gained 10 lbs and I have no energy. Has anyone else successfully gone Vegan?

Just found this website (although I have searched for something like this in the past without success). I have had the jpouch (history of UC) for 21 years and have all sorts of problems ever since. That said, I would take the pouch any day over an ostomy bag. I don't understand the women who wrote that they are happy with their bags. I thought the bag was disgusting and demoralizing. I was married at that time and my husband used to degrade and humiliate me, saying that I was stinking up the house. There wasn't much I could argue back - I WAS stinking up the entire house. I used products that were supposed to help the odor, but they weren't much help. I am seeing a colorectal surgeon now and am scheduled to have a sigmoidoscopy in a couple of weeks because I've been having more and more urgency and liquid stool. Also having burning and itching so have to find out if it's due to anal fissure or stricture. I have had too many bowel obstructions to count (my guess is about 30). They finally ended after a section of small intestine was removed in an emergency surgery. I've suffered through an anal fistula and live in fear of ever having another. My quality of life isn't good. I don't know what to eat anymore. I'm not skinny as one might think. I think it's due to eating so much doughy-types of foods (bagels, french toast), which seems to be the only thing I can eat during the day that doesn't cause hours of sitting on the toilet. I work full-time as an admin and I can't do my job if that happens. Because I don't eat anything substantial during the day, I try to eat a healthy dinner. There isn't any meat, veggie, soup, etc. that will give me peace. I am on and off the toilet for the rest of the night - every night. I rarely get more then 1-2 hours consecutive sleep. I don't have "accidents." The urgency wakes me up and I sometimes can hear my own moaning as I wake during the night. It's wearing me down. I turned 58 last week. I don't know how I will manage this as I get older. I am so happy for the carpenter who can work long hours and was able to travel to Afghanistan. I do not wish to go there. I'm just amazed that he doesn't let his condition restrict him. I am so humiliated by my bathroom issues, I have made a very small life for myself. I turn down invitations all the time, and I won't pursue a love life. I don't know how to get around the fact that I spend so much time in the bathroom. I would like to find love and be married again. I am hoping this doctor can help me.

Dear Debbie, I have had an ostomy bag for 6.5 years and couldn 't make myself to go for another operation to get a jpouch. Finally I decided to have my remaining rectum removed together with anus. I understand you not wanting a ostomy bag. I was the same in the beginning. Hundreds of people have an ostomy bag and no one around knows about it. I wear largest one and wear it horizontally so it is not noticable. You can go anywhere and don't have to know where the toilet is. It is better to be healthy and have a bag. I assume overseas travel is easy with a bag - I spend one month overseas this year despite having inflamed rectum. My relative lived for half a year with us in our small flat. He didn't know that I have a bag. So it is not all bad with a bag. I am 53. I wish you all the best.

What a great site! When I'm feeling a little down about my J-pouch, I turn to this site and it makes me feel good to know I'm not alone and that there are others who can actually understand what I go through, such as the burning, the occasional leakage, the frequency of bathroom trips (8-12 per 24 hours), the social embarassments, etc. Debbie, you are lucky to be rid of your ex-husband, and I assure you that there ARE men who are much kinder and more accepting of our situations, and are NOT turned off by bathroom functions or even an ileostomy bag. There's someone for everyone in this world and it's different strokes for different folks. ; ) Will write more another time, but just wanted to say that despite my problems, I'm still very active. I bike, hike, swim, but unfortunately I can't always do those things at the spur of the moment. Not bad for 57. A lot of my friends now can't do those things because of arthritis, so it seems that everyone has limitations and suffers in their own little way.

Zina and Susan B - thank you for your responses and for sharing your experiences.
Zina, I am happy that you are doing well and that the bag is working out for you. I would like to know how you manage. My experience was so bad - my ostomy site was not nice and flat, so it was very hard to fit the wafer and bag. As a result, it popped off fairly often making a huge mess and causing me much pain due to the acidic matter burning up my already raw skin. I had to change the appliance sometimes a few times a day. The supplies were very expensive and not entirely covered by insurance, but the pain was the worst part. The site flowed 24/7 - no down time at all. The odor was unmanageable. It was also impossible to hide the bag in my clothing. I was 36 yrs. old when I had the surgery, and I wanted to dress fashionably. Maybe there have been improvements in the appliances since that time.
Susan B - my friend keeps telling me there is a lid for every pot and I do hope to find my lid soon! I believe there are kind, loving men out there, and I know if someone cared about me, they would "put up with" my bathroom issues. But how do I meet someone in the first place when they want to take me to dinner or out for drinks? The minute you feed or water me (haha), I have to head to the restroom.

I love this site. It helps a lot to know I'm not alone and there are people all over the world dealing with the same issues. It would be even more helpful if there were local meet-up groups. I live in a suburb outside Philadelphia.

Debbie don't get discouraged, I actually met my now fiance whom I've been with for 5 years *after* I had the jpouch. Of course it was a bit awkward at first, on our first date I had to run to the bathroom and was in there for a while... and it had to come out at that point about the surgery, jpouch etc. But she accepted me for who I am (and this coming from someone in their early 20's too). They are out there, don't give up!

Debbie, I also believe that there is someone out there just for you! I am fortunate as my husband and I have been together for 22 years and so he has seen me though good times and bad. I realized that is what "love" is truly all about. I have a wonderful man who during my transition between my colectomy and take down, was there and physically helped me bath and change my bag EVERY day!
It has been four years since my take down (I turn 40 in just a couple of weeks) and although I have a lot of the same issues as most of the people on this site have described, I am truly happy that I had the surgery. I guess what I am saying is that after a while you won't think of yourself in the same manor.. you will realize that the way you live your life now, is well your "normal" life and you will adapt. At least this is my reality. Each day is a new adventure and although I have to watch what, when and how much I consume I make the best of every day. May God bless you with the patience to endure your life and a partner who will gladly share it with you!!

Debbie, when it comes down to it, people fall in love with the personality. We're lucky that we can "hide" the part of us that is not exactly attractive, so we at least have a fighting chance of meeting someone and having them "fall in love at first sight", hehe. When you really love a person, their physical imperfections may even make them more lovable, know what I mean? When you don't love someone, the silliest things may irritate you. So when you're out in the social world, just be yourself, and you don't have to immediately talk about your j-pouch, just as someone wouldn't immediately bring up their personal problems. (I assure you that EVERYONE has something.) I know what you mean by having to go to the bathroom immediately after eating something. If I were you, I'd just tell your date that you don't drink - (you definitely don't need it to "loosen" up, lol), and that you're not a big eater, so maybe you can suggest an activity that you can do comfortably. Maybe bowling could be fun for a first date. You can talk, he can get a snack, and there are bathrooms there! Can you drink herbal tea without too much trouble? You can suggest just going to a Starbucks. Or maybe browsing through a Barnes and Noble for fun books. He'll certainly appreciate it that you're not suggesting expensive places. ; )
I also wish we can have some meetup group here in NYC. I especially would love to find a group of hikers, or any outdoorsy group, that I wouldn't have to feel embarrassed in front of, in case I get the sudden urgency to go. I wish I could get over my hangups, but I still have a hard time telling people I have to go to the bathroom!! I very often suffer silently until I get home.

I've had a jpouch for 10 years now. I still go to the loo many times a day. I find that if I thicken my bowel movements, I get bowel blockages. So many foods I can't eat and now I have diabetes too, which really limits food intake, but can't lose weight. Wool fat is great for preventing anal skin burns,but is a bit greasy. I had many bowel blockages for years. They would pass after about 10 hours. - It was worse than child birth. Now I know not to rest when they come. I Take pain relief, and keep moving. I live in an area in Australia where summers are really hot. 40 degrees most summers, and that means dehydration is a big risk. I am happy to say that after about 8 years, I was finally able to fart without follow through. I never knew such a simple thing could make me so happy. But I can only fart if lying down on my right side - not very practical when out, so many trips to the loo just to passs wind during the day. Australia has no supports for j pouchers. what a shame. Talking poo isn't something you want to bring up with your friends too often. it makes them kind of squeamish. - having a good life - shirly

There is so much that one learns over time following J-pouch surgery. The learning curve seems, at least in my case, to never reach a plateau. Most of the time I feel good; however, if I don't get enough sleep or if I am under stress, then I find that my diet does not really help that much. I advise eating a small breakfast, a snack around 10 a.m., lunch, a snack at 2 p.m., and supper no later than 6 p.m. Of course, this is not always possible if one is working and can't maintain this course. B vitamins and potassium are essential, and I also use metamucil (generic brand is fine) to keep stool from becoming fluid. Hate to say it, but when I have a bowel movement that is solid and looks (yes, I think we all take a view of what comes out), I want a high-five at that point. In my opinion, the J-pouch is much better than life on steroids, pain killers, etc. I am glad I had the surgery, but I often worry about the future with this condition. Anyone else feel this way? Thanks for your time; I appreciate it a lot, and I appreciate this site as well as others where people like us can air their successes and the not-so-successful events in our lives.

What a unbelievable site.Will i take my hat off to you for what you have given people like ourselves that there is some sort of light at the end of the tunnel.My family have the FAP gene,my mother has had 80% of her bowel removed about 10 years ago she turns 80 in April and has not looked back once, she is doing so well.My brother had his operation 7 years ago he was suppose to of had an J pouch but due to complications that just about ended his life the surgeons removed all of his bowel.He has a bag and you wouldn't even know that he had one,besides needing a double hip replacement he is doing really well.
My sister had 80% of her bowel removed about 13 years ago and when she made an appointment to see a doctor due to something not been right down there,they found that there was a polyp that had been missed and had gone cancerous,the polyp was right at the entrance of her anus and because the camera was not con-caved it was missed. She died 6 months later.Please people that who have only had 80% of there bowel removed make sure that you do have frequent check ups with your specialist.
I elected to have the J pouch surgery, 2 days after the laproscopic ileostomy surgery there was a leak in the join and the waste was going into my stomach.After the code red in hospital i spent a week in HDU. I spent the next 2 months trying to find a bag that would stick to my skin,the first time the nurses tried we went thru 36 complete bag changes in 24hrs my skin was really raw after that.
With the J pouch that i have now(4 months)this has been a real eye opener as no one has/could prepare you for what i call a journey to a new life.I'm glad that I found this site as i have gone thru just about everything from going to the toilet 20 to 30 times a day to the sorness down below, trying to find the right diet,and the likes...I'm glad that I'm not alone and there is J pouches out there that don't mind sharing there experiences.I've have just come back from a check up and found that i have pouchitis,hopefully the antibiotics should clear that up.
Benji: I agree with you 100% about the learning curve it i feel is constantly moving all the time,thanks again to all you people sharing your experiences, i hope that one day we all find/reach that plateau of health.

Thanks for the encouragement Des! I have been considering adding email notifications when other people post so you are updated. Would this be something everyone would like to see? Also if anyone has any suggestions for the website I am open to ideas.

Hi Will,I think that would be a great idea,going by the blogs that you have received there is very little "solid" information about the J pouch out there,your site is very unique in how you have put it together.the great thing about it is that with experiences that everyone has had and what you have inputted,one can choose/pick something from suggestions of what to/not to eat or try some of vitamins and pro-biotics that have worked for other people.

I never respond to these things but i am so moved to share my story. I will be 27 next week and I have been living with a J pouch since age 17. My original diagnosis was Chronic Colitis and my doctor told me the only cure for Colitis is to have my entire large Intestines removed along with my anus and apendix. I remeber the doctor telling me we have to make sure this is Colitis before she would agree to giving the referral to the surgeon. After all the results were in it was a go. The summer before i turned 18 was the start of the Jay pouch process. I had an iliostomy for 3 months while the construction of the j pouch healed. Post surgery was tough because my insision split wide open. my insision started from the top of my pelvic bone to the top of my belly button. Get this, the doctors couldnt do anything about it because if they were to stich it back up it could cause infection. My mother had to clean it stuff it with gause saline and wound gel until it heald from the inside out. It was crazy because i remeber seeing all the layers of my skin. Another complication was with the area around my stoma. The stoma created my skin to be concave wich was difficult with trying to find the right iliostomy bag. Bile leaked on my skin around my stoma sometimes every day. Those three months were a test for me mentally for sure with the pain and discomfort. After the take down surgury and some recovery time I could tell a huge difference until shortly after...two years I finally thought to myself i should be having less bowl movements. they were geeting to be almost every hour during the day. Since I was over 18 i couldnt see my original doctor. I found another doc and he diagnosed me with pouchitis. he started me on a high dose of cipro wich helped a bit with my symptoms but I would continually have to be put back on it because as soon as i ended the cipro i would get another flare up of pouchitis...i went through this for 7 years. Finally I went to my doc an told him the stomach cramping was so bad it felt like my all my insides were swelled up. After a promethus blood test and the pics from the oscopy revealing many angry flared up areas throughout my small intestines, i was rediagnosed with good ole Crohn's. He started me on imune suppresents Humera and imuran wich i only took for 3 months due to the fact i moved and havent found another doctor or really even cared to get treated. I am depressed tired I dont have the want too's any more. All I want to do is rest and some days I go up to my boyfriends mothers house we live on the same property. Most days it just me and my dogs until my boyfriend gets home. He gets frustrated because i have trouble keeping up with the daily house stuff, which i dont blame him. My problem is i cant eat regularly and i am on the verge of dehydration all the time. With no job I do not have health insurance, the first time my entire life without a job or insurance.I am definitly in a slump in my life.....WILL I EVER GET IT BACK. Oh and I recently started smoking pot in the past month and find that it greatly helps with the stomach cramping and makes me eat too.

hello! This is such a great site. Thanks so much Will. My husband just had the J pouch surgery. He suffere from UC for several years and on one of the flare ups, he did not respond to the steroids. He was in the hospital for one month and got septic shock and they did emergency surgery to save his life and they took out his entire colon. They did not have time in this surgery to do the j pouch as his life was in danger. Near death actually. HE is lucky to be with us. He lived with the ostomy for a year or so. (NOt bad at all! FOr those of you who have to live with the bag, it does have a lot of benefits and you do not have to run to the bathroom a lot... )This past October, he had the reconstruction done and was told to wait for 3 months to do the actual "reconnect" to make sure that all was healing well. He just had the final surgery on January 17th. It has been a little over a month.
OK..so..I have read every single entry on here and I have learned a lot. I am urging him to focus on his diet. However, my big question is this...he is having terrible pain. It is inside his rectum, and it hurts when he sits down. He says it feels like he is constipated, but when he goes to the bathroom, it is loose. The Dr. told him that this was normal. He just had surgery and is going about 8-10 times a day and 4-5 times at night. .He also went through the terrible rash, and irritation at first. We expected this, as he had not used his rectum for over a year. I personally think that his rectum is just sore because he has not used it for so long. It was over a year that he lived with the ostomy bag. He is not getting sleep at night, he is in pain all the time and he says he gets dizzy when he gets up fast. HE does not have pain in his intestines, so I am not concerned about Chrohn's at this point. I also am hesitant to think it is pouchitis, bc the pain is only in his rectum area (internally) Anyone who may have had the same experience, or has any kind of advice would be great. Hopefully it is just going to take time and each day he will feel better. I really like his surgeon. He does not seem concerned, but I live with my husband and I see how much he is suffering on a daily basis. I also must add that he does over do it in my opinion. He is a realtor and he leaves the house and sometimes works a full day and this is just one month after surgery!! I think he needs complete rest for a few weeks. Do you all think he should go and have someone look up into his rectum and and see what is going on?? Or do you think it is just normal pain that will go away in time. Thanks to all!!

Oh..I just wanted to add to all of those people who are worrying about finding someone who will love you in spite of your J pouch..it can be done. I love my husband more than anything in this world. MOre than the day I married him. This experience pushed me into a new career and I am in my 2nd year of nursing school and thinking about becoming an ostomy nurse.

I have familial polyposis. Colectomy 1981, Illeanal J-pouch 2006
I am 49 and have never had any issues until yesterday. I self diagnosed a partial intestine blockage. I am not bloated but I am experiencing strong intestinal cramping. May be a passing thing.
I take VSL3 once in a awhile. Anyone experience cramping. I haven't changed my diet. It is amazing that I too eat what is listed on the good food list above. I have not had a soda since 1992.
I am hoping to walk out the intestinal cramping. Not so good right now. PS. Love your website.

@Juli, that is really horrible you are going through so much shit. It has always pissed me off (almost to the point of emigrating at times) that medical care in the USA is a privilege instead of a right. I had to go to the ER between jobs (and thus with no insurance) this past year and now I'm stuck with a $4000 bill and threatening letters every week; that's just not right. The dehydration is something that comes with having a jpouch, make sure to drink water but also have food in your stomach when you do because otherwise the water will go right through you and wont absorb. Having family around to help out is very important and if there is any way you can get/afford health insurance please do, having the chrons/jpouch combination can get tricky. At several of my jobs I have been able to put my fiance down as my 'domestic partner' on the health insurance (because we're not married) and get them to cover her as well. And I can't stress enough the power of thinking positive, your body will respond to how you think; it's called the psychosomatic response in psychology. Best of luck to you and feel free to contact me anytime.

@Kym, yea going to work 1 month after the surgery is way too soon. It takes a while to recover! If you overdo it off the bat you can end up back in the hospital and have to start over again. After I had my ileostomy surgery, I went to a diner and had a burger and immediately got an intestinal blockage the same day I got out of the hospital and had to turn around and drive right back! I would definitely get the rectum checked out too just to be safe but it's probably a normal part of the healing process, it takes months to heal from the surgery.

@Joan, wow no soda since 1992, was your last soda a Crystal Pepsi :) What usually works for me with a partial blockage is grape juice and just moving around. Sometimes taking a hot bath helps as well, the heat expands things in there. If you are taking opiates (percocet, oxycodone etc), they will make it worse as well.

Zina-sounds like you appreciate all the good points of having a bag. I was very young and refused surgery until the pouch came along and gave me an alternative. Most of my probes were ironed out in the early years and all were all diet-related. The best advice my doctor gave me early on was to avoid eating after 7 pm. Do what feels best to you.

Hello everyone, this is Will Perone. I hope you are all doing well and I sincerely appreciate your contributions to the jpouch page. I have just added a feature that will send out an email notification when a new post goes up on the jpouch page. I hope you all like the new feature and I wish you all well whereever you are.

I live in Australia and am 60. I had UC diagnosed in my 40s and lived with it for 12 years before having J Pouch surgery. I am pleased to be rid of the uc and the allied threats. I have 6-8 bowel motions per day and that is very acceptable, but I am still troubled by excess gas, lack of stool formation and very annoying and at times depressing nocturnal leakages. Whenever I think I am rid of these, one come along to haunt me. I would rather wake up in time, but my brain is obviously not quite in tune with this yet, and my sleep must be so deep. What I think happens is that I pass wind and stool comes with it - not a good feeling. It is ok when I am at home and can deal with it, but I have issues whenever going away or staying with others. The worries are probebly in my mind only, as I find my friends are fully understanding and accept the situation I am in. I am planning an overseas trip later in the year and don't want this to diminish the enjoyment of that holiday. I am so thankful that my general health and strength are really good and the UC is a thing of the past. I enjoy the outdoors and can always adapt to the more frequent toilet needs. A spade and toilet paper and sanitiser are essentials in my backpack. Being free of drugs and infusions etc is really a gift. I think that my pouch is still adapting and learning its role, even after 2 years, and I see this in what others have written. Hang in there, if you are worried or anxious - it does not help. When I am really old and cannot look after myself any longer, I may opt to go back to the bag rather than live with such indignity, but that's a long way off yet and life is here for the living. Good thing we live in an age when such surgery is possible and there are support groups to help us.

Hi i am 57 and went back to a pouch after having a pelvic pouch for 5 years i have no regrets i am happy healthy and lots more energy and dont have a problem with a bag i had a nightmare for 5 years with the j pouch and i know i made the right decision to have a stoma again its great a lot more dignified than c onstant night time leakage and forever trying to find a loo and feeling drained through lack of sleep and nutrition ....good luck to all you guys with a j pouch if its working for you but for me it was a living hell .i am so happy now and back to living a quality life again .

Hi, I have had a pouch since 1982. The procedure was very new in California back then. After healing from the surgery and getting used to the frequent bowel movements and occasional blockages and bouts of draining...I was functioning fairly well. Recently I got very sick and dehydrated and ended up in the hospital where I had surgery to dilate my rectum which had started to close with scar tissue. I didn't even realize this thing of mine was called a J-pouch until I started doing research to find out why I am having such a time keeping hydrated. The information posted here has helped me tremendously!

Hi, I am a jpouch recipient as of 2002. First 1 1/2 years I had to deal with a fistula that developed through the vaginal wall...Let me tell you that was THE worst!! After taking two anitbiotics to clear it up it finally went away. My surgery was done in one step. I think looking back, it probably would have been better to have it done in two stages, for healing purposes. Anyway, I feel that the Jpouch has given me back my control that I didn't have with UC. I still go to the bathroom up to 10 times a day, but sometimes not that much. Depends on the foods I eat. I am not a good dieter, so I have no strick limitations...maybe carbonated drinks, ice cream, chocolate are the worst. I had a big problem with the butt soreness for a long time, but I finally got over that and only use Cottonelle wipes in the bathroom, and a antibiotic ointment if I tend to have some major irritation which you can apply just inside the anus. Sounds gross, but that's what the Dr. odered and it works for me. Lately I have been having less frequent trips to the bathroom, and the stools are watery. I am concerned that I may have a blockage, any recommendations to get things moving???I have cut out caffine and I am wondering if that has anything to do with it. Also, I recently had some blood work done and my liver functions were high, in the 150's. Does anyone know anything about this? I really have not been back to my dr. since my fistula has cleared up in 2004, and was wondering if anyone goes regularly to have there blood drawn to check for liver enzyme levels??
This is a very good site, I am glad I found it.Thanks Hope to hear from someone on my issues.

The amount of times you go to the bathroom will vary over time based on a lot of factors: diet, stress, irritation, etc. If you are having pain and there's just watery substance coming out then definitely get it checked out though. Personally I don't get my liver enzymes checked, was this a recommendation from your doctor for some particular reason?

Hey Will, thanks for the response...Actually, I had applied for life insurance and the blood tests came back that the liver enzymes were high. So, of course, they denied my application. So, I am assuming that this isn't good. As far as the stools go, there is some solids, or peanut butter substance, always tell when I eat salad... no pain, just more watery. My weight has increased since my surgery, of course that was 9 years ago and I am 53, so menopause is contributing to the weight gain. But all in all I feel pretty good. I did start up the coffee half caf drinking again, I think that that keeps things moving for me, as the past two days it has helped. Do you go to your Dr. on a regular basis for checkup's?? If so what does he/she check for? I have a Dr. appt. in April, so I guess I will know then what the deal is...thanks..Pam

I am a Registered Nurse and 15 (and 1/2) years ago I had the J-Pouch procedure- and it gave me my life back!!! I was 28 years old at the time.. I had been HORRIBLY sick for 6 years & had never even heard of the Jpouch- even though I was an ICU nurse of 5 years. In the past 5 years I have worked with Jpouch/UC patients post-op from surgery, and unfortunately, have worked with the ones who "didn't want to do it" and were being admited for Colon Ca- membranous throughout the entire Colon! This makes me sad b/c I certainly would never kick someone when they are down, but all I can think is "why didn't you listen??"
I still have days of adhesional pain (a monthly period contributes to this mostly!) and I have days where I have peanut butter consistency stools, and other days pure water... on "high output" days I know to drink more.. and drink things with electrolytes.. the bottom line is, we will never be fully "normal" again.. we had a HORRIBLE disease that can take lives if not gotten under control. My scar begins approx. 2 inches from my breast bone and descends to 2 inches in my "fur"/pelvic area... and then there is the ileostomy scar.. but ya know what? I am ALIVE... I am gassy at times.. and every now & then I still leak at night (although very rare- thank God!) but to look at me, noone would ever know I was ever as sick as I was.. and I know all of you can relate to this... these past 5 years working with these patients has made me realize even more just how lucky I was/and still am... and when I tell a patient what we have in common-- they seem relieved.. and then to see them come out of surgery and indure the same pain that I (we) did humbles me over & over again... 4 years ago I had to start monthly B12 injections (the terminal ileum involvement inhibits absorption after 8-10 years) and yeah.. it's a pain to remember and do it... but once again.. I am Alive and thriving... I hope all of you are the same!

Oops.. one more thing.. forgot to mention that I did have to go in to the hospital for 5 days after a spontaneous bowel obstruction (a loop of bowel just twisted & dialated- for who knows what reason!) but it turned itself around without surgery...scar tissue is something that develops naturally after surgery- regardless of what we eat or don't eat-- it is the healing process and some of us scar worse than others...and if there is ever a GI bug going around.. I pray that I wont' get it b/c it usually means I end up in the ED getting hydration (amazing what 3 liters of IV Normal Saline can accomplish!).. but that has only been a couple of times.. I just chalk it up as another challenge conquered... b/c not everyone lives through what we have lived through... and I am so thankful to be one of the lucky ones!!!

Will, this site is just what us jpouchers need. At last, so much first hand information & experience from so many people going through the same stuff. Any other site I've visited or professional opinion I've sought always felt detached, missing the personal touch. Guess "all it needed" was someone willing, able and with the vision to get on with it and I hope you're getting all the good karma due you in return! My story, always been (in a typical blokey way)very happy with bowel performance, always thought it was indestrictuble! Bad news started with a bout of c diff following a bad reaction to antibiotics. Hadn't had any since I was a kid and if the doctor had taken then time to advise that they could cause a bacterial imbalance in the gut (as i understand all antibiotics do) with some potential side-effects I might just have lived with the bad cold a few more days until it cleared up itself. So angry how quick doctors can be to prescibe, at least here in the UK. Anyway...c diff cleared (after week in isolation in an infecdtious disease unit) but gut just went downhill after that. Told there is no link between c diff and UC but that's what happened. Approx 3 years of trying to get the UC into and stay in remission with thee usual immuno suppresant, steriods etc (as well as every natural approach I could find) and the drugs just didn't work anymore. A scan for brittle bones at 39 was also a wake-up call and a glimpse into the future I didn't like. Don't think my face could have ballooned anymore either!! Had 3 kids during this time as well and it really was getting tough on family life, so decision was made to go down the surgery route. Held it together long enough to get married abroad then went under the knife two months later. Developed a clot in portal vein and had a very high & active stoma oh, and MRSA for good measure) but pouch formation went well and reversal was just about bang on schedule 3 months later. In hindsight things didn't take too long to settle down. I didn't experience the instant hit of much improved well-being I'd been told about (from having a diseased major organ removed) but no steroids was almost worth it in itself. Support of my wife has been has been amazing (something I probably haven't done enough to show appreciation...easy to get caught up in "it") and an understanding employer alos really important. Things are pretty stable now 3 years on. Sometimes think I go too often, but then I read all the posts here and realise that we all think we go too much and 5-8 times a day is actually pretty good. Energy levels are an on-going struggle but I now know & appreciate just how common a problem this is and have so many things to try out. I clearly need to pay more attention to diet...haven't suffered too much but wonder how much better things could be....A couple of times a year I go off the rails a bit and need a couple of days sleep to catch up and, as so many blogs have testified to the importance of exercise and managing stress, its usually when I've not been exercising enough. To give something back, couple of things that work for me -> sore bum-hole.....I use a product called Germolene made by Bayer which is an antiseptic cream with local anaesthetic..apply after each visit, and wedge a cotton wool ball between the buttocks in-between visits in case of blips...-> bedtime routine involves a cup of coffee about an hour before..its on the bad list but inducing the response I try to avoid most other times helps empty any imminent traffic...then pop a couple of codeine phosphate tablets (another opioum deivative which i alos take x2 in the morning) lie flat on my back for 15-20 minutes in bed watching a bit of telly or reading a book...the flat on back thing promoted some late night activity while relaxing the mind as well...usually results in one final visit and a decent nights sleep. This site is now at the top of my favourites. Knowing there are so many of you dealing with the same issues and seeing what other things you are trying is such a positive......wish you all good health and coping

That's an interesting idea with the coffee before bed, I never thought to try to do something deliberately to empty things out before bed but that's a great idea! I think it would keep me awake however but maybe there is something else over the counter that would have the same effect and *hopefully* prevent night time bathroom visits.

hi guys,
i've had my jpouch for 10 years now and turns out i have crohn's not UC. long story short: its been hell.. dealing with Crohn's in a pouch. abcesses, fistulas..name it. very bad until i came across AYURVEDA..Indian medicine. changed everything. please , please find a Ayurveda Doctor near you and see them. doesnt cost much and there is no magic involved. Ayurveda has been around for a few thousand years and it works super well. Bloating went away immediately, that was one of the worst parts including the night visits.
anyways, i've read all the stories, had written few months ago. love the site. thanks Will. good luck to all ;)

Oh man that sucks! Misdiagnosis and erroneous surgery is definitely grounds to talk to a lawyer! But thanks for the tip on ayurveda, that was one thing I never tried out myself. I'll have to see if there is anyone around here that does that :)

I haven't been to the site for a while because I was busy being tested to see if there is something that can be done to give me a better quality of life. So I found a colorectal surgeon in Philadelphia with a good reputation. My colectomy was done Dec 1989. I wore the bag for 7 months to give time to heal, then was rehooked and for all these years, I believed that I have a jpouch and no rectum. Following a flex sigmoidoscopy,the new doc said she didn't understand my anatomy and I'd have to go for lower GI. She did say, however, I do not have a jpouch - or any pouch at all - apparently my small intestine is simply sewed to my rectum, which she says I have quite a bit of. Well, she might as well have told me I have 3 arms - it made no sense. She sent me for a lower GI. That was fun - the 2 young techs couldn't figure out my anatomy so they called in the radiologist, who couldn't figure it out either. They put some kind of contrast stuff into me, then decided that wasn't working so they sucked it back out. Then they tried barium but couldn't make heads or tails of anything. At one point, the radiologist asked the 2 techs if they had any ideas. Unbelievable! The outcome is that my surgery was a botch job. The design is so poor and prehistoric that medical professionals can't figure it out. I have some strange angulation that the surgeon could try to repair, but she said the surgery comes with the risk of possibly having a permanent ileostomy bag and that's a risk I'm not willing to take. Another issue...doctors have questioned for years if maybe I have Crohn's and not UC because I have had an anal fistula, kidney stone, hundreds of polyps - stuff that usually points to Crohn's. So I have been wondering if I've been misdiagnosed all these years and have been treated for the wrong condition. Mike, how was Crohn's finally diagnosed for you?

Debbie,
the fistulas are a very big tell tell sign.
excessive 'pouchitis' is another. there is no real/hard way of proving the diff. you have to figure it out with the symptoms.... but if your 'pouchitis' keeps coming back and you get fistulas... its not good. if you dont have these recurring symptoms , you're looking good..despite the bad surgery. :)

This page is getting quite long, do you all think I should break it up into pages or do you like seeing the comments all in one screen and being able to scroll through them? I can do either way.

I was diagnosed at age 17 with Chron's disease and from then, I was put on many meds. I was on a high dose prednisone (which lead to the "Moon Face", weight gain,hair loss, depression), Remicade, and many many others, my body just didn't want to react to these meds and be put in remission. My doctor later re-diagnosed me with UC. I remember being so upset that my doctor mis-diagnosed me....but now I am so thankful that He did because of the chance to be able to be "cured". I had surgery to remove my large intestine,rectum, and appendix at the end of age 17, my senior year in High School. I have been living with a J-Pouch for 5 years now. I can remember the pain I was in when living with Ulcerative Colitis. It took over my life. When I had to go to the bathroom, that meant NOW!....or else a HUGE accident would occur. These accidents happened so frequently that I had to finish my senior year in high school. When my family and I decided that I should do this suregery, I remember waking up from the surgery saying in the recovery room, " I'm so happy!!"...and I really was. This surgery has been a miracle in my life and I feel so blessed that a doctor was able to save my life and save me from the possible chance of getting Colon Cancer.
I do have bad days where I have re-occurences of pouchitis. Sometimes this will happen once in a couple of months or once a month or not for months at a time. I can (most often) tell when I have pouchitis because I have the symptoms, ie.abdominal cramping, urgent frequncies to the bathroom, and blood. When this happens I go on flagyl. I was daignosed a couple of years ago (not sure the exact name of it) of vitamin B12 deficiency. I get a B12 shot every month. I also take probiotics every day (acidophillus) to help with my immunity.
Last week, I just went to my yearly follow up appointment to see my surgeon (well now my new doctor b/c my surgeon recently retired) and he checked things out. He told me I have pouchitis, which this time around,I wasn't 100% sure that I could because I didn't feel the cramping like I normally get. He put me on cipro and flagyl for 10 days. He told be there is inflammation in my j-pouch and if this doesn't get better I will need biopsies done. He also said to not cancel out the possible chance that I may get Chron's disease...which is very disappointing to hear.
I asked my doctor what the secret is to what his patients do to be successfull while living with their J-Pouch. He told me everyone is different and reccomended me that a patient of his blogs online with those who have a J-Pouch (he couldn't remember what the website was) and to go online and to google "J-Pouch" and I could find a blog support group. So here I am!! :) (not sure if this is the one he's talking about but it's great!!) Reading a mojority of your guys' blogs have given me alot of insight to start writing down what I am eating so I can see what my body will accept and not accept so I won't have the frequent bowel movements. So, today I would like to put this to the test and take some of your advice and write down what I eat so I can figure out a diet that will fit me needs.
Thank you to all who shared your stories! I love the support! :)

That's great you are happy with the decision, the surgeon that did my jpouch was in Hartford, CT; his name was Dr. Cohen so I don't know if it's the same surgeon or not but welcome to the community :) If you have any suggestions to make this website better let me know; it's something I provide just as a public service :)

Thanks Mike. I am going to see a new GI doc to see if she can confirm or rule out Crohn's. I'm half hoping I have it, then new meds would be open to me. I've taken many rounds of Cipro and Flagyl for pouchitis. Flagyl makes my feet vibrate so I have to be careful not to be on it for long.

Thank you Will for keeping up on this site for us. I don't mind scrolling down but if you think it's easier to make page breaks, we will go along with your choice.

I'm with Debbie.. I don't mind scrolling down. What ever you choose will work for me. It's nice to know that I can bring this site up every now and then and see new posts. It's also nice to have a group of people that I can relate to in this BIG world! Awesome job-THANKS

HI, This site has been very informative. Thank you all. I just met with a surgeon Friday, also in Hartford, CT and will be having the 1st part of the operation for the j pouch in May. I've had UC since I was 23 yrs old. In 1991 I was diagnosed with colon/rectal cancer. No surgery was done, only chemo and radiation. I have been cancer free since. However, my last two colonoscopy procedures showed dysplasia, so surgery, I was told, is the next best step. Your site gives me some idea as to what to expect. Since I am still in the anticipation stage of what the surgery will be like, I was wondering if anyone could let me know what their experience was like. What were they asked to do in preparation for the surgery? What type of recovery they experienced? For example, how long before they were able to function in their home without help and how long before they returned to work. With the number of BMs per day, that has been mentioned, it seems almost impossible to return to some jobs, such as teaching high school, where going to the bathroom on short notice, so to speak, will be a big issue. That worries me very much. Any input would be very much appreciated. Thanks

hi i was just reading jeff`s comment i have a jpouch with a year now and got pouchitis just after the op and still have it, well its better than it was but its very tough at times to deal with it, i was taking flagyl for a year which are hard on my stomach. i am really glad i found this site to compare my problems. I get very bad gas and it is down to what i eat have u any advice on what none gassy foods not to eat?? And just getting back to jeff i was going to the toliet 30 times a day at first and thought to myself i want the bag back for months but it will get better for u.

Laura you will be going a lot at first but it will calm down and you will be able to hold it in unlike with UC. The urgency to go to the bathroom in my experience is directly related to if you eat gassy foods.
Some foods that cause gas (this varies from person to person): milk, beans, soft cheese, garlic, broccoli, high fiber stuff...
Also swallowing air when you eat will cause gas

Laura:
I had my surgeries two years ago. I also teach. I did not spend as long as some suffering with UC. After 18 months of not responding to any medical treatment other than high doses of prednisone, I chose suregery. While I still have issues with food, it is managable. I have noticed that as long as I am careful with what I eat, I do not have the sudden urge to go to the restroom and fear I won't make it. One thing this site has taught me is no two of us are alike. I was back at work 3 weeks after my final surgery. I wasn't moving fast but everyone was understanding. I have always found my students behaved the best when they knew I was recovering. I was fortunate enough to go home 4 days after the first surgery. It was at Christmas so my husband took a week off after I was released from the hospital. Once he went back to work I was on my own and it was fine. Sort of the same thing with the next two surgeries. I have always exercised and I think that helped with the recovery time. I also know from reading this site that I was not normal in the recovery time. It seems others have had a longer recovery. Coming off the high dosage of prednisone was the worst part for me.

Thanks for the comments. Helpful. .I hope my recovery is as speedy as yours. ."Going slow ", once I return to work, as a science teacher, not an option. I would need to be able to hit the ground running. You mentioned surgery no. 3 &4 . My procedure will only be in 2 steps. Could it be that because your procedure was done in 4 steps instead of 2 that recovery was faster each time? Thanks again for yor story.

My J Pouch is now a year old and the rectal burning is getting worse. I am experiencing the external pain as a result of going 10 times a day and wiping. However, it is the on going internal excruciating rectal pain that is making me crazy.On numorous occations I am up all night because the burning is so intense. When I say all night I mean all night and watch the sun com up. Pain meds sleeping pills, name and it and I have tried them. My problem is I have not come accross anyone with this much intense rectal pain. With that in mind my doctor refuses to offer any assistance. There seems to be no relief in site. This no way to go through life. I can't take it much longer!

Dwight: Are you applying any type of ointment/moisture barrier cream to your rectal area??? I am 15 1/2 years of having my J Pouch, and I am an RN.. one of the things that is so crucial is GOOD skin care/protection. this means applying something like A&D oitment (in the baby section of Wal Mart of Target or KMart.. apply a thin layer after using the bathroom and every night before you go to bed.. or you can use Desitin... you will see a big difference in how your skin tissue feels.. but there isn't any oral medication (pain pills) that will help this.. it is a local irritation.. so you have got to apply some creams/ointment... I still have to apply creams every now & then-- on high output days that cause alot of burning... Good Luck!

Also invest in a detachable shower head so you can rinse the area when you take a shower, that helps a lot. You might want to check your diet if you are getting internal burning sensations, do you eat a lot of spicy stuff?

Suzie, thank you and yes I apply Calmoseptine, but I will try A&D. My pain is like a electrial shock that goes from just inside the rectum straight up towards the pouch. The pain is very bad after movements, but it continues while lying still. Pounding electrial jolts all night and day. Stop eating give me some temp relief
Thank you
Suzie
Will, I plan on investing in detachable shower head- Thank you

Dwight, this will make you laugh a little... 6 months after my surgery, I had stopped using all of the hospital pastes/creams they gave me (I had usd these on my own patients and always hated them!) but I started with my ever faithful A & D ointment.. RELIGIOUSLY... and when I went for the 6 month check up, my surgeon was examining me and yells "you have the most beautiful, perfect Anus.. what are you using??!!!" and I proudly yelled "A & D Ointment!" and she said "you have gorgeous anal tissue!!!! hahahahah I'm a real poster child! ha I do hope you feel better "down there" and soon.. do you try to "hold it" when you have to go... for as long as you can... this stretches your pouch... and keeps you from going as much.. and over time, you will have low output days... and your skin will get a break.. I know it hurts.... wishing you the best!

oh Dwight.. and another ointment.. BOUDEAU'S BUTT PASTE.. it has zinc in it.. and it is wonderful as well.. we actually used it in some excoriated tissue for some patients... again, the baby section or order on-line...

Dwight, I get the bad burning, too - sometimes so bad it can bring me to tears. It feels like acid on an open wound. I slather petroleum jelly all over the area and it helps, but it doesn't heal until the activity ends when I'm finally empty. At times, I also get shooting pains in my rectum and I don't know what causes that. I love, love, love sweets. Does anyone know if sugar creates more urgency or output?

Debbie sweets or alot of carbs usually cause more constipation like activity... but having had my procedure 15 1/2 years ago, I still have "adhesion pain" or scar tissue pain..... once the body has been cut on and especially to this extent, your never is the same... when I think of how I felt before my J-pouch, even with the high output days, excoriated/painful anal area, occassional leaking at night.. painful periods.... I still am thankful I can actually travel and not worry about Colon Ca now... oh.. and after about 8-10 years, keep a check your B12 levels... we lose the intrisic factor which is needed to absorb B12.. and anemia will start. but don't worry... a month B12 injection is all you need! at 11 years out I was feeling a little drained... thought it was from working nightshift/12 hour shifts and plus. most nurses ARE drained and tired all of the time! But I was anemic and b/c of low B12 levels... I am fine now.. it's just all part of being a UC history...

I've had my j-pouch for around four years now, and I can't say that I've ever modulated my diet as a result fo the surgery apart from in the first few weeks.

I love spicy food - no problem there.
Sure, mushrooms and sweetcorn pops out in chunks (like we all saw in our external colostomy pouches) but that doesn't really cause me problems.

If I'm on the beer, I'll make sure I take four loperamide (acgtive content of brands like immodium) capsules to thicken things up and ward off night time issues.

And I have no trouble farting - my wife will sadly testify to that. :)

I guess it's all very personal what effects you experience.

My one problem is iron - I can't seem to absorb enough even with supplements so suffer form pernicious anaemia. Add to that the fact that I have to 'go' in the middle of the night and I'm always tired.

Meh - it's better than being dead due to a perforated colon... :)

Laura:
I only had three surgeries. Due to the high dosage of prednisone I had been on my doctor would not do it in two. My doctor also felt it was because I exercise so much that my time in the hospital was quicker than expected. I was up the day after surgery walking the halls (several times a day). I also would sit in a chair and tried to not lay in the bed too much during the day. It hurt to get up and down, but I was able to show my doctor I would be just fine at home. Once I was home I made sure I got up and walked around every hour or so. I am sure attitude helped. I was not going to let this keep me from my husband and children. I was tired of hearing my children ask if I felt good enough to do something with them.

Debbie: I have found that chocolate is my sweet, sweet enemy! I too enjoy my sweets and so for me I usually consume knowing how it's going to "treat me later", and I am referring to the output aspect. I would also like to know how others deal with this as I have had to give up so much over the years due to the surgery. This is one area that I like to treat myself to every now & then.

I have my pouch for 5 years... I go the bathroom over 12 times in a 24hr period. Having too much gas when going to the bathroom. Just recently I have pain just below my stomach when going to the bathroom, this is new.. any one else having this problem.

I had UC for ten years. What a hell it was. The two part surgery i had with the colostomy bag inbetween surgeries was just as bad and made me wonder if i was just doomed to a life of pain. Well its been 5 years now with the J-pouch and it was the best decision of my life. For me its been great. I do go 5 times or so and 10 times on a bad day, but 20 or more of the crampy bloody painfull times with uc that hurt so bad i would just cry are a thing of the past. I used desitin at first for the iritation and it worked great but Using baby wipes and really make sure that the stomach acidy poo is gone after going has made for little problems. If i eat a lot I go alot. Spicy going in spicy going out. Lots of sugar equals gas. I had to train myself to pass gas and now I can easily lying down. Just have to get past that feeling that im going to poo myself its helped. I just focused on only letting gas out and closing off when poo wanted to come. it took some time but it was so worth it. The frequency of bms has gone down because in the beging most of the bms were because of gas. So trainging myself to pass gas has been the most important thing for me because the less you have to go the better for the irritation. I only used desitin for a couple years. It feels like a process that my body is adapint to and after 5 years im better than I was at 3 and so on. Im going to try some of the remedies here to see if it can get better for me, but if your like me and can remember how it was with uc, ill get up at night a couple of times to go no problem. I know if i eat early enough for it to go through my system before bed im ok but a huge late dinner = up all night on the toilet. I know that I will have to go shorly after eating also. I have really enjoyed reading all of these posts and am very glad for this site and look foreward to reading more

just checked out vsl3 website sort of pricy for me. Is the pill form as effective? will it be absorbed when it goes right through me? and can I take one and get benefit from it?

The vsl3 is pricey, gauging where you are though it may not be worth it for you. If you are trying to get up to par sure it will help; of course the most helpful thing though is the correct diet/eating times.

Came across this research today:
http://somvweb.som.umaryland.edu/absolutenm/templates/?a=1445&z=5
It says the compound 'zonulin' plays a role in causing gut permeability which leads to triggering autoimmune diseases (colitis).

Will, thanks for putting all this up! I know everyone is different - when I had my ileosotomy a lot of the things people would suggest just did not apply to me! - but it is interesting and informative reading other experiences. I've only had my J-Pouch for a five weeks now so it's VERY early days, but I'm already liking the physical freedom it gives me. I've been practising Kung Fu and Kickboxing for years, so to be able to (eventually, once I heal a bit more!) twist and bend at the waist again is wonderful. Quick question, Will. I see from one of your posts that you started learning gymnastics. That's great! I was wondering when gymnastic stuff like handstands, tumbling, inversion, etc. is safe to do for people with a J-Pouch (how long after surgery)? I have a silly paranoia that my pouch will tear and flap around inside me when I get back to forms that involve tumbling! Obviously, I wont be trying anything for a few months so that I heal properly, and as always when talking J-Pouches 'your mileage may vary' - all the same, I'd be interested to hear your thoughts. Thank you - keep moving forwards!

Great question Neil. I can say for me, I had my surgery in Feb 2005 and started gymnastics in 2007, but I'm sure I could have done it sooner. I was working out with weights 6 months after the jpouch surgery (3 months after ileostomy takedown). I would say give it maybe 4 months post-ileostomy takedown depending on your situation before trying gymnastics; youll have to build up your strength via traditional means to get back to the point of doing gymnastics anyway.

hi there, this message is for John as I see you say that you are a personal trainer in the RAF? Its just that I tried to apply for nursing in the RAF but they turned me down as I have ulcerative colitis. I was wondering then if I got the surgery and the pouch put in do you think they would then class that as wavered because thats seen as the only 'cure' for ulcerative colitis? x

Hi Will

I am sanjeev from India my first surgery done on 7th april 2011. I am having acute diarrhea from the day one. Having IMODIUM , CODINE Tab, VSL 3 thrice daily but no use. Pls advise how to control this loosing weight everyday.

Sanjeev Kandhari
sanjeev_kandhari@yahoo.com

Sanjeev,
I'd get off the Vsl#...its very powerfull stuff. wait a little while before using probiotics. 6 months minimum.
also, acute diarrhea is a off for this long...shouldnt be that bad. see your doctor.

It can take a while for the diarrhea to calm down after the surgery depending on your condition when you had it. A month is a long time to still be losing weight after the surgery though, you should definitely check in with your doctor. There are many different things that could be causing it.

I had my jpouch 2years ago today and until my doctor put me on paragoric (2tsp. 3 times a day), oxycodone (15mg. 4 times a day) and oxycotin (10mg. every 12 hours) I thought I would rather die than go on. I started out going to the bathroom every 10 to 15 minutes only 2 days after my final surgery. My doctor tried everything to control the diarrhea, pain and bleeding but nothing seemed to work. I couldn't leave the house without stopping everywhere that had a bathroom, I was so tired from not sleeping more than a few minutes at a time and the pain felt worse than labor. I suffered for 20 months with no relief and tried everything I seen on the internet and nothing seemed to help. Finally I was sent to another surgion who recommened the meds I listed above and a sleeping pill and OMG what a difference that made. I now only go 3 to 4 times a day and sometimes at night (not that often now). I get pain here and there but nothing like it was. I enjoy doing everything I did before but still I wish there was another way to deal with it so I didn't have to rely on all those meds.

That is a lot of opiates, though of course opiates are known to relieve diarrhea. Are you able to function normally on that many opiates or is it impeding your activities at all?

Dwight, for the rectal pain my doctor gave me a script for lidocaine ointment (5% ointment not the jelly) it does burn a little when you first apply it but it numbs the pain in just a couple minutes and last quite a while. (I couldn't sleep without it the pain was as bad as you said) I still use baby wipes and switch from the lidocaine ointment and the calmoseptine and I always make sure the skin is cleaned well after each visit to the bathroom.

It has made the condition better to handle but I hate they way it makes my head feel. I would love for them to find something that works and that wont make me feel like my heads in the clouds so I could spend more time with my son doing things he enjoys. The meds stop most of the problems but it also limits the activities I can do.

I have read so many of your comments and there seems a lot of people here are struggling with the j pouch as i did for 5 years , I went back to an iliostomy now have my stoma back again and im not on any med im healthy and happy at last and have gained weight and looking great ....my advice DONT struggle get yourself a quality of LIFE .and if anyone needs my advice you can contact me anytime . This is my second time around with a stoma and i dont have any regrets .

I can't go back to the bag because I had severe allergic reactions to every bag the ostomy nurse could find. My skin constantly bled and broke out with a awful and painful rash. We tried every skin barrier made and nothing would help. I had the first part of the surgery on 2/16/09 and the second part on 5/13/09. I have tried so many meds to help control the pain and constant going and the only thing that has worked so far is the combo of drugs I listed above. The only problem now is the way they make me feel in my head. I have no idea what the long terms effects from the meds will be but for now I don't see any other way to deal with it. I don't understand what the pain was like for most of you before surgery because I had mine done for gardners syndrome (another form of FAP) and there was no pain before.

Sherry, I heard some people talking about Opana, you may want to discuss that as an option with your doctor.

I had my large bowel removed and ileostomy since 2004. Until this year couldn't make myself to go for another operation: j-pouch or permanent ileostomy? My doctor refused to do j-pouch operation in the last 2 years, never gave explanation why. Is it because my muscles weaker after 6 years or too many people have problems with a j-pouch I don't know. Finally end of march I had my rectum and anus removed - it's called 'preservation of ileostomy'. Ostomy nurse said I made the right decision because too many people have j-pouch problems. Now I am planning an overseas trip - do I have pre-existing condition for insurance? If yes what it is called?

You wont have any problems getting insurance as your disease was cured by your surgery you dont have a medical condition normal insurance is ok .I have been on holiday with my ilestomy many times and never took any special insurance i confirmed all this with my surgeon , may i also say you did make the right choice as i was a victim of the j pouch for 5 yrs it was torture i also had stoma for 3 yrs before that and i regret having the reversal but i am back to a stoma and am feeling great the only problem is i had a complicated surgery which caused a hole puncture in the boweland now i have a fistula that will probably req more surgery all a result of making a bad decision in 2005 as i was doing well with the ileostomy , but i cant look back i suspose i need to look forward and hope i get this fistula sorted with no complications so i can live a decent quality of life now .

Thanks, Pam. I hope your problems will go away and you will enjoy a healthy life. My doctor said I have a pre-existing condition because I have an ileostomy. I am worried that if I have a bowel blokage or something else and I am in a hospital while I am away it won't be covered by insurance.

Zina you have not mentioned why you had your large bowel removed if it was due to colitis then you dont have a pre existing condition it was repaired but if it was chrons then its still a condition ...i understand what you mean by a blockage but anyone can have that even people who dont have a stoma anyone who has had abdominal surgery at all can have a blockage !! anyway i do realise your concerns perhaps asking someone whi is an expert on travel insurance would be best to ask or your surgeons secretary may beable to help ...

I appreciate your answer, Pam. I had colitis

I just discovered your site and have read all the entries in one setting! My husband is 26 and has had a J pouch since he was 13. His UC has been pretty much under control after the first 2 years of emergency surgeries, obstructions, kinks, finding out he was allergic to most pain meds, but starting last summer he has had several bouts of pouchitis that lingered after antibiotics (cipro and flagyl) and several of what seem to be partial blockages. His diet and routine haven't changed, I'm wondering if he could have some scar tissue in the pouch that's causing the blockages. He has been having blood in his stool more recently in the last year too (bright red so we're not too worried). Since he has had the J-pouch since he was so young, I think he's been able to adapt to it better than those who got it later in life, but I would love any suggestions to help with the blockages.

Have you tried having the jpouch scoped? Bright red blood means it's not Chrons but the jpouch shouldn't be bleeding either, especially after having it that long. I would have it scoped to see what's going on in there.

My boyfriend seems to be stuggling with his j-pouch. he had his colon removed in Feb/09. I won't go into all the details of his first surgery to his last, but he has been in and out of the hospital a ton of times since then with complications and pain. he seemed to have pouchitis at one point and was on cipro and flagyl. he is in the hospital now. he went in a week ago with terrible stomach pain. he had a scan done and was told he has a bad stomach ulcer. the stomach pain seems to be a bit more tolerable now for some reason, but what seems to be most painful is when he goes to the bathroom. he is usually screaming in pain and has to take a few baths a day to soothe things. he had a scope done 2 days ago and they saw some inflammation, but said he doesn't have pouchitis. i thought pouchitis is an inflammation of the pouch. anyway, he said the pain going to the bathroom is unbearable and exhausting. he said it feels like acid is coming out of him. he said it's not butt burn, its more internal. he does use ilex ointment and calmoseptine, but it hasn't helped. he also uses an enema bottle to cleanse so that the area gets rid of any irritation. the hospital has him on painkillers (dilaudid and methodone i believe), but this is only masking the pain and not fixing the problem. i dont think they can figure out where his pain is coming from and what could be the problem. i go online often trying to be his own advocate and researching symptoms and possibilities. i read something about fissures tonight and i thought maybe that's what he could have. but when they did the scope the other day they didn't mention that as a possibility so i don't know. they also sent his stool to be tested but no results yet. he is at the end of his rope. he talks about going back to the bag as the only possible way for some relief from this pain because he can't function. i have readh many of the posts on her tonight, but i was wondering if any of you are familiar with this pain in the rectum area and the acidity that he is experiencing. he did try that stuff called cholestyramine that is supposed to help with the bile acids, but he didn't think it helped him. i dont know whether his dr. has just not had a patient that has experienced by bf's complications and pain or if he really doesnt' know how to help, but any insight any of you can provide would be much appreciated. i feel like we have to be our own doctors to try and get to the bottom of things. thanks and have a nice night. :)

I am sure that more people will comment on this MB-
This is an area that I struggle with as well. I have narrowed it down to my diet! I have all of the symptoms that you have described above when I eat spicy food, greasy, raw vegetables & fruit, and also nuts. I believe that there are common things for everyone, like spicy foods but the rest I would say if "trial an error" and he would need to determine what specific foods cause this response. I am no doctor either but I pay close attention to what my body is telling me. This is also a wonderful site and Will has great notes on the "good" & "bad" foods-check it out.... I have had my pouch for going on 5 years now and I still have issues from time to time, especially when I go out to eat or eat what someone else has prepared. I wish you well and hope that I may have been of some help. God Bless

Yea the diet is the first thing to check. Sounds like the doctors may be at the end of their rope too trying to figure out what it is. Ultimately though the doctors don't have to go home at the end of the day and live with it though so there will always be a level of detachment. That is why we all must take our health into our own hands and never take things at face value without doing our own digging because we are the ones that have to live with it.
Have you considered that his stomach might just be very acidic? That tends to happen when you get stomach ulcers and that extra acid goes all the way down through the GI tract. You may want to do some research on restoring ph balance to the GI tract, reducing stomach acidity and what foods are more alkaline: http://www.rense.com/1.mpicons/acidalka.htm of course you should cross this with what foods the jpouch can tolerate.

Good luck

This site is awesome! I wrote in a couple months ago...so here is the update. I am finally back on treatment and found a great GI doctor so things are looking up. I am worried about my weight I was 180lbs in Jan this year but now i am down to 125lbs. It seems that all my muscle is gone or it turned into jello. I am able to eat a little bit more then usuall but until i can get me calorie load down I can do much moving around. I am drinking my protien shakes and hope to be able to eat full meals soon. The doctor put me back on Humera and immuran(wich is given to liver transplant paitents) to suppress my immune system again. I just took my 2nd round of shots last night. Last year when i was on the Humera for 3 months, I broke out with severe psorisis. It was so bad on the bottom of my feet i could barly walk at times because of the blisters and deep cracks. Well it did clear up about 95% but now with being back on the Humera I am especting the psorisis to be just as bad. I pray that it doesnt get a sever as it was. I also am applying for disability. Can you believe that I have been denied twice. I have a lawyer now and she said she is definitly going to be able to get it approved. There is just no way i can work right now until my body calms down. I have found meditation to be helpful and I am still smoking pot...If my mom ever knew...lol. I feel bad for taking illegal drugs but I dont know what i would do without it. The way it relax my brain and makes my tummy feel a little better is the bomb. I wish they would make it okay for medical use here in Texas but I do not see that happening any time soon.

Yea I was also denied for disability when I had severe ulcerative colitis; they have a list of diseases which qualify and if your disease is not on the list you don't get it. It's a really messed up system but your lawyer should be able to help you out there. Let us know if that ends up working out, I'm very curious!
I'm a firm believer that marijuana should be legalized nationally for medical use but sadly there are many political barriers to it.

Shannon-
He has avoided spicy food (used to love indian, but hasn't had it in years). doesn't eat greasy food. a few fries here and there so maybe he can't even had one. and he doesnt' eat veggies, fruits or nuts so those can't be the culprits. he doesn't eat much anymore. chicken maybe and some rice or potatoes and maybe some rick krispies or corn flakes and a banana or some yogurt. he has even recently tried staying away from bread thinking maybe it was a gluten intolerance and he also drinks lactose free milk in case he's lactose intolerant. it's quite troublesome, but hopefully he will find some relief soon.
Will-
Thanks for your suggestions. Stomach acidity considering he's been diagnozed with an ulcer now is probably what the issue is. You would think other than nexium there would be something that the hospital would suggest. he needs to see a GI doc i think since the internists and the colo-rectal surgeon do seem detached at this point. i had looked at acidid and alkaline food lists awhile ago when he was first experiencing the acid problem. the lists surprised me because i found some things on each that i thought would be on the other. i will definitely do some more digging on this. he's trying the questran to see if that will help with the bile acid in his system. tastes gross he says, but sometimes you have no choice. i think he should try some fiber (metamucil, etc) to see if that would help also. again, tastes gross, but there has to be something that is going to do the trick and help him gain some relief and normality. thanks for your insight and help. will let you know what happens.

Will-
I am just looking at the link you posted for the acid/alkalilne food list. as i said i guess he will need to see a GI dr. who may be able to help him and check his PH level, but I noticed on the alkaline list that there is no animal protein, meaning not meat or fish. crazy! he's not a big meat eater, but does like turkey or chicken and an occasional sausage or hamburger. i am guessing that these things could be throwing off his system and affecting his PH balance in a big way. but geez. what does one do to maintain their weight and get some protein...not too many proteins on the alkaline list other than nuts which j-pouchers can't tolerate or whey protein powder. he used to use that when he exercised so i will tell him to bulk up on that and see if it helps. i will review this list more again and show it to him and see what happens. thanks. :)

5 years ago my daughter aged 23, was critically ill with acute ulcerative colitis. She had gone from a healthy weight down to less than 6 stones in a matter of months. She had to have life saving surgery which resulted in her having to wear a bag. The surgeon was amazing and through his expertise she survived. He also took into account that she was a beautiful young girl and made sure the bag was positioned such,so to enable her to continue to wear modern stylish clothes etc.
One of the key things which helped her through all of this was her attitude towards it. She told herself that the bag was her friend (even giving it a name) and kept reminding herself that without this, she wouldn't be here today. She has a very warm, loving and bubbly personality which helped her through the initial hardship of getting used to an external bag. Approximately a year later she had more surgery to create a jpouch, and about 9 months later had the reversal operation to remove the external bag. Thankfully throughout all of this she has been extremely lucky and healthy with little side effects or problems. Today you would never know she had been so ill, and is the picture of health, and like many others, knows what her system can tolerate and what she has to avoid. She has trained herself to be able to sleep most nights without having to get up to the loo, and the same applies during the day when she knows she is going to be busy. She is on no medication at all, so life is very good. She will be getting married soon, and she would dearly love to have children so my question is, has anyone with a j pouch given birth? Is it possible? What problems are known about this? After being been so healthy and trouble free, I worry that this position will change. The surgeon has said that the hardest bit will be conceiving after major abdominal surgery, but once pregnant, there is no reason for her not to go to full term. While we believe this, I have have looked on many forums etc but not heard of anyone who has had a child after this surgery.

I don't really know anything about the relation of giving birth and jpouch but theoretically if the jpouch has all healed up I don't see there being any interactions. Definitely ask an expert though on this one.

Christine - I googled "Pregnancy after J Pouch" and found several entries. Here are quotes from different sources: “Both men and women who have had an ileoanal reservoir procedure and have a J-pouch have become parents. Most of the women have caesarian sections but there are women who have had vaginal births after this operation. Thirteen percent of women in our surgery have carried a pregnancy to term.” ~ UCSF Medical Center
“Some studies suggest that fertility may be decreased after an ileoanal pouch procedure, but this by no means suggests that women who have undergone this procedure can’t have children. Indeed, many woman of child-bearing age have spontaneously conceived and given birth successfully after this procedure. It is possible that pelvic scarring may be the cause of this decreased fertility, and therefore the current laparoscopic techniques used at NewYork-Presbyterian Hospital are attractive in that they reduce the amount of internal scarring.” ~ New York Presbyterian Hospital

Christine - more quotes: “In 1997 at the age of 39 I fell pregnant (after years of infertility) and the growing abdomen and uterus caused the valve to lose its pathway into the pouch. Following the birth I had corrective surgery but it was unsuccessful due to the abdominal muscles thinning out and a prolapsed stoma/valve. The only option was to transfer the pouch to the left side and re-construct a new valve. Four months later I am doing very well, and am relieved that I am able to continue without having an external bag. If my sphincter valve had been salvaged twenty years ago I could have been able to be re-connected i.e. a j-pouch.” ~ The J-Pouch Group
“On the baby front, I did need to do IVF to get pregnant, but it worked first try. The effect on my ileo was non-existant, except that I normally use convex wafers and as my belly grew I switched to flat ones. Back to convex after delivery. I did have a major bowel obstruction that lasted 5-6 weeks in my fifth month. I was on a liquid diet and in the hospital about 15 days. However, they were able to catheterize the ileo and hold the obstruction open to get me through. Dr Peter Mowschenson (surgeon) at the Beth Israel in Boston took care of me during my pregnancy (Lahey doesn’t do obstetrics so Dr Roberts couldn’t care for me). Before and after that a very normal pregnancy. I delivered by c-section after a consult with my high risk OB. He was willing to let me try a natural delivery but told me that with a planned c-section, he could plan and take precautions to work around and protect my GI system. IF I tried a natural delivery and needed an emergency c-section, he wouldn’t have time to do that. Since my Mom needed 3 c-sections without surgical issues, I decided to go with the planned c-section. I delivered a 7lb 10oz baby at 37 1/2 weeks. He was delivered early intentionally so that I wouldn’t go into labor. He was perfectly healthy and still is.” ~ The J-Pouch Group

I had my j-pouch on the 11May 2011. I go to the washroom 4 times daily, sleep through the night. I just start to have hives all day and night. The doctor gave medication for this, but the pills are very hard on my stomach. Is anyone having hives? I move to Germany a year so I have no support group.

This is an excellent site, so well done. Keep up the brilliant work. I had pouch surgery last June, and although not having to use the loo half as much as I did when I had UC AND when I had an ileostomy (!), I am just finding myself so very, very tired all the time. My diet is good, as I am diabetic as well, but can't work out why I am so knackered constantly. Having my ileostomy removed has been one of the best things I have done, and I only wish I'd had my pouch done much earlier. The tiredness 'though is killing me. Anyone have any ideas?

Anaemia from poor iron absorption and lack of sleep through having to get up in the middle of the night are the usual reasons....

Andrea, getting a rash/hives could be a reaction to some medication if you are taking any like opioids for pain. Are the hives localized in any particular area or all over?

I have them all over, and I am not on any medication. The doctors are saying they should be gone in six weeks.

I am doing pretty bad today. Spent the last two days on the toilet. I cant drink enough to comensate and i definitly cant eat much. I had a half turkey sandwich this morning and made sure i drank some water. I am very weak and i have no energy. I have been on Humera for about 2 months. I am sceduled for a shot today which i give to myself. I placed a call into my doc's nurse to see what she suggest. I am contemplating going to the hospital. I cant afford another outragous bill. If thats what my doctor suggest then of course i will go. any suggestions...down in the dumps today, Juli.

Juli, were you able to get on disability? I think that is very important to get your lawyer on asap; with chrons and colitis you need to have some sort of way to pay for the medical stuff for situations like this. I'm not sure what to suggest, I'm not experienced with Chrons' interactions with jpouch. At the very least, try to stay calm and maintain a positive outlook.

My lawyer is still waiting to hear back from SS. She feels confident she will be able to get my case approved. She said she has gotten SSI for another young crohns sufferer. I am not counting my chickens before they hatch LOL. I hope to know something in the next 4 weeks. I will keep yall updated on that. Thanks Will!

Is it true that you cannot take time released medicines after you have had your entire colon removed? thank you.

I was unemployed for about 3 months and just started my new job about 7 weeks ago... I am not sure if I am doing something wrong, causing myself issues or if it's my nerves or what but I have been miserable for the last 6 weeks or so. I use the restroom more frequent now no matter what I eat or don't eat and the facility that I am forced to use is in some what of a public place. I am not sure if I am not emptying completely or if something is wrong with my pouch. I called the doctor and he scheduled me for a scope to look at my pouch but that is not until Aug 22 and I am not sure how much more I can take of this. To give you an idea I am bloated, gassy, cramping and I am going to the restroom like every half hour during the day. Although it seems better once I get home I am still not "normal" and just don't feel myself. Have any of you experienced this before? Any suggestions would be wonderful.

first things I would check is diet and level of physical activity you have at your job. Stress/nervousness may also play a role.

Also have you gotten checked out for pouchitis?

Shannon - I have had this problem ever since my surgery in 1990. In order to do my job (or go anywhere)during the day, I am only able to eat doughy things (bagel, french toast, waffle, etc.). If I eat anything substantial, I can't get off the toilet. I eat a healthy dinner to make up for the poor diet during the day. I was recently checked out and was told that surgery could possibly fix a weird angulation that I have. I refused the surgery because it comes with the risk of needing a permanent bag - not willing to take that risk. I periodically take rounds of Cipro and Flagyl and that helps briefly.

Will-I guess one of the things that they are going to look for is pouchitis when they do my scope next month. I have reviewed my diet and that is what's so frustrating because this is the first time that I have had these issues since recovering from my surgery. I have found myself living on imodium AD to control my restroom trips...
Debbie-I sure hope that I don't have to live the rest of my life like this. I think that I may have taken for granted how "good" I have had it for the last 4 years! I will let you know what the doctor finds out/says. Thanks for your thoughts.

Hey everyone, just wanted to share that I discovered the 'Revive' Vitamin Water has 100% B vitamins and 25% potassium in one bottle, all things we're deficient in with the jpouch. I've added it to the good foods list.

hiya. I am just wondering were would i get that `Revive` vitamin water i would really like to try it what part of the world are u from?? I am from Ireland i have never saw it here. I have had my jpouch with 15 month`s and had pouchitis 2weeks after the op for 1 year, and am always on the look out for good thing`s for my body.

I think it's only available in the USA unfortunately. Maybe there is a similar product there?

oh ok thank u very much.

IF I'M LOOKING AT THE CORRECT PRODUCT, THAT YOU MENTIONED WILL, YOU CAN BUY "REVIVE" WATER/JUICE ON LINE. THEY HAVE A WEB SITE AND AMAZON.COM ALSO SELLS THIS PRODUCT. MIGHT HAVE TO CHECK IF THEY SHIP OVERSEAS. IT IS WORTH A TRY.

Yea you are right, Amazon does have it! http://www.amazon.com/Vitamin-Water-revive-20oz-Pack-6/dp/B0006LXXHA/ref=sr_1_1?ie=UTF8&qid=1310774075&sr=8-1

Hi - can you please unsubscribe me. thank you.

I have had my J-pouch for almost 16 years. October 1995 was my surgery date. 4 years ago I went for a routine check up at my GYNECOLOGISTS. My hemoglobin was 11.4 and she was very concerned; I had every excuse why I was 'tired'.. I was working 12 hour night shifts, etc.. but I checked my hemoglobin from a year prior and it was 15.6.. SO.. I called my colo-rectal surgeon & she told me I needed B12 injections b/c of the terminal ileum involvement with the pouch, we lose the ability to ABSORB B12.. so no matter how many oral supplements we take (after a few years post-op) we won't absorb and we will become anemic. at that time I was almost 11 years post op and my surgeon even said "you've actually gone longer than most- usually it's 8 years we see this happen". SO.. My B12 level was underground on serum lab test.. SO... after a few months of the monthly injection, I FINALLY started feeling normal again. So keep an eye on that after a few years post-op! I have been very fortunate with my pouch and am thankful everyday that I got my life back- and I was only 28 at the time...

Suzie-I find it very interesting about the Vit B12 because I have had a hard time for the last year 1/2 with fatigue and the doctors have run several sleep tests and found nothing. I am going to go get tested & hopefully this will be the answer i've been looking for-Thank you for posting

Shannon have them do an Anemia panel... it could be your iron and your B12... and of course a CBC (complete blood count)... when was the last time you had a CBC done? I hope they can find an answer for your fatigue.. I honestly didn't realize how bad I felt until I started feeling GOOD again!!! GOOD LUCK!

Hi, I was wondering if anyone has had any ongoing problems with fissures and if so what treatment you have had. I have been thinking about botox and was interested to know if anyone has had this done,considering the incontinence that may happen. I have had my j-pouch for approx 15 years and have probably had the fissure for quite some time but not to this extent where it will not heal. I am using Rectogesic but it only helps to a certain degree.

To those who want to unsubscribe from email notifications, please email me at webmaster@willperone.net

Well I ended up not going to the hosp after all. I made myself drink vitamin enhanced water to stay hydrated and i put myself on a white bread and white rice diet or low residue. I am taking a multi vitamin but my body is not absorbing it. I am getting sharp pains in my arms and legs...i think its a potassium issue. My lawyer is still waiting to hear back from SSI so no word on that yet.

Great website! Thank you for all the great information. I had my take-down surgery in April, 2004 and have had minimal problems with my J-pouch, although I do have pretty frequent bowel movements, still. Do you know of anything to help clean out my pouch? Thanks!

What is your normal stool composition?What do they consider semi-formed?

Great website Will, lots of tried and tested useful information. A year ago a very sudden, serious, out-of-the-blue bout of colitis - I had to have an emergency total colectomy for a perferated bowel. I've now joined the pouchie club! life is okay though, just struggling with the tiredness, but after the year i've had i guess that's to be expected!
..... couple of questions...
Are there any UC research projects we could all help with?
Are there any veggie/vegan pouchies out there that can offer any advice?
oh and hey will - what about a dating page for us sad singleton pouchies!!?? ;)

hi where are u from? i have my pouch with 18 months..

i'm in England, thank goodness for the national health service!
i read a useful tip earlier, good if you have to pay for your VSL#3
- you can use the powder sachets to make yoghurt, which makes it go much further. Luckily i don't have to pay for mine, i looked it up and couldn't believe how expensive that stuff is!

what part of the uk are u in? im from Ireland.. if u ant to chat more about the pouch im here to listen..

I had the j-pouch procedure at the Cleveland Clinic in January of 1996. Dr. James Church saved my life with this surgery. I suffered with ulcerative colitis for 10 years before being sent to Cleveland. It has changed my life in so many ways but I still deal with some issues. For example, pouchitis (usually a few days of Flagyl\Metronidazole helps), anal itching and burning can be very annoying but Clamoseptine ointment does seem to help, output frequency can be slowed down by taking Pepto-bismol daily. Even with some of these issues, I am so glad I had it done.

I had Colitis for over 25 years. In the last five of those years maybe only 2/3 periods when the colitis was active. 9 years ago I was diagnosed with with cancer, just a small tumor on the sigmoid colon
My first operation went very well. Re-connection to the pouch was over a year later due to problems at the Hospital. I had a fantastic first six years then during the winter of 2009 I found I was visiting the toilet much more. feeling slightly bloated, as time moved on by the spring of 2010 it was obvious there were real problems mainly with the urge function I could feel the motion moving into the pouch then get a massive urge to get rid of it, only to find that I had past a very small amount. this problem increased to about twelve times a day. Then shortly after eating I could feel the gut peristolsis, having to go to the toilet maybe four times in the hour after eating.
I was diagnosed with pochitis and given Cipro...Within three days much better 10 days and Antibiotic diarrhoea so had to stop the tablets. I have never passed Blood during pouchitis and feel it is more to do with my immune system attacking the friendly bacteria living in the pouch creating inflamation this makes the pouch puffy thus reducing it's size, so pouch is inflamed and sensitive with reduced capacity. this is what caused my collitis. I am concidering asking if I can try Sulfasalazine to more gently reduce the bacterial count. some thing has to happen as presently I am in a worse place than ever I had with my colitis,
Kind Regards...Graham

October 3rd... I wil celebrate 16 years with my pouch... I have high output days (drink alot on those days!) and apply A & D ointment if I have irritation/burning down there... very painful periods (from scar tissue around that area... take ibuprofen for that... but still enjoy hiking.. working full time.. walking my dogs.. travel anywhere in the world want to go... I even had a bowel obstruction several years ago that woke me in the middle of the night- very painful & lots of vomiting... Graham did they remove our rectal tissue as well?? A friend of mine had the pouch done... BUT the rectal tissues wasn't removed & within 6 months she as SO sick.. it was like colitis all over again... they took her back to surgery.. removed the rectal tissue and she is healthy again! WHY they left it there I still cannot understand... I am an RN as well asa "pouch girl"... Graham I hope things get better for you!

Hi.
Nice to here from you, yes the sore bottom can be SO bad. I have found that a small amount of ..do not laugh..Pile ointment, is excellent very soothing it is mainly Witch hazel so safe.
Yes they did remove the rectal tissue as the little tumor was on the sigmoid that's the bend prior to the rectum.
I really do not feel that the Pouch route after having the large intestine removed is not the Gold standard we are led to believe.
I must say that if the surgion had not made such a good job connecting to the Anus I would be in big trouble. I actually never leak but the discomfort and pain associated with gripping those muscles for long periods when away from home cannot be described,
I do not understand why we are given Ciproflaxin in the first place. the only indication I have is that my pouch is inflamed, No high temperature, No Puss, No blood, I have a feeling that if I was given a short course of Prednisone I would get the same result as taking the Cipro.... remove the bacteria slow the immune system stop inflamation. slow the immune system with pred and the same outcome.
I do have an over responsive immune system.that is what coused the Co;itis.
I have tried Pro biotics acidophalus, biphidus etc, I get worse!!
Will be seeing my Surgeon soon and will put my thoughts to him. anything new I will post here

As far as research projects, I know WellApps is using the information they collect in their GIMonitor app for medical research. As I come across studies I post them up on here or the other colitis pages. What I would like to see though is more research on alternative therapies, supplements and diet. I think there is a <b>lot</b> of positive benefit with tweaking around with those for jpouch and colitis sufferers. I have been in contact with the CEO of WellApps and proposed several features around alternative therapies.

Hi Will.
Yes I agree nothing like a little abstract thought, the problem is the experts rely on learned information they tend not to go outside normal knowledge. After working for BP for most of my life I am quite addept at identifying cause and effect scenarios. My surgeon has refused to allow me to even try Mesalazine instead of Ciproflaxin, her reason 'I do not have Colitis'???? obviously not a lateral thinker.In effect I am being told that mesalazine will be harmful if used to treat pouchitis, Has anybody tried it?
Graham

I had j pouch surgery 17 years ago, my only problem has been the number of BM usually 10-15 per day I'm ready to try anything any suggestions on where to start would be greatly appreciated

Marc I've had my pouch almost 16 years and I still have "high output" days and I have days of 10-12-15 stools... and honestly, I don't think it's going to change.. Number 1 is that we do not have a colon... our body was originally structured to function with a colon... and thank God for the research or a pouch.. at least we are ale to control our bathroom urges, when I had colitis I cannot tell you how many times I was embarrassed b/c I didn't reach the bathroom in time... or how many clothes I ruined! If a food is known to be gas & diarrhea causing (spicy foods, broccoli, etc.) for a "nonpouch' person, it is going to affect us pouch people even worse.... We are never going to be like everyone else...... b/c not everyone else has a pouch....

Hi Will.
Appart from my Pouchitis causing me to visit the toilet very often when it is not active I find that about seven times a day is normal depending on the rule that what goes in must come out, so large meals equals more output. I have tried missing lunch, I take 6 to 9 Lomatil tablets a day(DIPHENOXYLATE 2.5mg) two every six hours increasing and decreasing the time interval as neaded also a good back up with the Lomotil If I am travelling or away from home I take a 30mg dihydrocode tablet at the same time as the Lomotil.
I have managed seven hours between visits using this method of control. Note, I would not advise taking both tablets for extended periods as there are side effects if they are taken for more than a couple of days.
Graham.

Over all things have improved my new GP is fine. I followed my Cipro with 5 days of Metronidazol 400mg. I had a good response to the Metronidazol, The Doc asked for a stool sample to check just what flora is still alive up there. He thinks maybe there has been Pilory bacta or some other bacteria that lodges in the membrain. it sounds like an action plan to me!!!
Graham

over the past year in/out of hospital, i've met 4 other people who've had the same operation, ALL of them, like myself are veggies - is this just a coincidence?

You mean they all had the jpouch operation? Were they vegetarian before, after or both?

I had ulcerative colitis and had the j pouch surgery about 8 years ago. I have never tried Lomotil however my doctor recently mentioned it. I usually go 4/5 times a day without it. My mom told me not to take it in the case of a bowel obstruction or my muscle that I have left not working, however the doctor did not mention any of this. Has anyone here had problems with taking Lomotil?

Krytsen.
I feel that 4/5 times a day is very good but possibly just 2 lomotil tablets 3 three times a day would help with that horrible period where one has to really fight the peristolsis usually just after eating. maybe it would also help to sleep through.
You are I think quite lucky in maybe having a pouch with good capacity
Graham

I understand that Lomotil is an ant-spasmodic drug it slows down the perostolsis in the small intestine. As long as you are not trying to realise a state of normality all should be Fine ...Just remember you have a pouch not a Bowel. so getting back to 1 or 2 times a day is not an option, unless you do not eat.
I tried reducing my food intake only to find my output was became acidic this inflamed the pouch and my bottom. it is all a balancing act. I feel that having excellent muscle tone in the pelvic floor it most important and can help avoid embarrassing problems.
Graham

Just very grateful for this website, thank you everyone for sharing

hi will - re veggies as above 2011/08/25
the 4 people i've met who've had j-pouch surgery have all been veggies before the op. i've been veggie for 20 years, my illness was very sudden and severe - between onset and total colectomy was about 6 weeks (no previous symptoms) is it a coincidence do you think? or is it possible to eat TOO MUCH fibre? or perhaps certain veggie products are an irritant? in the uk there is a popular veggie product range called "Quorn" which i've found out is banned in some couuntries!! i'm going to investigate that one further.

There have been numerous studies linking UC being triggered by bacterial infections, that is why antibiotics are often part of the medications prescribed. Vegetables are much more likely to transmit bacteria in restaurants because it is not cooked; it can be cross contaminated from nearby raw meat which then has the bacteria in it destroyed by cooking.

Had the taken down 6 weeks ago things went pretty well, now all of a sudden i have blood from the sides of my rectum, alot of stinging, and seem to always have the urge to go but with very little stool, feel like i need to strain to get some out, along with this comes the gas any ideas that might help?

Greg.... you are considered still post-op.... the little bits of blood you are seeing are normal right now.. at least it was for me... adn the stinging is from frequent stooling... .your pouch is still getting used to being used... the next several months are going to be recovery time... when you feel the urge to "go"... try to hold it as long as you can.. this will stretch your pouch and help strengthen your anal/pelvic floor muscles.... but most of all, you need to talk to your doctor.. I am a "pouch girl" of 16 years, come october 3rd... I had the ostomy for 7 weeks.. and the initial phase after reversal is when your pouch is getting used to things... be careful with your diet... you are always going to have alot of gas... at least that's the case with me.. GAS-X, my friend... drnk plenty or water/fluids right now... and apply A & D ointment (in walmart, drug stores in the baby section!) down there aftr each stool and at night before you go to bed... don't eat close to bed time, either.. I'm also a nurse of 21 years...and I also worked directly with UC patients post-op from pouch sugery.. at The University of NorthCarolina at Chapel Hill, NC... always stay in close contact with your physician.. and remember... not everyone's situation is the same..... listen to your body... and "train" your pouch! I stil have "high output" days and on days output is "high".. my intake is HIGH.. fluids, fluids, fluids... GOOD LUCK!

Greg
There is a possibility it is pouchitis. the frequent urge to go is caused by the pouch tissue swelling when inflamed, it reduces the capacity of the Pouch. It can be a visious circle the more you go to the toilet the less residence time your food has so the output is more acidic it is so a sore bottom is quite likely.
if the pouch is inflamed, well its like putting vinager on a cut....ouch.
Are you taking drugs to slow down your gut?
As has been commented previously. You have to teach the pouch who is boss.
It will possibly take a year for things to finally settle down
If the Blood you are passing is fresh bright and runny it needs investigating, any sign of puss and it is urgent.

Hope you feel better soon....Graham

Graham, thanks so much for the great info. I did get a prescription today for pouchitis will see how the next 10 days go. Did start today with the a WHEY 100% mix, took the advice to add bananas was really good. feel much better today spent most of the last 2 nights trying to hold and strengthen my butt muscles. read alot of the postings above and have really helped. have gone to store and bought Calmoseptine and the A&D Ointment seems to be working. On a strict schedule to take Loperamide every 4 hrs seems to slow things down Great!

Hi Greg, Here is hoping you are now improving. It will surprise you how quick the Antibiotics work, Metronidazole works best for me but it can have side effects, I get I find Lomotil to be better than Loperamide. I had a really bad period with low potassium.
typical signs are, fategue, Cramping or muscle spasm, feeling kind of floaty and light headed, possibly irregular heartbeat.
Graham

I am in my 18th month with my "new plumbing" and just found your site tonight.....THANK YOU!! I am very grateful for the surgery, for my J pouch - feel so much better, but am still getting to know what does and doesn't work. Very much appreciate this virtual support group....

Yet another Aussie ( J pouch 20yrs ). I have not looked back since my Doc prescribed Panadeine forte. I take 1 about every 4 hrs, more if something is not agreeing with me. No more sore bots. Much more control and less frequent movements. Also get B12 shots every 3 months. Thanks Wil.

Jude, very curious about Panadeine forte. this is the first i have heard of it. I have gone back to work this week. Now thinging i may have gone back to early i have cut back on the lopermide to just 1 every 6 hours tried the A&D cream as well as the calmoseptine ointment worked okay for awhile then developed some nasty sores just outside the butt. waiting to see my Doctor. now today they are starting to bleed. quit useing the creams as directions say to discontinue after 7 days would like to hear more about Panadeine forte
greg

Hey i am Nathan and i am from Bundaberg Australia and i just had a emergency j pouch formation and i am coping with it but i still havnt got a proper diet i had UC before the operation which struck me from outta nowhere and was rushed through the whole process but now that i have a J pouch i am finding that i am having acid like bowel motions i am however steering away from Weetbix (Australian) which is a cereal but coming up to my birthday which is on October 3rd and being my 18th i am wondering what alcohol is best to have that wont cause problems during the night that i have it is it good to have rum?? please can someone contact me on my email and give me some info please i am dieing to find out what i can do

Of course any alcohol is going to be bad for the jpouch but the ones that do the least damage in order (by volume) are:
1) hard alcohols straight up (vodka on the rocks, rum, etc)
2) wine
3) mixed drinks without soda in them (vodka cranberry)
5) mixed drinks with soda in them (rum & coke)
4) beer - avoid beer because it is not only alcohol but also very acidic and carbonated; it took me several years to be able to drink beer to any extent

Your body will get better at tolerating alcohol over time, it may take a few years.

Good luck and happy birthday,
- Will

Also stay away from drinks with sour mix (margaritas) and orange juice (screwdriver); those mixers are extremely acidic.

Nathan.
It is important that you eat the opposite of what is seen as a healthy diet with lots of fibre.
You are looking to slow down the transit of your food through what is left of your intestines. The longer your food intake spends inside you the better. Weetbix is course wholegrain, great for moving stuff along your large intestine, if you have one.
I have found cornflakes to be gentler. also for breakfast peanut butter or Jam on white bread toast along with any fruit that is not too acidic. Fruit peel is a good bulking agent so chopped pear or ripe apple with most other fruit mixed in with the cornflakes is good.
Note that All your fruit must be washed to avoid the potential for pochitis.
Information for anyone interested. I have been mon itoring my pouch since my last bout of pochitis. All was fine until I had a large helping of Parmazan cheese with an italian meal, within 3 days the pochitis was back, Cipro would not budge the problem. I then had a week of Metronidazole, this worked well and all has been fine, I had noticed previously that soft type cheese and smelly cheeses coused problems. I would advise sticking with Chedder type cheese.
On the Sore Bottom question, in our condition we tend to be constantly cleaning or washing that area. due to us passing partially digested food the potential for thrush type yeast infections is real clean warm water is more advisable unless there is a real need to clean up after a slight accident. too much washing removes the friendly bacteria that hold thrush at bay. I always have Dactakort
(miconazole)cream available just in case, it is so good that two applications will stop thrush dead, it will also prove if is thrush.
Kind Regards....Graham.

Jude
Not really sure Nathan how the panadeine forte works. I'm guessing it's anti spasmodic as it's most common side effect in mormally plumbed people is constipation. It is only available thru prescription( in Aus) so talk to your Doc.
As for brekkie I never start the day without Porridge (rolled Oats).It's very calming on the tummy. I have been known to have a bowl anytime my stomach is feeling off.

Thank you Will and Graham and Jude for those extremly good infomation also i was wodering i am taking a medication that slows the bowle from diarrhoea well i got to actruelly there called Imodium and Gastrostop it says to take 2 twice a day and one every hour now ever since 2 days ago my small bowle is going crazy with painful rumbling and plus with the mixture of the going to the toilet its abit painful and suggestions how to stop it?

hey guys i found out that the pain that i am getting is coming from wind that is trapped in my small bowle but still wanting to know whats coursing it ???

most likely it's your diet that is causing the gas.

Thank you will i am going to review my diet from tuesday or monday your time :P thanks for the info

I have had the J pouch for 13 years. Some days I might go to the bathroom 6 or 8 times and I normally have to get up once in the night, but it is better than the bloody 20+ times I used to go before the surgery. I have found that spicy foods burn coming out just like they do going in. I eat anything I want and don't have a whole lot of difficulty with any particular food. The out put you get depends on what you eat. Starchy foods seem to thicken things up while carbonated drinks gives loose out put. I have found that bathing instead of showering helps with a sore bottom. This surgery litterly saved my life and my quality of life is 100% better then before my surgery.

hey guys i wanted to know something else when i was in hospital when i had my ileostomy 2 surgery i was really malnurished and when they did my last opperation with the j pouch they gave me a feeding tube now since i have left the hospital and eating proper foods and a better diet i no longer need the feeding tube does anybody know how long you have to wait for the tube to heal inside because i now have had it for like 2 months i got a review with my doctor about it on the 26th of this month but i dont know if he is going to give me more time or is he gooing to take it out straight away if i could get you opinion that would be great :)

-1'

1

Hi everyone, I've had the Jpouch now for 10yrs. Read thru allot of the posts here and wanted to suggest something. After the surgery I had all the symptoms described here and seeked out a way to minimize the burning down there. I tried a product from GNC called colon pure - it is 100% pure fiber powder, not like Metamucil that adds sugars. Now, as we all know we must respect anything that is going to bulk up and slow down the process, so I began with 1/2 teaspoon added to about 4oz water, shake and drink - in the morning before eating. I played around with the time and amounts since surgery and not once since using it have I had burning, and my stools are somewhat normalish - bulky. Yes, I have blocked myself 2x during the trial period, but was able to catch it quickly and start the clear liquids. Just wanted to pass this along to the forum, please be very careful if you decide to try it out. Feel free to contact me and I'd be happy to talk to anyone about my experiences using it.....

hey guys its me again i was wondering after all your guys opperations did any of you guys have problems sleeping because for some reason whenever i turn on my right side to sleep i get the hurge to go to the toilet and did you guy when you first started all this did you guys go through your medication like it was candy please contact me i have no idea what to do and i am really tired

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Nathan, it's been 22 years since my surgery and I still get the urge when lying on my right side. Still taking 6 immodium/day and usually 1 Pepto Bismal tablet/day which helps my gas issues.

Hey, my name is Kim, I just turned 21 &had my colon removed just over a year ago because of Ulcerative Colitis. I just wanted to say thank you for the information on this page &thank you to everyone else who replied &left more tips.. it helped me alot!!

Hi everyone, firstly congratulations on a brilliant site, I just wish I had found it sooner. Secondly please don't let the account of my expierience put you off of having a pouch. I was just unlucky and I know lots of people who have them and lead energetic and successful lives and have had children after surgery too. I had my J pouch formed in 1997 and have had numerous complications since. My pouch formed in one procedure with a covering ileostomy. Immediately following my surgery I had a bad reaction to Metronisazole and Codeine and haven't been able to take either since. I also contracted the MRSA super-bug and an abcess at the join of the pouch to the rectum causing it to leak. The ileostomy had an abnormally high output which resulted in my being continuously dehydrated and needing IV fluids. I was hospitalised for 6 months recovering from all this and suffered severe weight loss. When the ileostomy was finally then taken down I began a very slow period of recovery which lasted 18 months. Since then I have hardly ever felt 100%. The least bm I've ever had was 7 times a day and twice at night, which doesn't happen very often. I have recurrent pouchitis which is normally treated with Ciprafloxacin anti-biotics. I also normally take 8 Immodium (Loperamide)a day. In March of this year I had my gall bladder removed by laparoscopy and suffered internal bleeding afterwards. The bleeding caused 3 large clots to form in my abdominal cavity and pressed against my small intenstine causing it to block. I had severe pain and sickness, went back to theatre to have the clots removed and had a central line inserted to rest the pouch and feed me by IV. 5 weeks later and 42 pounds lighter I recovered enough to introduce solid foods again. Since then I have suffered with "explosive" wind and bloating and needing the toilet on average 13 times a day and twice at night and have started to have a few "accidents". Even though I do pass a motion each time I go I feel that I have not emptied the pouch completely. I get pain in my abdomen immediately I eat (especially vegetables)and it feels like the food is stuck there. I also get really loud gurgline and rumbling sounds (more so than in the past). If I massage the painful area something normally gives and I can feel and hear the contents move through and get an urgent need for the toilet again. I've cut the Loperamide down to 1 tablet 3 times daily and I suspect there is a narrowing of the intestine again. I am due to go back to see the surgeon this week, who will probably prescribe antibiotics again. I just wondered if anyone else has had the same (or a similar) experience and found anything to help to cope with it. I can't face surgery again and am willing to try anything.
Any help/suggestions would be gratefully appreciated. Please feel free to e-mail me Susanhinton@btinternet.com
Thanks Sue - Canvey Island UK.

I'm 42 my colon ruptured when I was 26 I had ulcerative colitis. My surgery and recovery was tough but being young helped I guess. I had to wait three months to have the first part of my j pouch surgery then six weeks the second part to turn the valve on lol. I have had to take cipro
every day for pouchitis for about 8 years. If I try to go w/o or get lazy about taking it my symptoms come back quickly. I do not regret having the j pouch done, it has been hard at times. I can tell you where all the bathrooms are. Knock on wood have not had a day time accident but I do have leaks at night or flat out accidents. I will try some of the things I have read about here. I do drink a lot in the evening bc I get so thirsty. Will cut down on that. My other problem is a terrific weight gain and i really don't eat that much.
Any body else have weight gain?

I live in Canada and my son has a j-pouch. I've found this site extremely helpful. I found a vitamin water that seems similar to the revive. I noticed they have citric acid in them and they are high in sugar. So, can I assume that they are not enough to cause any problems?

hi i m suffering from ulcerative colititis since 6 years

drs suggest surgery for me but i m very confused about it that what is best for me surgery or not

i m taking medicine for ulcerative colitis asacol 6 tab per day nd imuran 2 tab. a day
my disease is moderate

is surgery is better than taking medicines

i also want to know about complications after surgery . after getting married is there some complications ?

i want to ask to any female who have ulcerative colitis that i hear from some1 that after surgery there is complications for getting married like pregnancy. 1 m 22 years female nd unmarried thats y it is tough to decide for surgery

i am taking medicine nd passing almost normal life but medicines r must to taken sometimes i have severe problem then i used steroids

kindly give me some suggestions i will wait thanks

Hello, I went thru very similar thoughts prior to my JPouch surgery over 10 yrs ago. The best thing that worked for me was finding an ulcerative colitis support group near where I lived at the time and was able to speak to others who had the surgery. My advice is to do as much research as you need to in order to make your decision.

thnx a lot for ur advice

I had my j pouch surgery about 20 years ago. I went on to get pregnant & have a healthy baby about 3 years after my surgery. I still go to the bathroom a lot, anywhere from 6-12 times a day. I am interested in knowing if anyone out there also has Interstitial Cystitis (also known as Painful Bladder Syndrome). I was diagnosed with this about 2 years ago. The symptoms vary with each patient but for me I end up going pee up to 30 times a day. My Doctor told me that a lot of people with this bladder condition also have Ulcerative Colitis. I am interested in hearing from anyone that has both conditions.

hi kim how r u howz ur life going on now . thnx for giving me reply . u was also diagnosed wd ulcerative colitis nd after how many years u operate ur intestine. i was diagnosed almost 6 years ago nd i have ulcerative colitis but in large intestine ascending colon transverse colon cecum r not affected by ulcer only descending colon , sigmoid colon nd rectum r affected parts. now i m taking medicine asacol nd imuran only nd i m almost normal now but dr said after 10 years there is chances to suffer from colon cancer thats y surgery must be necessary for that purpose nd if i get married then medicine should not be taken during pregnancy thats also problem bcoz i cant live wdout medicine so i just want suggestions from those people who are facing the same disease nd i m really scared from surgery . i sew the whole procedure of surgery on net on utube nd its just scaring.now i m almost passing normal life but after surgery i dont know what would happened .

is there really risk of having colon cancer thats y its necessary to remove large intestine nd having punich in its place

i will wait for suggestions

Just to give you my background info. I am 49 years old. I was diagnosed with Colitis at the age of 20 & suffered terribly for 10 years. I was taking 27 pills a day at a cost of $700 a month (thank God for insurance plans!) I had constant diarrhea, bleeding and cramping. I did give birth to a healthy baby boy at the age of 29. I honestly can't remember what meds I was on during my pregnancy. I didn't have any complications other than dealing with Colitis like I was prior to pregnancy. I did have nausea & vomiting for the entire pregnancy but other than that, things weren't so bad. I also was not able to breastfeed my son because of the meds. The year following the birth of my son I continued to suffer with severe symptoms. Sometimes sneezing would cause me to have an accident. My Dr. put me on Prednizone as a last resort. It didn't work for me & it caused terrible side affects. The Dr.,advised me that surgery was my only option. He also told me that after having Colitis for 10 years I was at increased risk of getting Colon Cancer. At the time he felt that approx. 12 inches of my colon was diseased with Colitis & that he would only have to remove that much. So at the age of 30 (and having a 1 year old son) I went for the surgery. When I woke up I had an Ileostomy and they told me when they opened me my entire colon was diseased so they had to remove it all. I did have a rough time after the surgery but that was because I had a lot of complications that happen to about 15% of patients (according to my Dr.) I won't go into detail about all the complications because they don't happen to everyone. They had to do my take down surgery earlier (after about 6 weeks) because I had a twist in my small intestine. I was so glad to get rid of the bag. I recovered a lot quicker with the 2nd part of the surgery. I was off work for a total of 4 months altogether. My pouch has worked great for me over the years (it's been 20 now). I have never had Pouchitis (that I know of). I do have between 6-12 BM's a day. I have never really restricted my diet. I eat what I want & some days I go to the washroom more than others. I also have a lot of gas, although I can pass it normally as well as on the toilet. I have taken Imodium (4 a day) for the past 20 yrs. My surgeon says there is no risk from it. Sometimes I go off it just to see if it is making a difference & I always have the same conclusion. It definitely helps save me trips to the washroom. Approx. 3 years after my surgery I gave birth to another healthy baby boy. My pregnancy was normal with no complications & the morning sickness only lasted the first 3 months. I have had other health issues over the years which are all apparently related back to & connected to the Colitis. Here is a list: Arthritis, eye problems (including redness & dry eyes), dry & very sensitive skin. The most recent illness is Interstitial Cystitis. I was diagnosed with this bladder condition about 2 years ago. A lot of people that have this suffer a great deal of pain. Thank goodness, I don't have that symptom but I do have to urinate about 30 times a day. I have been able to lower that number with medication, however I still go way too much. I sometimes feel I am destined to stay in the bathroom for the rest of my life. I guess I am used to it by now & I always try to look on the bright side of life. It could be much worse! I am curious to know if anyone else has Interstitial Cystitis as my Dr. told me that many people with this condition also have a history of Colitis. In conclusion I would like to say that the J-pouch surgery was the best thing that could have happened to me. I have never regretted it & I was so grateful that I didn't have to use a bag for the rest of my life. It is so much better than suffering the symptoms of Colitis. Yes, I still go to the washroom a lot but I don't have bleeding, cramps & diarrhea & I don't have to take 27 pills a days. Believe me, there is life after J-pouch surgery. Don't be discouraged. You can still lead a great life! Feel free to email me if anyone has any questions.

hii today i received my biopsy report result nd result is gud no dysplasia seen.

i want to know about pentasa either pentasa is gud or asacol if anyone have knowledge then plz tell me

Whats the closest to pre-colitis normal stool to most people get?

hi all
i'm sooooooooo glad, to found this site. I'm not alone.
I'm Mongolian. I'm 31 years old. When i was 20 i was diagnosed with UC. Due to UC, i had my j-pouch surgery 2009.
but i have had problem after my surgery since now. I go to toilet about 30-40times a day. and itching, and burning. anyone help me. it is so nerves. I can't sleep at night. but i drink loperamed 8mg a day. but it was not good for me so many gas. sorry my english is not good i can't write anymore.
alimaa

I suffered with UC for 15 years before having my surgery. I had my j-pouch surgery 3 weeks ago...and it has already changed my life. I am slowly adding foods to my diet which I could never eat before. I only got to the bathroom 4-5 times a day (normally when I have to pee). My secret is to eat applesauce with every meal. My quality of life is better than it has been for years. I would highly recommend this surgery to anyone who is suffering from chronic issues. I am 63 years old, and I feel like I am 43.

im so glad to find i sight that relates to my problems i had u.c for 17yrs got diag when i was 19 evan tried being a vegan for 20mths to fix my bowl but did not work had it removed may 2009 j pouch done have had no major problems just going to the toilet around 6 to 8 times a day witch isnt to bad but when i do go its a small portion this will happen 3 or 4 times then the 5th time its huge explosion time. At night i can go from once witch dosnt happen often to 8 times a night then i so fatige i have a day of work witch sux big time i try and watch wot i eat no faty food and take metamucil capcials around 8 a day and 10 to 12 gastostop as well i live in australa in north qld and there are no places hear where u can get help i just wont to slow my motions down at night to not going would be greight thanks tony p.s im haveing another colinoscapy on the 02 /12 /12just a check up i need to go to brisbane for this

I had my colon removed in 1996 and j-pouch soon after. I am now 42. I had been exhausted , weak , lethargic, short tempered,confused list goes on. To make a long story endless I discovered I have a potassium deficiency . It causes those symptoms and a few more plus a lack of potassium causes you to go to the bathroo
More. Potassium helps regulate fluid in the bowel. Dow two weeks I have been drinking V-8 in the morning and taking a generic potassium pill at dinner and all my symptoms went away and have cut way down on bathroom trips. I was really sick with heart palpations, shortness of breath and high bp I can't believe it took do long to figure this out but I am a new person .

NC Starry

Ps the v-8 has the most natural potassium I could find way more than sports drinks with few calories and very healthy, has not hurt my system.

High starry you say you have the v-8 juice does that go through you. Iam now 40yrs old and feal the same as you exhusted ,weak,tierd all the time do you get up at night to go bathroom im up anywhere from 2 -10 times a night and i get very cranky with no sleep any help would be great thanks tony 15/11/11

Barry Walshe FARTS TO FICTION. Tried your remedy for gas. Absolutely spot on. I've had my j-pouch for 23 years and recently the Doc is suggesting it's wearing out. Had number of blockages over the last 10-15 years and acute pouchitis with bouts of serious bloating. Have been taking Cipro and Flagyl together then back on to VSL#3. Hoping I'm going to prove the Doc wrong. This site is fab. Will start recording foods to compare with what works/not for me. Having goat yoghurt as it seems to be more natural than the high-commercial stuff that's loaded in sugar. Would love to know if anyone else has tried the Cipro/Flagyl combo and what their results were; how long they took it for, etc etc.

Jude, what's the significance of getting VitB injections? How does that help pouchitis, etc?
Also UC is in the autoimmune area and I understand that it's common to have thyroid problems and various other organ/health related problems purely because of the autoimmune deficiency.

Tony , no the veg juice makes me feel good, as well as full. Fiber works both ways you need bulk to slow the gut down too. I also take a powered B vitamin.
Try a potassium pill if the juice bothers you. I for myself find getting vitamins and minerals work better if I get them as natural ad possible.

Ncstarry
Ps the potassium has cut way down on my bathroom trips in general and usually once at night

I am having alot of immune system problemns (reactive arthritis, urethritis, styes in eyes, sores in mouth, etc) and wondered if anyone has had this problem...and does removing the j pouch stop them? Thanks to anyone...

PS I had the j pouch and colectomy for severe constipation...the reaspon ppl might still have constipation, is due to stenosis of the opening to the pouch and scar tissue...I have to get dilated regularly or I go 2-3 days without going at all....so uncomfortable...am thinking of ileostomy, but do not want to go through it if it won't help with joint pain and urethritis....also on Medicaid and they do not cover "proper" appliances....thanks

hello everyone,my younger brother is 25 years,he was diagnosed with uc in 2007,he was on steroids and immunosuppressants for more than 2 years,nothing helped.doctors suggested total colectomy which we agreed and was done in march 2010 followed by j pouch in september 2010.it worked well for almost a year and 2 months except for normal post operative complication described here unless yesterday when he woke up at 6 am in the morning and felt as if somthing bursted in her abdomen and he ended up with severe pain and urinary incontinency.we rushed to hospital where ultrasound revealed intestinal burst with peritonitis and emergency operation for intestinal repair and to clear all infection was done.they have again puthis blood pressure is low since then with odema all over the body.he is on ventilatory support.doctors said that he developed ulcer in pouch and one of the ulcer has bursted and it is rarest complication that has occured after sucssessful j pouch surgery. has anyone experienced this.please suggest

can anyone tell me.... are there any vitamin/mineral deficiencies us pouchies should be aware of? and if so what symptoms we need to be aware of. are there any supplements that i should/could be taking?

Just stumbled here... I've had my J Pouch for 20 years (had my surgery at age 19, had had UC from age 11 to then, I'm 40 now), and I'm doing fine. My only issues have been pouchitis maybe four times over all of those years and I sort of blocked myself a few times eating a bit indiscriminately (right at the exit... eventually blew whatever it was out of there). I have had extremely rare issues with leakage (mostly in the beginning). I can eat pretty much anything I want (I am lactose intolerant, have been since about age 12, had the test done then, so if I do eat dairy, I just know I'm going to be a gas ball), but I don't eat pork and very rarely eat beef; I am a pretty moderate eater overall, chicken and veggies, etc., and I try to exercise when I can. Looking at the taboo food list up there, I can eat most everything on there, but have to go very lightly with seeds, fiber, etc. and when I do, I must drink a lot of water with it. Also, might I add, chew, chew, chew your food well! I've been very fortunate. I had my surgery completed by Dr. Wolfgang Schraut in Pgh, and never had a complication or problem. I was able to only have one daughter naturally, though, due to the incredible amount of scar tissue I have... one thing to think of if you're young, might be better to have your children THEN have the surgery... women have something like a 53% infertility rate after it, related to scar tissue, etc. from the intense pelvic floor surgery it involves. Good luck to everyone who has the surgery... I wish you as much luck as I've had.

please where can u get pouch covers in bundaberg qld? i am looking for my grandmother....

I had emergency colon removal surgery Aug. 6. Unlike most of you I had not suffered with UC for long. It started with Uclerative Proctitis only a little over a year before surgery. Was able to control flare ups with only suppositories, being that it was confined to rectal area. The final flare up took over so rapidly had no idea this could be the outcome. Call me nieve, but never had heard of such a surgery prior to having it. Just had my J-Pouch surgery Dec. 2. I am recouperating at home now. Doctor pleased with how things went, but have to go for check to see if rectal area staple are healing well. Lots of prayers have got me through this. Have a ways to go, but happy to have found this site to have some ideas of what to expect along the way. This second surgery seems to have more pain with it than first. Has this been anyone elses experience? Thanks & God Bless.

I had my first surgery on Aug 2nd and second on November 8th. I had to have it in three parts due to how ill I was. I have had UC for 18 years. I am shooting to have my ileo closed up and be 100% on my j-pouch in January. I had lots of complications with my second surgery...kidney problems, output problems, etc. Now my ileo output is very high. I'm on 8 Imodium and 4 lomotil a day and Metamucil. On top of constantly emptying liquid out of my bag...I'm pooping mucus and blood 12+ times a day. And it constantly feels like something is jammed up my ass.

I can't stay hydrated no matter what I do. This is hell. It's worse than UC minus the Prednisone.

Anyone have similar bleeding issues?

I am so happy to have found this site and reading it makes me laugh and cry. I'm grateful, don't get me wrong, I just thought I was the only person who shit themselves and couldn't fart! I'm single and for the last few years I haven't wanted to explain that I have ass problems, but I make jokes about it now. If people don't like it, they don't have to listen! I'm alive and thats whats important to me. I am a triathlete and have learned how to balance my body so I stay hydrated and keep my sodium and potassium balanced. Its a life changing disease, no doubt about that! I'm so glad i'm not the only person who has anal leakage...lol... really, reading this stuff has helped me out so much. Thank you to all!!

Chad asked about bleeding, oddly, when I go for long runs, I have to go to the bathroom as soon as I get home and often have blood. I don't know why??? I'm fine after a long cycle or swim or boxing, its always the running??? and idea why this might be??

Hey guys i want to know why i have extreme leakage and sometimes .... mostly acid poo as i like to say it i have tryed stayin away from acidic food and spicy foods tho it still burns like hell even when i have stayed away from them and i am going through my numbing jelly so many times that i am spending like $60 a week on the stuff and hardly getting a result but i can tell you one thing medication that has Lopermide in them is a good sent sending out rapid bowle movements back into a rythem again :P

I can't believe there is no mention of the specified carbohydrate diet on here!!! Anyone who is facing a colectomy should without a doubt check into it, it may just be your savior, as with so many others. I'll tell my story later, gotta run, I just had to mention this as I'm completely dumbfounded that there is no mention of it here...

Whoops! I forgot about the book - Breaking the Vicious Cycle

I'm 61 and have had my j-pouch for 3 years now due to a near fatal attack of C-Diff and am still clueless as to where and how I picked that up. Antibiotics did nothing to help so the only way to save my life was to have my totally ulcerated colon removed (I was headed towards a mega colon rupture. Then after the hook-up surgery, I got a staph infection in the hospital and then a fistula (hole) in the small intestine from the staph. Couldn't eat for 2 months in the rehab center and had two drain hoses running out of my infected abdomen while I lived on a "magic milk shake" through a pick line during that time.)

But eventually I healed up and went back to work. Now after 3-years with a j-pouch, I have been diagnosed with gout-like symptoms. (Also getting ganglions in the joints of my right hand I think due to the crystals collecting in the joints from the high uric acid associated with gout.) Looked on the Internet for a correlation between j-pouches and gout but can't find a connection. Urologist stressed the importance of drinking 8 - 10 glasses of water a day to keep hydrated as dehydration can lead to high uric acid, hence the gout. Feel caught in the middle between a gout diet and a j-pouch diet. With gout you avoid red meat and fish and eat veggies, beans, low fat dairy, and salad -- all things that aggravate my pouch. I use the bathroom at least 10 times a day as it is and plan my travel around the ability to get to a bathroom. Even a trip to the mall can be problematic. I have given up flying because of air line delays and when traveling on road trips eat very little. I seem to live on carbohydrates and sweets because the pouch seems to accept them -- but again these are bad for gout. Just writing this as a heads up for others as I believe the gout came about because of my limited diet due to the j-pouch and to the loss of fluids "out the back door." There has to be a balance in there somewhere and I just need to find it.

For those of you with irritated skin, Calmoseptine ointment is a great help and you can alternate with Vaseline as well.

And for all the suffering - physical and emotional - this experience has caused me over the last 5 years (2 with an ileostomy bag before the pouch), I am still alive and made the choices necessary to still be here with family and my grandchildren. Life with all these "adjustments" is still better than the alternative. You young people remember that.

Hi first time visiting this or any other site, Diagnosed with F.A.P in Sept.1987 @ 14yrs old, 2 days later had first bowel resection where surgeon took 95% of Lg bowel with (I was told by DR) 1,000's of polpys. Lg bowel was covered in them. The polyp's have now been removed from stomach and sm bowel. Been Scoped every year 2-4 times a year since (pending how aggressive disease got) July 2009 Scope, Dr stopped count @ 100 polyps in 15cm. 14 mos later stage 1 of pouch operation completed(Sept'10) stage 2 Feb '11. 2 days later rushed into Emerg, with Severe abdominal pain. Spot where pouch connected was leaking CT scan showed pockets of fluid in abdomin, turned out to be infected blood clots. Now for past 3 mos dealing with on again off again nausea, cramping, weakness, at times low grade fever watery stool 8-12 x's/ day ( normal prior to all this was 4-6 x's/24hr). Any thoughts?? Thinking maybe patial obstruction due to adhesions? waiting to see surgeon

I live in Ont. Ca and what works for me, when my bum starts to burn I use "critic aid" cream, *important to keep bum clean* I also take 1 tsp of metamucil in yogurt/apple sauce (per day), surgeon recommended this, he said it is more effective with the natural fibre in it. I am slowly introducing new foods to my diet, though nervous of some raw veggies. Thank you for this site. Dealing with this for a long time, nice to read what works for others. My son is 8yrs and this disease has not skipped a generation yet in my family....it only gets more aggressive.

Hi Everyone with a J pouch.
I have had an s pouch for over 30 years now,its like a J pouch but uses 3 loops of ileum instead of 2 but the idea is the same,had it done for U/C.
I still keep a food diary as to what I can eat,to stop butt burn and it seems to work and have a blood test done every couple of years to see If i am deficient in any vitamins etc,may need b12 in the future.
I try and live a very active life and have found that the less you worry about how your pouch is working the better it seems to be.
Just make sure you drink plenty of water.
best Regards from Australia.

I must say, you all are truly inspirational to me.

My husband was diagnosed with UC in 2004, one month before we were married. In July of 2005 he underwent J-Pouch surgery without having to receive an ileostomy. We were in the hospital for about 4-5 days before going home. It has been 6 years since his surgery and I must say, physically and emotionally he is better everyday. We continue to think of what we can do to make his life a little easier (we should own stock in Gatorade Propel), knowing where the bathrooms are in every public place we go, trying to eat better, etc. But, as hard as it is to imagine, exercise has seemed to be what has made the largest difference. He works in a high stress industry (accounting) and last year, began running again. This past October he ran the Chicago marathon and completed another marathon a month later. I feel as though it has increased his confidence and he says it helps him to have more control over his muscles. We know this will be a disease we face for the rest of our lives, but I think sharing what works is so important.

Oh yes, one other trick I wanted to share was to use an inflatable donut cushion when driving long distances or when your bottom is irritated. You can purchase these at your local drug store in the medical supply section. It is simply a circle with the middle cut out. It reduces the amount of pressure you are placing on your bottom. My husband has brought it to church on occasion. The Crohn's and Colitis Foundation is another wonderful resource. I pray for you all everyday.

I was diagnosed with F.A.P. in 2004 at the age of 46, I had my large intestine (including the last 6 inches, rectum ) removed. Several months later I had the reversal ("J-Pouch"). The surgery went well followed by a month stay in the hospital.I had a few rare moments and I'm happy to be here. My son, in 2005 had the surgeries as well and my daughter in 2006 had her surgeries. It's been a rough road. My husband was diagnosed with Multiple Sclerosis in 1988 the same year my daughter was born. I thought things were rough then:) In 2007 after my husband had a life threatening fall as I took him to physical therapy and he was resistant to doing anything I would tell him he couldn't kick dirt on my grave if he couldn't walk. Then I was diagnosed with a tumor attached to my aorta and small intestine. He pushed to get better and we fought to keep him home. In 2009 I finally knew we were up to our ears in health issues. My husband has been in a nursing home since 2009, we're married 30 years and we're 53 and 55 yrs. young. Our son is 27 and our daughter is 23 and will graduate with honors and her masters degree this May. She has held a 3.9 average, I managed to hold onto my job, receive aggressive chemo. and got a promotion. There is a Thyroid link to the equation of F.A.P. as I belong to the registry and I have a nodule they look into. Stand back because it's seven years later and I go to the bathroom on a good day 40 times. I'm soar and found my own things to help as the doctors were at a loss. I watch everything I eat sometimes I pay a price and say never again! I'm 4'11 and gained weight for the first time this last year. Because I go to the bathroom so frequently I'm always vitamin b or D deficient, I do have problems as I don't pass gas unless you count the cappuccino maker sounds from the bathroom. At work I go back to my desk and feel like I delivered a litter of pups and sometimes that's just what I look like too:) I made a bucket list and I have had to add to it. I pray,ie. sometimes while on the toilet you would think I think God is Monty Hall and it's "Lets Make a Deal." I cry because it hurts so much and I would like to go back to not thinking about where the bathroom is when I'm out. I worry about my children. I give thanks for everything and yes we have our down days. I'm thankful for our surgeon and I'm thankful I have finally found a place to write it down. Ah, at last a safe place to fall, where someone gets it and I don't have to feel like I need to explain the whole bathroom situation. Yes the negatives are here if I look. I love my days, I walk for those that can't, I run when I can for those that can't, I do because I know there is someone who I wish they could too. I was diagnosed with Polyps in the virgin small intestine a few days ago and I go in for surgery Jan. 12th. Yes, I'm unhappy about that but I will do it because I can.Please share information, educate those around you, be kind even on the days you think you can't and when you're sitting on the bowl think of how far we've come. Happy Holidays to all and thank you, you're all so amazing!

My daughter is a few weeks away from take down. Please recommendthe best cream to get in Australia. I'm not familiar with the ones I've heard. Thanks.:)

Hi Sue it depends on what your daughter's skin will do when it comes in contact with skin if its a small rash try some baby cream i use Zinc&Caster Oil you can get it at woolworths or any phamacy or if under doctors orders you can get Xylocaine a numbing Agent its a over the counter jelly but cost abit more at least from $16 to $24

poo i mean haha

Thanks Nathan! This whole thing caught us by surprise a year ago and I would like to be prepared for next step. My daughter is 27 and is looking forward to putting this behind her ( no pun intended) and getting back to her life!

Thats ok Sue i was dianoised in april 2009 with UC and had my J pouch formed in March 2011 so it does get you by surprise good luck with your daughter :P

Hi my names heather im from new jersey, and I love this page!! So nice to hear stories from fellow sufferers...sooo funny to hear some of the storys I also experianced.heres my story. I had uc for half my young life. I finally had my surgery in 2002. I had an amazing surgeon. Dr. morrey nesbaum in philly. I had no real issues for yeeears. Never followed any diet, ate and even drank at times w no incodent. I got off lucky. In 2010 I found out I was pregnant with... TWIN GIRLS! I was petrified! Didnt think I cld have kids after that massive sergury.the pregnancy was really rough, but my girls were healthy six pounders and now thier little monsters.anyway back to my pouchyness. I found after my c section my pouch was messed up. I now get alotta kinks were ny pouch litterally flips...sooo painful.i passed out twice last time from the pain.im sick alot now, and im bedridden like b4 my opperation. Im on pain meds and I hate it but its ness. Im told if it keeps blocking im going to need another surgery to pin my pouch to a metal rod? So im finally now starting to make a diet for myself. I have alotta ummm messes, I guess.never happened b4 really.i can only pass gas on the toilet...that is a new problem too.i find gas ex a life saver and beno goes on everything. Im in the peossess of buying a juicer...im just sooo bad at following a diet.i love potatoes and apples but both block me up.anyone on here go on ssi disability because im lost as far as juggling work and these new pouchy problems.

I have had a J pouch since July 2010 and had it joined up in Feb 2011. I have been suffering with a terrible itch esp at night time but my consultant will not give me anything for it...he just say it will pass!!! But its getting worse as each day/night arrives. I was told by a friend to perhaps try a worm tablet as they like to itch you like crazy in the evening when thet get very warm inside you! So i went to my Chemist and got a pack and have taken on yesterday and touch wood i have not had the itch! So hopefully that was the problem, but now my bum is VERY sore. Do you think its because of the tablet or because iv just been to the loo alot through the night???

this is a touchy subject Fiona i have had my my operation in the same time as you and i understand what your talking about. now with what your have told me i think it might be your phecies as it can be acid after eating acid food or taking new medications or even regular medication but the best thing is to see your Doctor and he will do something for you and in the mean time if its getting worse try and go to the chemist and ask for something has lignocaine its a over the counter drug and its a jelly type medication.

I've had my j-pouch for 3 months now. I can pass gas with relative ease, my trips to the BR are dependant on what I've eaten. Tomato sauce,not so good. I eat 3 squares a day, (helps with regulating BR visits), take metamucil with almost all meals. I can eat mushrooms, but stay away from OJ and Lemonade. I still have accidents sometimes at night, maybe 1 or 2 a week but they're VERY small as I wake up immediately. Never have accidents during the day. I used to log everything I ate and trips to the BR. Now, I don't simply because it makes me too obsessive about the whole thing. I eat rice a lot and for veggie consumption, I drink a little can of V8. All in all, its been a good ride AFTER the takedown. Reading all the other posts, I feel very blessed to have my situation. It could be SOOO much worse. I wake up between 2 and 3 times a night down from 6 in the beginning. I also dont eat a meal after 6:30 PM. Hope this has given somebody out there hope. It was a grueling ride before the takedown but its so much better now. Email me if you'd like. Posted 1/9/12

Now i know this might be a obvisious question but i wanted to ask if anybody had depression after there surgury like up too a year as i posted in other comments above i have had alot of complications with my J Pouch in terms of it trying to take in fluid and its kinda getting me down and its turning me to Alchole for relief i am scared that i might become an alcholic by 20

Hi Heather, I too am 3 months out of surgery. I was doing fabuluis up until a week and a half ago. I now suffer from cronic pain, burning and feeling as if my bottom is going to explode because, what I think is my pouch is swelling, this is also followed by numerous trips to the bathroom and production of blood. I went to my Dr. and he perscribed two topical ointments, stating he thinks it may be a fisher. However the ointments do not seem to be working, one with hydrocortisone the other is supposed to be a muscle relaxer. I am at the point now that I am not eating. I have not had a meal in a week. I have had samll hand fulls of crackers once a day for the last 3 days. Today I have not eaten at all. I feel better however this all comes with a great deal of gas which causes major pain and pressure in my bottom. I have always been very careful about what I eat and have stayed away form red meats, green veggies with to much fiber, no sugar, chocolate, tomatoe products spicey foods etc... I am looking to fast for a few days and then reintroduce foods one at a time along with the probiotics and psysillium husk. I have cut out all sugar and caffine, and white flour products. I am taking a natural holistic approach this time around. I just wish I could get rid of this pain, at times it is so excruciating I can not tolerate and I am doubled over in pain and crying. Any suggestions? I am open since this is all new to me.

by the soundsof it Roberta you might have to go to the Emergancy room. not to sound un helpful but they can help you with this and not eating food is going to have a major effect on not just you but your family so take a trip to the emergancy room they can help you they can get a dietian in to help with all your needs and they can prescibe you something better.

Anyone use Colestid?

Hi Roberta, My daughter is 8 weeks since pouch formation and is waiting take-down. She developed all your symptoms which sound like pouchitis but we didn't think that was possible before she started using the pouch! She is in hospital now and we are hoping pouchitis treatment will fix things.

My daughter was diagnosed with UC when she was 15 (Oct 2008)She had a colonectomy before she was 16 (there was no choice as he had been so ill that she almost died twice)and had an Iliostomy created, she had that stoma for 14 months then she had a J-pouch operation and a tempary stoma while the J-pouch healed She had a lot of problems with both stoma's as she has very sensitive skin and no matter how they tried the could not find any bags that suited her. The second stoma also caused a new problem, it kept moving and causing her a blockage she spent 8 weeks hospital with the doctors and surgeons trying to solve the problem but in the end they had to bring forwards her third operation to close up the stoma, but first they said they had to check the intestines for any problem, fortunately the intestines were fine and the did the final operation. She's now 18 and seems to manage her bowel movements quit well although she has had pouchitis a few times and gets watery stool sometimes. She does take imodium tablets when she needs to but the 'stoma' nurse told her to eat marshmallows as they help to thicken the stool and help to reduce the frequency not sure how well it works as my daughter is unable to eat marshmallows but it's worth a try if you are having difficulties! hope this helps God bless you all X

This site is awesome. I was wondering if anyone has issue with gaining weight after having the JPouch surgery. I had surgery about 6 months ago and I am still losing weight. I am down to 147 from 220. I just cant seems to stop losing weight it weird. I am blaming it on the way I have to eat now its totally different from before. I cant really eat any fatty foods or I get bad diarear as well as hot or spicy food. Anyone else with this issue.

Jennifer: I am also 18 and had my opperations done in the same time line as your daughter and with the same thing as you Daughter UC i reconment eatting pasta its very good for us (J Pouchers)
Scott: What you have describe there is what i am having right now i have gone from 75kg to 60kg i stayed at 55kg when i was on my last opperation then dramtically i am losing weight i am now 51kg any further and i might have to eat up in hospital again to gain fat but atm i am just adjusting my diet to include more things that have a high calorie content and High Energy i find that sustagon is a good replacement for a full size meal with all the benefets of so many vegies and stuff but nothing beat good old Meal time :P Email me 0if you guys need help and never let it get you down its hard for me to say because i have periods where i am just down right depressed but i do have my good days so i hope i helped abit.

Nice post. I've had the j-pouch for 7 years now and can eat almost anything but super spicy foods and raw spinach and lettuce. After a lapse in a proper diet last year, I had a bout with pouchitis (very painful/I thought it was constipation) - the docs treated it with antibiotics. Because of this I started eating Activia once a day and taking a probiotic supplement from GNC, I've been good since. Bananas and creamy peantut butter make a body good too. The funny thing is when people learn that I don't have a colon or an ostomy - its nice to read experiences from people who are similar to mine. Keep living and loving!

Nathan I am very sorry you lost all that weight. But I am right there with ya. Keep the faith I am trying to stay positive and good things will happen.

Jason My gastro doctor recommended PB8 and VSL #3 so thats what I been taking I take the PB8 to conserve the VSL #3 due to the cost of the VSL #3 crazy prices and where I live and my insurance will not cover it. I find I also have to stay clear of the spicy food as well as the salads also just like you lettuce kills me. Needless to say I eat a lot of chicken and rice and potato's. Keep the faith all life is great just a few bumps along the way.

This is great information and like some I also regret doing the surgeries, I can't stand the butt burn!! But all in all, I have to say that I don't have a lot of the problems that I read that others face. In some ways I feel lucky, but in others I feel ungrateful and I know I shouldn't! One day I will be happy that I did this, I think it's more psychological with me more than physical, although I still do not feel as strong as I did before the surgeries. It's been a year and 2 months. Well GOD BLESS all of YOU! As for me that's all I keep asking, is GOD please carry me!!

I have a temp ileostomy, I should be getting a jpouch soon I just have to a few more itests. I'm 15, and after reading some of the posts I really don't know if i wanna jpouch. I dont want to live the rest of my life pooping 10 times a day. it's just really hard to accept all this. Being from homecoming queen to never talking to any of my friends again bc I'm so embarrassed, it's just crazy how fast things can change. Just right now I need someone to say something positive about a jpouch lol or just talk to someone who knows what I'm going through. Blink1eighty2@yahoo.com

Evie:
I have had a jpouch for 3 years. I went from no symptoms to needing surgery in 18 months. Looking back I suffered with UC since high school, but was 38 before is hit me hard. I hated the ileostomy! It would get "gas" inside and I looked like an alien was about to burst from my side. I have always been thin and wear form fitting clothes. Not so with the ileostomy. It took a few months after my jpouch but I was back into my normal clothes. I watch what I eat and do not find myself running to the bathroom during the day. I am able to exercise. People have no idea of the health issues I have unless I tell them. There are times when I eat things I should avoid, and I pay for it. That is my fault, not the pouches. One thing this site has taught me is that everyone is different with this. Don't let others scary stories effect you. Also, do not hide from your friends. I know it is embarrassing. Real friends will be there with you through the whole experience. I sent a few of my close friends to this site so they could read about experiences people have had. It helped them get an understanding. Good luck and prayers that all goes well.

HHHMMMM, Wow I am really happy I found your website here,
I have had my j-pouch for 3 years, and am in the middle of my first pouchitis.
I am on some antibiotics, but I am not too sure if they are working.
Here are some things I am curious about the most,
I have found the same thing about the chronic coughing, and there is constantly yellow mucus coming up...was/is this experienced by others, and further more It dissappeared for the year i was in vancouver, and returned as soon as i was back in ontario?
I am also worried my pouchitis could be because i recently moved in with a dog that sheds a fair bit, and am wondering if this could cause troubles?
and does marijuana help with a j-pouch?
because again since returning from vancouver i haven't smoked pot at all and my bowel movements, consistency, and even the foods I could ingest previously really do a number?
I also keep track of the amount of times i have farted, and am incredibly proud whenever i have a good one without blasting the back of my underwear.
anyways thanks to everyone, for all the great insights.
- Randall

Evie - Due to UC, I had the j-pouch surgery in 1991, and the take down 6 weeks later. It has been 20 years for me, and I have done well. Of course it will take some adjustment, and time to get used to the pouch. I went through some anal irritation, so used A&D ointment. I'm sure I struggled with having to use the bathroom slot, but it became a distant memory, and improved. I still can go 6-10 times a day, but it becomes a part of your life. I was still able to play all the sports I wanted too. I was engaged at the time of my surgery, got married 8 mos. later. A year after that I had my first daughter vaginally wo complications, and my second daughter 19 mos later, no complications. My doctor performed an episiotomy across instead of up and down to avoid causing any sphincter muscle loss. The reason I came to the website is because after 20 years I have had some pouchitis, and some problems with incontinence at night. I have taken Cipro, but don' want to stay on an antibiotic if I can help it. I will also try being more conscious of what I eat to see if that makes a difference. I also take VSL#3, fish oil, b vitamins, and iv iron when need. Vitamin d drops are good too.
This is a wonderful website. Usually people go to a website when they are having problems. I'm sure there are a lot of people out there doing very well, so haven't come to this site. There's also a lot of people willing to help. I've gotten some great tips thanks to this site. Good luck to all!

Before this all happened to me before getting a jpouch and before I got Ulcerative Colitis I loved spaghetti and meat sauce but now it give me terrible diarear and it hurts really bad coming out. I was wondering has anybody else had this issue and as anyone found a cure for this. I was thinking if I used a sauce with super sweet Italian tomatoes if that would make a difference I was wondering if anybody else has tried this.

I had UC for many years, j-pouch surgery in 1999. Since then I've had 2 bowel obstructions and also a hysterectomy. It seems that lately I have been fighting the diarrhea more, feeling exhausted, then I tend to get depressed. This has happened before and goes away eventually. I have experienced pouchitis on and off for years. I have a standing prescription for cipro. My Dr. suggested a pro biotic called VSL-3 and I see that others use it. I have called a few pharmacies and they don't carry it. Do you have to order it? I think I need to start over with a better diet, etc. I know I'm so much better off than when I had the UC, though. It is really nice to hear other people express their issues. It is hard for others to understand what we deal with. I'm really glad I found this site. Thanks.

You can get VSL # 3 on line at sigma tau. Just google VSL 3 , and it will come up. I've used it for years, and I definitely think it helps. I get pouchitis here and there, but no cramping. I also think fish oil helps too.

Michele - My gastro doctor out of Boston also suggested PB8 I got it at the vitamin store. This was you can take less VSL#3 because you will quickly find out that VSL#3 is very expensive so I mix the 2 that way getting more out of the VSL#3. If you have any other questions you can always connect me via email.

Hello everybody! I've had a JPouch for approx 10yrs and I have been fairly stable, aside from a few normal "suregery-related" complications. Last year I was diagnosed with cdif (not sure about the cause), but the JPouch was severely infected, to the point that I developed several ulcers around it.. The cdif cleared out after a few weeks on Cipro. A week ago, I had a colonoscopy and was diagnosed with Pouchitis.. When I looked at the pictures I noticed the same ulceration throughout the pouch.. I am in a high dose of steroids as well as VSL3..

Has anybody experienced this?
Also, does anybody have issues with drinking alcohol?

Hi all - what a fantastic site, kudos to you Will and to all of you, continued health and happiness! I've had my JPouch since 1999 after being diagnosed with rectal cancer. I've struggled with leakage on and off during that time and have mostly learned to live with it, but I'm wondering if there's any harm in using warm tap water enemas a few days a week? I have noticed they can help lessen the symptoms but can't really find any info about it out there.
Does anyone do this? Thanks!