Ulcerative Colitis
I was a patient of 6 GI Specialists and was hospitalized 12 times during the 3 years I had ulcerative colitis. Here are my condensed notes.
Good Foodavocadobanana berries butter cereal - groovy grahams, honey crunch & oats, oats & honey granola tea - chamomile (calming), peppermint (helps digestion/mild pain reliever), decaf/green tea cheddar cheese (when not lactose intolerant) cranberry juice ezekiel bread farina fish - cod, flounder, halibut, grouper, salmon, sole ghee (clarified butter, try this instead of butter) ginger goat cheese goat milk green tea grape juice hard cheese honey kiwi licorice (multiple beneficial qualities) meat - beef (lower fat content better), buffalo, lamb, turkey, veal, venison mozerella mushrooms (shiitake are supposedly good for autoimmune disease) okra olive oil orange (watch acidity) pineapple (beneficial to immune system but watch the acidity) Recharge (drink) Brown rice pasta scrambled eggs vanilla soy milk spelt bread (no yeast) spice - basil, cinnamon, majoram, nutmeg, parsley, sage, sea salt, stevia, thyme squash tangelo (watch acidity) watermelon yogurt (contains acidophilus) - try to get the greek style zuccini |
OK Foodcelerycheese - parmesian, ricotta, romano chocolate (has laxative qualities) garlic (causes gas, heartburn) gatorade grapefruit (high acidity) ice cream (causes gas) italian ice ketchup maple syrup meat - chicken, pork, tuna milk (causes gas) oatmeal (fiber content) orange juice/oranges (acidity) shellfish (calamari, crab, shrimp, lobster...) potato sour cream chocolate soy milk tomato juice wine |
Food to Avoidappleapple juice bacon beer calzone carrageenan (ingredient) corn cranberries egg nog fast food hydrogenated oils mint chocolate chip ice cream lemon juice margarine onion peanut butter nuts pepper pizza popcorn pringles teriyaki sauce soda soy sauce white sugar tomato sauce velveeta cheese wheat products (taxes system, made me tired) |
Supplements / Alternative
- A naturopath created a tincture for me that contained: Licorice, Geranium, Wild Yam, Oat, Comfrey, Shepherd's Purse, Bayberry, Goldenseal, Una de Gato, Wild Indigo, Ioquat
- L-glutamine (I took 500mg Country Life brand)
- FYI (For Your inflammation) by Garden of Life
- Suprema-Dophilus (probiotic blend)
- Tyler Nutrizyme
- Natural Factors RevitalX - this stuff helped significantly
- Fish Oil (Omega 3 fatty acids) - unsure if this helped
- Chiropracty - Unsure if it directly helped the colitis but it did make me feel generally better
- Boswellia - no noticeable effect (I didn't try it for that long though)
- AMP (Aloe) - no noticeable effect and was expensive
- Goatein (Garden of Life) - no noticeable effect
- Primal Defense (Garden of Life) - no noticeable effect
- Deglycerized Licorice (DGL) - other people have reported this helping a lot
- Never tried acupuncture or traditional chinese medicine for it
- Never tried VSL #3 (wasn't yet available) - I did try this later on when I had the j-pouch and it helped
- Cassava/Arrowroot/Tapioca flour recipe (haven't tried this) - in a glass of lukewarm water mix 2 spoons of cassava or arrowroot or tapioca flour, 1-2 spoons of brown sugar and a dash of salt. Drink 3x a day.
- Codliver oil (haven't tried this) - 1 tablespoon/day
- Marijuana (where legal) - In California, UC is a valid diagnosis to obtain a medical marijuana card
- Update 2010/12: Trichuris trichiura (whipworm) NPR article
- Update 2011/04: 'Zonulin' appears to play a role in causing gut permeability which leads to autoimmune disease: http://somvweb.som.umaryland.edu/absolutenm/templates/?a=1445&z=5
- Update 2011/04: Hypnotherapy appears to help by relaxing patients: http://news.bbc.co.uk/2/hi/health/8572818.stm
Anemia
You will probably become anemic if you have bleeding ulcerative colitis for long enough. Iron pills worsened the diarrhea and gave me cramps. Here's some alternatives I used to get iron.- Take black strap molasses
- Eat red meat
- Cook in an cast iron skillet
- Take folic acid and vitamin C to aid iron absorption
Drugs / Medicine
- Calmoseptine (ointment) - This is over the counter ointment helps out a LOT when things get irritated down there
- Asacol / Mesalamine (NSAID) - this was the best NSAID I tried
- Colazol / Balsalazide (NSAID) - didn't help me
- TPN (total parenteral nutrition) - I had this when I was really emaciated and the hospital refused to let me stay any longer. You get to wear this backpack filled with IV supplement bags that connects to a PICC line. The nutrition bags have to be refridgerated and are pretty heavy for an emaciated person to be carrying around. This stuff made me pee A LOT and messed up my sugar levels but at least I didn't have to worry about losing more weight.
- suppositories (NSAID/steroid) - Not only was this inconvenient and humiliating but it seemed to irritate the bowels and increase urgency
- Prednisone (corticosteroid) - this drugs SUCKS but is the best way to keep inflammation down
- solumedrol (IV prednisone)
- 6 Mercaptopurine / 6-MP / Purinethol (antimetabolite) - potentially really bad long term side effects and didn't really help
- Metronidazole (antibiotic) - this stuff tastes horrible; try not to let it touch your tongue!
- Flagyl (IV metronidazole)
- Cyclosporine - had an allergic reaction to this
- Remicade - never tried it (wasn't yet approved for UC usage)
- Dilaudid / Hydromorphone - the best pain killer you can get; an IV dose of this is pure heaven
- Levsin / Hyoscyamine (sublingual painkiller) - oral pain killers normally take upwards of almost an hour to take effect; you can put this one under your tongue and it takes effect within minutes.
- Atavan / Lorazepam / Xanax / Alprazolam (relaxants)
- Fleet Phospho Soda - you'll have to take this for a colonoscopy; this stuff will make you almost throw up! To make it easier to swallow I used to suck on a popsicle before taking it to mask the taste.
- Immodium - This provided some temporary relief from going to the bathroom so often when things weren't really bad
- antidepressants - I tried almost all of them; none of them really worked (I had a damn good reason to be depressed!) and had strange side effects
Side effects of Prednisone
Doctors are likely to put you on prednisone at some point if you have colitis. Prednisone is a horrible drug to be on, especially on the higher doses (30mg and above). Usually I would be tapered from 60mg when I got out of the hospital. Here are some of the side effects I experienced:- inability to sleep
- nervousness
- irritability / mood changes
- confusion
- puffiness in my face
- slight jaundice
- increased urination
- night sweats
- acne
- mild blurriness in vision
- calcium depletion / osteoporosis
- depression (from adrenal suppression)
- If you stop taking prednisone without tapering the dose you can go into adrenal shock.
Notes
- During the colitis I would get bouts of lactose intolerance. When I became intolerant I would eliminate all dairy from my diet. When I wasn't intolerant I still had to watch dairy products for gas (which is really painful).
- Excessively greasy and fried foods caused problems After meals my blood sugar would sometimes bottom out for some reason making me real tired. I would eat a hard candy to get the levels back.
- Painkillers and sleeping pills would make me bleed more
- Painkillers with codeine in them would lessen the frequency of bowel movements
- The least irritating toilet paper I found was AngelSoft and Charmin
- It is VERY important to take time to relax; stress will exacerbate the colitis. I would set aside time every day to do Reiki to myself to relax. I later became a Reiki Master.
- Watch out for developing Toxic Megacolon
- Taking antibiotics coupled with hospital stays can cause you to get a C. Diff (Clostridium difficile) infection (which I got at one point)
- Invest in a toilet seat cover to make your bathroom stays more comfortable; you can get them at Target or Walmart
- Update 2011/08/15: The WellApps mobile app, GI Monitor can be used to track symptoms and other useful things
Colitis Information
Main PageWhat is Ulcerative Colitis
Ulcerative Colitis
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stopped all drugs....if you have not tried the goat kefir and yougart, you are killing yourself.....I had been hospitalized every year or two for 30 years.....now I feel like I'm cured!!!!
Dilaudid is great. It works well and from my research, has less risk of side effects/addiction than the other alternatives (like morphine). Watch out for doctors that don't want you to have it, though.
The biggest thing I've found is to steer clear of INSOLUBLE fiber. Soluble is good, INSOLUBLE is very very bad.
What sucks most about it is it's very different for each person. They say not to take NSAID anti-inflammatory pain relievers, but they work GREAT for me when I get flare ups.
"That which does not kill us makes us stronger" or it just makes you really, really weak until it kills you. Sorry, 22 years of this has brought me down a bit.
WHat are the simptoms?
Just got a juicer and I am trying Cabbage juice.
At the first symptoms don't waste time with "natural" remedies, go straight to an MD and get a prescription for a strong pharmaceutical anti-inflammatory like "Lialda". That will bring the flare under control in short order. Once things have calmed down you can make the transition to the natural remedies. Skip the yogart. Unless you can find one that hasn't been pasteurized it's worthless. Instead you can re-establish the intestinal flora with a good pro-biotic by "Jarrow". Next add 3 grams of the amino acid "Glutamine" to distilled water twice a day, stir it up and drink it down...it repairs the damaged tissue lining the entire GI. And finally, don't leave out DHA and the essential fatty acids including EPA. Best of luck to all who are living with this nightmare called Ulcerative Colitis (UC). You can beat it but will come back if you get careless.
Ara, sugar is my nemesis as well. In fact, sugar and coffee are the WORST combination period. Closely followed by too much Wheat. (in any form)
Elaine - I completely relate with being clear through certain times of the day and not others. I'm 28 now and have had UC since I was 23. I was undiagnosed and untreated for nearly 5 years. I just bled a bit and nothing more. Was when I became pregnant that I decided to finally go to the doc and get a colonoscopy bc I became much more symptomatic. (4 months pg at this point) I thought I had a Polyp or something, never even considered a disease, so it was 4 months pregnant on the table that I learned this. After, I was put on Asacaol but didn't take it because I had a hangup with taking drugs while I was growing a baby and for the most part I was ok. I caught C-diff in the hospital having my daughter and to be honest, it seems as if my body has never fully recovered from that. I'm a regular bleeder now (couple times daily) but I still don't experience diarrhea like most UC patients. I will just bleed a ton if I don't watch it and I do love my sugar. It's hard but I've switched everything to Blue Agave, cut out most caffeine and barely ever eat Wheat.. When I cheat though, it's like I fall utterly off the wagon, it's not a bite of something naughty, it's a bite .. followed immediately by binging on the 'anti-food'. Some psychological stuff going on there I suppose. I tend to be the worst in the morning, first thing then at night around 7pm. I have found a reason for this though.. Days that I eat only 3-4 times and NOT anything inbetween, I'm better. Days where I'm constantly eating little stuff all day long are the times my system seems to be overloaded. I can't 'pick', it's nit good for me, no matter how healthy what I'm picking at is.
Also, Marshmallow Root is great. The mucilage in it is healing to the intestinal lining while supporting the immune system.. which is a quandary to us for obvious reasons, but it seems to work fine with me. Oats in large amounts make me somewhat acidic (natural oats, stove cooked, plain w some Agave)but a 11/2 cup portion sits fine. I know it's not naturally good for my body however.
AVOCADOS people.. AVOCADOS!!! If you don't like them, try 'n try again. They are one of the most complete foods. Protein, Amino Acids, Vitamins & Minerals! They're great for when we're flaring and needing nutrients without anything caustic to our intestines. Just DON'T eat them with corn chips : ( I know I know.
I am taking Asacol now and it has never stopped the bleeding for me. The only thing that stops the bleeding is eating really really clean, like we said.. the equation is simple in theory.. no caffeine, sugar, 'scratchy foods', wheat products or 'skins'. (and for some, dairy) I do really well with rice (I like to mix in fresh cheese & whatever cooked or fresh veggies I want) 2% cottage cheese with whatever (dill, cucumber, pinch of sweetener, onion or fruits) and soups. Homemade soup has SAVED me so many times I'm learning. I keep some fresh made in the fridge weekly. The BEST for me from all angles has been my delicata squash soup. Roasted carrots, onions, garlic & delicata squash with thyme salt and pepper to taste.. blended with hand blender.. Voila! Instant, nutritious and easily digested food. Mix rice in for added sustenance.
Things that have helped me
-VSL #3
-Organic Foodbased Multivitamin
-Folic Acid (precautionary / protection)
-Cooking with a good Olive Oil, using it neat on anything I can
-Marshmallow Tea throughout the day
-Kefir (it is smooth, high in good fat and calories for when that matters)
-Exercise(when possible, Yoga, Spin)
I want to try the Glutamine & coffee substitute someone here mentioned. I tried Yerba Mate and while I LOVE the flavor, it just doesn't sit well with me. :( I also want to try Cabbage Juice, Goldenseal & Goat Milk Kefir.. We'll see.
First: Stop the diarrhea! Juice of 1/2 lemon..mix with 1/2 teaspoon baking soda..stir 'till foaming subsides then drink. Do this on rising and before retiring.
Second: Identify antagonistic foods and avoid. Your list is good first hand information.
Third: Restore and support the integrity of the immune system. Ulcerative Colitis is essentially an auto-immune illness which occurs when our own immune system, in the process of attacking undigested food within our gastrointestinal tract, attacks our own tissue lining that tract. By taking quality digestive aids with our meals we eliminate that danger. Completey digested food then provides the nourishment necessary for a healthy immune system.
At the heart of the whole issue is complete digestion and the nutritional benefits that go with it.
Hope this helps. Guy W. Sykora
Ive noticed for me that oranges/strawberries/oats/granola and anything with too much linoleic acid will bring about a flare. Search linoleic acid and ulcerative colitis on pubmed... theres a significant connection and then wiki linoleic acid to find out what fats to avoid. Any fats with a linoleic acid concentration of 15% or more might be too much. After following these guidelines, ive been symptom/pain free for quite some time....knock on wood.
And dont be afraid of the negative stigma with saturated fats; its baloney.
You all know what they are so I won't take you on that journey. Anyone out there having trouble coming off prednisone? If so, what are you now doing to stop your symptoms?
Deglycerized Licorice (DGL) and the Cassava / Tapioca / Arrowroot flour recipe. As well as refining yogurt to greek style yogurt recommended and recommending Ghee over butter.
* SeroVera - nobody has mentioned it, just ordered the expensive aloe vera substitute, anyone tried it?
* Boswelia Gel - Heard this brings remission quickly
* Vitamin E Enema - Can bring remission, difficult to take since Vit.E is think and won't go in easily !
For anyone that wants more help/advice - I found healingwell forum pretty good.
My child suffering. Recently diagnosed. Why is he fine all day and then has to get up all night long to go to the bathroom? Why does it hit at night? Just finished Asacol but, still tapering off Prednisone. Trying Vitamin E also. Don't want him on meds the rest of his life.
Note to Lisa: Contact me ... I had the same issue, the doctor double my dosage of Asacol and everything went back to normal
really drinking alot of water, bananna, cod liver oil, sardine,apple with skin peeled.
The most important factor is to study your body & know what suits you well
I was diagnosed three years ago and have been on three different medications and two rounds of steroids.
All of you have listed wonderfully helpful advice! Here is some of my own to add:
>coconut oil/coconut milk/coconut water -- I would be dead without these
>ditch vinegars, sugars, caffeine
>tulsi tea (and Indian herbal remedy)-- drink daily
>eliminate gluten, soy, and dairy
>smoothies made with Ultrainflamix (http://www.google.com/products/catalog?rls=com.microsoft:*&oe=UTF-8&startIndex=&startPage=1&q=ultrainflamx&um=1&ie=UTF-8&cid=4735647778654431781&sa=X&ei=RYOHTd7RFojEswbcu7mSAw&ved=0CDoQ8wIwAg#)
>SLEEP!!! Get adequate rest. Your body is exhausted and it isn't getting the resources it needs. So give it a break. Take cat naps on your lunch break.
Says the compound 'zonulin' plays a key role in causing permeability in the gut which leads to autoimmune diseases like UC.
Not only am I a UC patient but I also am a nurse for a colorectal surgeon...how ironic eh? Suffered through ALL the meds, which never did much, including Remicade, before I finally begged for surgery.
I used to do triathlons on a regular basis but have been unable to find my endurance since my surgery. I seem to get too tired too fast now and can barely run around the block! I'm trying to figure out what I need to get back into it...Experimentation...always experimenting with this disease!
There is no UC in my family history as far back as Great G-parents. I have read a medical article about smoking cessation causing increased possibility of UC and I stopped smoking approx. 2-3 years before my symptoms started. My GI doesnt think there is a link but I really do! It really sucks that I stopped smoking to get healthy and got more sick than I have ever been in my LIFE!!!
Anyway...thanks for your story! It makes us UC'ers feel more normal knowing there are others out there like us!! ;D
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1361287/
Jackie, it will be hard for your family to understand what you are going through if they haven't gone through something like this before. The medication could be contributing to your depression but having UC in general is just really depressing. But the depression makes going through it even worse, try to find something to be positive about or something to distract you from focusing on the illness.
The BIGGEST factor is what you eat, do not listen to the doctors that say it is not affected by your diet, that is total BS. No high fructose, hydrogenated or partially hydrog.oil. Wheat is a giant problem. If in a really bad flare, make sure you are not eating raw. Make your diet mostly soft, cooked veggies. Mashed carrot, potato,parsnips, celery,squash. Banana or pears. Soft steamed fish and chicken. No breads, grains, fried things. EV coconut oil, l-theanine. If you absolutely have to have it, a little soft cooked rice is okay. NO citrus juice or whole citrus fruit.until you are much more healed.DO not eat for a few hours before bedtime and I find it is much better to sleep somewhere that allows you to keep your head and shoulders elevated.
Give these things a try,do not overeat at all. a very tiny amount of sugar. No soda, sport drinks ect. Try iced chamomile tea instead.
Good luck to all.
Is no sign of any symptoms. Please feel free to post any questions and I will be more than happy to answer. Thanks
Yes a decent number of people have had success with acupuncture, I believe it highly depends on the individual practitioner on the results. If someone who is experiencing a lot of success with acupuncture would post here what exactly their acupuncturist is doing; others will know what to look for in a good acupuncturist :)
Thanks so much for your story - it's definitely helped provide much of the preliminary dietary guidance. I also live in the bay area and looking to change GI specialists (I'm currently being treated in Michigan where my parents live), so any referrals you have would be extremely welcomed!
Just give it two days, tell your boyfriend!!!!!!!!!!!!!!!!!I have done it all, from meds to dispare.It is a hard road living with this.
A glass of unsweetened cranberry juice after any food or drink (Ocean Spray does a light version that only has 5g per serve. Most others have 30g. Also a tsp Slippery Elm in plain acidophilus yoghurt (tastes like butterscotch instant pudding) and calendula tea. I have been doing the cranberry juice for 2 days and have already noticed an improvement.
I was Diagnosed with Colitis in 2008. Since then I have had 2 bad flares, one that caused me to be hospitalized for a week in 2009. I was in a severe flare for over almost 2 months causing me to lose an extreme amount of blood in which I had to get a blood transfusion. My GI Doc shut my colon down by feeding me through an IV for 5 days. After about a week my symptoms turned around and I started to get better after being on 60mg of Prednisone, Asacol, and Rowasa. For about a year I went into remission and decided to take myself off the drugs. I felt better than ever before and BOOM the horrible storm hits once again. About a month ago I noticed a change in my bowel habit, and extreme gas. I went to see my GI and he thought I might have had a bad bacteria in my stomach lining and gas so he put me on Prilosec. (I had been under his care the whole time with doc visits every 6 months) After two weeks symptoms began to worsen and I ended up having a colonoscopy that indicated I was in a moderate flare and my colon was so inflamed that the doc had to end my colonscopy because he didn't want to risk Proferation. Now i've been on prednisone for 3 weeks, taking Lialda, Rowasa and I haven't seen any signs of improvement. Today I purchased GLC Licorice and 15 billion probiotic. I hope that along with my medication these natural supplements will do me justice. I was doing so great and living a healthy life and BOOM! I don't know what to do as far as diet & lifestyle change because the only foods I've found to irritate me are salads, nuts and those high fibre foods. Everything else I eat seems to be ok. Trying to diet with this disease is very difficult for me because I don't know what hurts me until I eat it. i.e. the sloppy joe I ate the other night. TORE MY STOMACH UP! I also have noticed that mornings and sometimes at night are really severe with abdominal pain and diarrhea. From 10:00a-9:00pm i'm ok. WEIRD.. Thank you all for your comments and feedback as I know I am not along fighting this horrible disease!!!!!! Believe in HEALING!!!!!
No nuts or seeds
No caffeine
Very limited dairy 1-2x a week
No uncooked veggies
No corn, popped or otherwise
No fried foods of any kind
Meat is one of the hardest foods to digest, of the meats chicken and fish are easiest
Limit red meat 2x a week
No fruit skins or seeds
Limited alcohol!
Good things:
Apple sauce
Watermelon
Bananas
Cottage cheese
Canned peaches and pears
Wheat bread (without seed or hulls...they HURT!)
White bread
Butter
Jelly (no seeds)
Mac and cheese
Hot dogs (on occasion)
Scrambled eggs
Taco dip made w cream cheese, vegetarian refried beans, a little sour cream an 1/2 envelope of MILD taco seasoning...flour tortilla chips are ok for me...it's hard not to add olives and diced tomatoes (on my NO list along w pickles)
Chocolate is ok in moderation (like chocolate chip cookies, but not a whole Hershey bar)
I don't have trouble w peanut butter
SMALL MEALS MANY TIMES A DAY!
My colon is so scarred that it is featured in medical textbooks used in Omaha (Creighton)!
I'm famous from the inside out! :)
If I eat 5-6 small meals in the day, I feel much better . I know this is hard as we were programmed to eat meals 3x a day. But that just doesn't work for me...my family, God bless them, is very supportive in joining me on the 5-6 small meals a day journey...it makes them sad when Mommy is stuck on the potty!
I understand that the damage in my colon is so severe that this is what I have to do to preserve what is left! I do fall off the wagon, and my "hangover" is a flare. The forbidden food is never worth the flare!
Feel free to contact me for an understanding email ear and support. People without UC cannot possibly understand the pain, urgency, and sadness we face w this disease, try as they might.
I understand what you all are going through...and it sucks ASS! But think of the good we are doing for the toilet tissue industry!! LOL!
May your God bless you all! And those of you not into God, have splendid days!!
Thanks for providing this website! It lets us UC Warriors know that we are not alone!
Big hugs to you! :)
The only good part of this disease is the weight loss...at least I look good while I can't eat anything fun! Bahaha!
I have had pan colitis for over a decade and have tried everything from conventional to alternative treatment. Natural approaches have always been mre helpful.
I have to share will all of you, I have been following the SCD diet for a couple of months now and it is nothing short of a miracle. It does require complete compliance and NO cheating.
If you are sick enough, you can do this with ease. It is so easy after the first couple of weeks. I urge all of you to try this.
Best wishes to you! Hope you are able to achieve remission for a long time.
I would bet a large amount of money that you would go into remission if you would l;ook up the SCD Diet.
It is easier than it sounds, you can eat almost all veggies, fruits and meats. Works really well for approx 85% of people that will really follow the diet, does require complete compliance.
I was diagnose with UC a week ago, after almost a month with diarrhea, a 3 days stay in the hospital, and so many antibiotics that just made me sicker, one of those is Flagyl, this a really strong antibiotic and it will just make you feel worst..
I started Asacol HD the same day I got diagnose, and with in 48hrs there was no more blood. So far I'm better as days go by I'm on day 8 of Asacol HD, and even that the diarrhea is not gone, I feel overall 80% better, I only have one trip to the bathroom a day and no cramps. this medication is working very well for me, my GI did not combine it with anything else.
I need some advise from anyone that is kind enoght to answer me. I have been in a very strict diet since i got diagnose. I only eat avocado as veggie or fruit, turckey burgers, chicken burgers and fish (all home made, and nothing fried) I dont put any spice but sea salt, and I drink a lot of water with a bit of apple juice to give some taste.
All the list of food that Will listed above seem very tasty, and I would like to know which ones are safe to eat while having a flare? also I love sweets but I cut all sugars over 20 days ago because I found out it would make the diarrhea worst. Is there anything I can use to make my camomille tea a bit sweeter??
Thank you so much for this site, it's a relief to know that I'm not alone in this...:)
God bless all of you!
My wife has been diagnosed with UC since 2002. Right now I (and our 5 month old son) am sitting beside her bed in the hospital while she is experiencing her worst flare up ever. She experiences upwards of 20 almost pure blood BM's a day right now. She had been on 3 a day lialda and 1 a day canasa for quite some time until now. She is as most of you can guess on IV fluids and receiving prednizone and Morphine both by iv at regular intervals.
Tomorrow her specialist is going to discuss and try to start her on 6mp. My research on 6mp results in fear and anxiety in my own eyes. I am going to do the diet with her. It is so hard to watch her suffer like she is now. On top of this disease, missing her new born son every day is really taking its toll on her.
The back to back hospital stays (they actually sent her home a week ago) have been nothing but frustrating. She is so miserable and at wits end. Her current symptoms with treatment in the hospital include: 20+ BMs mostly blood, nausia, chills, slight burning in the esophagus (sign of Crohns?) , extreme urgency, no sleep, over all not feeling good and just not feeling right.
I totally agree with some of the comments above that non UC persons (this includes almost all medical staff she see's outside of the GI team) do not understand. I do not have UC, my wife does, and the pain, sickness, frustration and battle with depression that I am baring witness to is too great for anyone to have to go through. I thought I knew but I finally see this as the disease that it is. I feel for you all. I hope the diet truly helps and I look forward to helping her with it. We just need her to make it over this hurdle.
Please look at it as what you are able to eat, rather than what you can't..
This has given me my life back after so many years.
Please , jst give it a try.
I finally have energy, able to be part of the family.Also, not afraid to ride in the car, shop,camp even. thoght it wold never be my life again.
the information is so available online.
Good luck to all, you with the wife and small baby, plese feel free to contact me, taammyjea@aolcom..My worst time of my life was post baby, too hard and sad.
Tam
http://www.breakingtheviciouscycle.info/
Okay, here are just couple of links, there is a ton of information out there.
Regarding people that have had previous resections ect, I guess I am not an expert on the matter, however I do know that many people that suffer from chrons/colitis also have other symptoms such as arthritic disorders, general body ache, even serious things such as Ankylosing spondylitis . All of these disorders respond to the SCD diet, it is an anti inflammatory diet.Presumably, better health can be achieved. The very meds we are forced to take, also lead to a host of symptoms.
This does reqire a commitment, it took me 6 weeks to notice big bowel changes, however I did feel improvement in other ways from the first week. Some people will have dramatic change within a couple of days.
If I knew before, what I know now, I would have been spared so much pain.
Some days, I really just want a big bowl of mac and cheese, so NOT worth giving up the strength and energy I now have.
Good luck, if you decide to try this, it can't be a half hearted attempt. Think of all of the vegetables, fruit, meat and cheese you can eat, rather than the sugar, grains and starches you forfit.
This is full of really good healthy food, no, it is not atkins diet at all.(there is always a critic in the crowd,lol)
Has anyone tried Beano? I was thinking of trying it to see if it works ok & helps with some of the nice symptoms. ~ Thank You.
Thanks for above information. I have some suggestion try to take everyday 1 spoon of honey in morning with empty stomach and at night before go sleep. It really helpful those have ulcerative colitis.
A glimmer of hope. We were very afraid of Remicade however she received her first infusion yesterday. They had to stop at one point because her BP dropped but she came back and finished the infusion at 11pm last night about 10 hours after the initial start. The turn around has been impressive. The passing of blood has greatly reduced as well as the number of BMs so far today. It looks as though Remicade is her wonder drug. She want's to taper of the steroids now ASAP.
I think the docs waited too long to realize the steroids weren't working. She was first hospitalized on 10/16 and then given oral steroids and sent home on 10/18. She continued to get worse and I brought her back to the ER on 10/23. She was admitted and put on IV steroids. She continued to get worse. The docs admitted being baffled by the steroids not working. The Remicade process took about a week to process. The hospital was ready to give it but they had to make sure she could continue to receive it as an out paitent. She had her first infusion last night and the response has been great. When that was done, she then had to get the steroid which led to awake all night with pain. Less movements and less blood since the infusion.
She also had to be switched from Morphine to Dilauded because morphine was not doing the trick with her pain.
I will be getting my 3rd infusion next week. I take my last 20 mg Prednisone today and then 10 mg for a few days then done. Hurray. Steroids are horrid. I gained 20 lbs and went diabetic on them along with a really fast heart rate, insomnia, night sweats...... Morphine wasn't doing enough for me either. Although combining it with an antispasmodic called Levsin (Hyoscyamine) - the one that you dissolve under your tongue works the fastest - really helped. I think Will has it in his list above. Kinda wish they had switched me to Dilauded for pain as the morphine would wear off an hour before I could get more. I finally pitched a fit and made them up my dose. Seems like they are paranoid about people using controlled substances. Kinda angers me because the last thing I want to do is be a druggy when I am in so much pain. As if people like us want the added complications on top of what the steroids do to our bodies. But, on the same hand, you really must try to limit the opiates because they can contribute to Toxic Megacolon which you do not want. That's an emergency for sure and can lead to an emergency Colectomy surgery. See if she can get the Levsin (Hyoscyamine). It lasts for 6 hours. At least the ones I had did. She may find that it helps lengthen the time the pain stays away. I found that it complimented rather than replaced the pain meds until I was healed up more and the pain lessened. Then I would just take the Levsin (Hyoscyamine) by itself. I still pop a pain pill once in a blue moon if I eat something that doesn't agree and I get crampy.
Best of luck to you both. Hope you continue to see the improvements with the Remicade.
We feel her BP is too low for to long, she is getting IV fluids but her BP hasn't come up. The staff here at the moment does not seem concerned but we are border line about to activate their rapid response team because this just doesn't seem right.
Has anyone else experienced the numb and dull pain feeling after a Remicade infusion. (This is her first one)
Yay! I'm in remission! I had the longest flare of my 21 years w my UC. I pulled meat from my diet. (I sometimes eat tuna in tuna salad, and I will dip bread in meat gravy...so it's not like I'm a vegetarian! My mantra always was: meat's for eating, fur is for wearing. I am obviously not on the PETA board of directors) The meat-free change has REALLY helped. I do miss it, though...but I remind myself that I would rather be comfortable than eat risky foods.
I have HBP, so I'm on the lookout for low sodium cheeses...does anyone know of a great tasting brand? I live in Wisconsin. Thanks for your help. Wishing you all many tummy-trouble-free days! :) k8
My fiance is in the middle of her first big flare up. Doctor is going to call us next week to tell us that she has UC, Crohn's already ruled out. Where we are running into a problem, as it seems to be the case with many of you, is pain relief.
Doc perscribed Acetaminophen with codeine, but the Acetaminophen is causing her to vomit. Ibuprofen is minimally effective. Does anyone have some alternatives we can try? Looking into the peppermint. Thanks and keep up the good fight.
Many things on that list does not match for me. I am currently only on Asacol and Lactaid since I became Lactose intolerant.
Banana - NO WAY!
Pineapl juice - I drink almost a litter per day.
Orrange juice - If I drink a tea cup - I get bleeding in a 4-6 hours.
Rice - not good for me.
I can only dream watermelons (it is hard product even for healthy people)
It took me 2 years to determine what is good and bad for me :(
In one sentence you say you have a good diet, and in the other sentence you talk about eating sloppy joes.
You also make a statement "the only foods that seem to irritate me.."
Basically, this shows that you do not know what a good diet is, and you do not know how to determine and develop a good diet for yourself. Just watching "what seems to irritate you" is sooo not enough. Nutrition works in slow motion, do yourself a favor and read some books on nutrition for UC, on separation diet, etc.
Definitely sounds like UC symptoms. During my first flare, I was also having normal BMs, but accompanied by blood and mucus. Mine was restricted to the lower-left side so it was easily treated with rectal meds. I went into remission within a week. The last thing you want to do is wait to get treated and have the UC spread throughout the colon. I got off meds and am currently in the midst of a 7 month flare.
If the blood is fairly bright with your solid BM then your ulser(s) is/are probably closer to the rectum than the cecum and you might benefit from an enema or suppository during a flare.
As Christa stated, do not wait to get treated. A severe flare could put you in the hospital and through a very expensive ordeal.
My wife has had UC for 10+ years. Her worst flare of her life came 4 months after the birth of our son just this year. She was hospitalized for 3 weeks and is now on a Remicade regimen as well as received blood transfusion and iron infusions as a result of the blood loss. Previous to this last flare, her flares were basically what you describe and upping the doses of Lialda and Canasa usually quelled the flare.
I am not a doctor and you should ask your doctor about anything I suggested.
Do you mind if i put a link on my Facebook Group that helps people with Ulcerative colitis
It's Called ( Ulcerative Colitis Support Group Global)
http://www.facebook.com/groups/UCSGG/
Be great for The member to see and if anyone wants to see the group copy and paste the link i put
Thanks Jon
Matthew, doctors don't know everything; there obviously is a link to stress: http://www.webmd.com/ibd-crohns-disease/ulcerative-colitis/features/link-between-stress-ulcerative-colitis
Ultimately the only person responsible for your body is yourself, doctors can try to treat you but at the end of the day you have to live with the result and they don't
is hard to follow...but could be rewarding?
and what of turmric powder in hot milk....i am currently having that, been prescribed immunosuppresant azathioprine and prednisolone....dont wnt to take them......hoping for natural CURE not just treatment