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 Food

avocado
banana
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
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)
zuccini

OK Food

celery
cheese - 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 Avoid

apple
apple 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

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
Never tried acupuncture or traditional chinese medicine for it
Never tried VSL #3 (not yet available) - I did try this later on when I had the j-pouch and it helped

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

Colitis Information

Main Page
What is Ulcerative Colitis
Ulcerative Colitis
Ileostomy
J-Pouch

Support

I live in the San Francisco Bay area. If you are interested in meeting in person or talking about UC, please email me at colitis@willperone.net or contact me via AIM as megamanse81, YahooIM as willperone or gmail chat as will.perone.

36 Comments
Lee wish you all the best. Your tips are definitely very helpful! Take care
Felicia Ditto - I feel for you, your comments are very helpful, too! Thank you for doing this.
AE Thank you soooo much!!!
Lisa very helpful, thanks!
George Thank you for your help, wish you well
George Singh I have had a flare up since being given iron tablets and also drinking orange juice daily. I have stopped both to bring the flare up under control, lesson learnt, I do not eat red meat as the doc said eat white meat but i guess will have to try the other way round temporary, thanks once again.
this is a really helpful list awesome notes thanks a lot
Relebogile Mogale Thank you for this, I have been so confused in terms of what to eat. I hope this will help me, I am currently awaiting final results for biopsy done during Colonoscopy but on meselazine "pestana 500gm" already, taking 2 tablets twice daily. All the best to you and God Bless!
Your Name Very helpful list.I am a vegetarian so the choice for iron replenishment is limited.Doctor has advised me to keep away from milk & dairy products.what to eat?
Yash Bhatt I am a vegetarian and have a limited choice for iron replenishment.Notes are very helpful. Doctor has advised to keep away from milk and dairy products. I dont know what to eat.pl. advise & help.
Yash Bhatt Recently I was reading article published by Australian scientist (doctor/nutritionist - i dont rememeber.)where they have mentioned that phospholipids helps in strenthening the mucus lining of the intestines.Whether butter milk has more of the phospholipids in it? Pl.reply.
Suzi After many web searches I found you, and I am grateful for everything you posted! Thank you for your list of foods. I was stumped on what I can eat, therefore, I wasn't eating because of fear of more diarrhea. Thanks again!
Anne I feel for you I am trying to avoid surgery for 2 years now, and I have done all that you have done! Its an awful disease but "that which does not kill us makes us stronger." God Bless you as I have been blessed. This illness has taught me not to be petty and love is what is most important. Good luck with all your endeavors.
Jill 30 years of the quacks pumping me full of their killer drugs.........started goat milk kefir and yougart 3 months ago....feel like I did when I was 18!!! 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!!!!
Mike I was diagnosed with U.C. last year, though I've been dealing with the worst of it for about 2 years now. This was a good list, and I'm glad to see other people that were able to observe and learn their own patterns. Do keep in mind though (to everyone else) that the things people can eat with this disease vary a bit. For example, for me, I know that "honey crunch & oats, oats & honey granola" in the cereal category for me is instant suicide. 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.
Chris I have to say I could never be a vegetarian while having UC. When it gets really bad I eat large amounts of beef, and I guess it's the high nutrient content but things seem to get better. You just can't eat enough vegetables to get that kind of nutrition, because when you try, that amount of healthy vegetables will exacerbate the UC. What's good for normal people can be VERY bad for UC sufferers. I've had UC since I was 16, I'm now 38 and still dealing with it. 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.
Your Name Thanks for the info. I have had UC for 2 years, 2 hospital stays, one recent, been home for a week. Started L-Glutamine and it has already made a difference. Food varies for me, but vinegar is a problem every time.
Will Vinegar is very acidic, perhaps you are very sensitive to acidity.
Miriam Thank you for this list. I have just been diagnosed with UC. The last two months have been a nightmare.I was very confused on what other foods I can try. God Bless you.
Ara Hi - interesting site. 20 years with UC myself. Interesting to see that painkillers make you bleed too. Paracetomol always makes me bleed, even when I'm not in an obvious flare but will the doctors believe me on this..? No! For me, about 75% of your food list works but I too could not touch granola - whereas oatmeal is easier. As for apples, pressed juice or stewed without the skin is good for me. I'm not much good with beef. Some nuts are OK if ground. Have recently discovered that coconut slows the digestive tract nicely. Sugary products seem to be the biggest evil for me - and boy is it hard to give them up! By the way, for 20 years my docs in the UK have told me that diet and colitis have no relation, I think if I'd listened to them I wouldn't have my colon anymore. Sure, when I'm well I can eat anything but, in a flare, carrying on that way would kill me.
Mike Thanks for the info Will. I've had UC since 1989 and was one of the first people to take asacol and mesalamine when they were new. I gave up eating anything deep friend about 9 years ago and haven't looked back. I'm okay with most other things but had a flare up unexpectedly today. The only thing I can put my finger on is drinking lots of the fresh sqeezed grapefruit from our tree in the back yard. I'd never drank from it before (and its tasty) but I'm not sure if that's a connection. :)
Gail Tks for the food list. I've had UC for 22 years. I'm back on prednisone and waiting for it all to subside. I'm considering the Renicade avenue. I of course have been on and still am doing the mesalamine group and enemias. Anyone with experience? Your food list was helpful. I find that foods i like are good for my UC and foods I'm starting to push away from are on your "no" list. Take care everyone!
scott I have been taking goldenseal with my Lialda.....it seems to be taking away all symptoms ??
cassie How do you know if you have this disease? WHat are the simptoms?
scott wait there back...damn !
elaine had uc for 13 yrs now from 31 to 43. i've been on asacol (which really never seemed to do a thing), prednisone, which did always but too bad you can't stay on that forever. xifaxan - helped alot. entocort - not much at all. my docs don't seem to care that i've been bleeding for a year straight multiple times daily. with me its real bad morning and i'm clear from 11am to about 9pm. does anyone else find that? i thought florastor was a miracle cure till i ate crabs one night. i don't know, maybe the crabs had some kind of bacteria in them to hurt me. i've been anemic for 12 years hemogl is 8. but never feel tired its wierd. and look so young probably from that! lol - very frustrated. i hate meds they're bad for the body.
Will Things always got worse at night with me too. Stress and diet are the two things that can make things go bad with UC real quick so you have to really be vigilant about that.
Brad I found that I could not eat wheat gluten. If I stay away from wheat, oats and barely I am fine. So no more beer and pizza for me. I have heard that the biggest UC triggers are wheat, soy, dairy, and corn. Just got a juicer and I am trying Cabbage juice.
abhi THanx
Guy Sykora Dear Friend...Bless your heart for sharing your learning experience with all the UC sufferers including myself. UC is a harsh and unforgiving teacher. So I know you speak from first hand knowledge. I'm now in my third "flare-up" and each and every one had it's beginning in too much sugar/coffee. The sugar is the most inflammatory substance you can ingest. While coffee is the worst acidifier you can drink. 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.
Will Thanks for the post, glutamine and the Jarrow brand probiotics are good tips indeed. Yea coffee+sugar has been out of the question for me ever since the UC even after the Jpouch, though there is a new product called Teeccino that is a natural coffee replacement that I drink now. It's actually alkaline and contains lots of b vitamins/potassium etc to give you energy and you can brew it like normal coffee. It does taste chocolatey though which is an interesting difference.
Tiffany Date: 11-18-09 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.
Tiffany AS I understand it ~ Not all Omega's (EFA's) are created equal. One stimulates the Immune system, one inhibits it and one is neutral having no effect either way. In effect, it makes sense to me that if we ingest the EFA's that are Immuno Stimulanting, we'd be undermining Prednisone for those of us who are on it (being the Immuno-Suppressant that it is) and the possible danger of ingesting EFA's that are Immuno Stimulating is that our bodies end up attacking our intestinal lining even more. It's an F'en slippery slope we're on. How to keep our Immune System's strong without attacking ourselves is the real question?!
Guy Sykora Dear Friend; You are a true humanitarian to be sharing your knowledge and concerns with others. Although ulcerative colitis symptoms are collectively the same among individuals the remedies are relevent to each of of those individuals particular body chemistry and genetic disposition. What I'm finally beginning to understand about this condition is that it can be managed if not cured altogether. 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
Lindalee23 I have Crohn's, colitis and a form of spondylitic arthritis that accompanies them. The ONLY thing that has helped me is to be on the 'IBS Low-Starch' diet by Carol Sinclair. It has literally saved my life. I tried all the supplements and medications and every drink and theory out there and NOTHING helped until I went on this diet. It meant the difference between day and night. I truly do not think I would be here if not for this diet. Give it a try, anyone that is at wits end like I was. Good Luck! L.L.
Arin Im surprised no one has mentioned turmeric/curcumin. Buy it from any middle eastern/indian store in powder form and mix as much of it as possible with water. Its not palatable, but its effect is overnight and far superior to Lialda. 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.