Crohn's Disease & Ulcerative Colitis Support Group

I'm having trouble eating at the moment too. Everything hurts, juices, soups, everything. I'm finding that I can tolerate Ensure powder drink seems to sit ok. Just still waiting for the prednisone and imuran to kick in. Are bananas ok for you? Very ripe ones might be ok too. It's a case of trial and error i think :-/ The Ensure supplement at least provides some nutrients in the meantime...

Welcome to the wonderful world of UC where if you don't eat it hurts and if you do eat it hurts. It's great that your doc wants to keep you away from Prednisone. My marker over 20 years of living with colitis (I just had surgery to rid myself once and for all) was once I started bleeding, I gave in to taking pred, despite how much I despise that drug it does get the bleeding to stop and you don't want to wait so long that you end up hospitalized.

As far as things to eat-- I hear you and this is such a frustrating aspect of the disease. I was in a flare for over a year before I just had surgery and literally for the past 8 months my diet has consisted of bread and variations thereof, bananas, and avocado. (Bagel every morning with a little bit of margarine, pita chips for snacks, plain noodles, saltines). All still hurt and I had cramps, but things were noticeably worse (if possible?) when I strayed from those things. It is definitely a trial and error thing- some people on here swear by NOT eating bread. For me, it helped absorb the acid which mellowed out some of the gas cramps. Some people swear by going to a liquid diet- for me that was pure hell and made me feel worse. It really takes a lot of time and patience and experimenting. Many people on here will tell you a raw foods/juice diet works for them. My body will not tolerate anything other than banana and avocado when in a flare- if I eat even a well cooked carrot or a smoothie, I'm toast. Potatoes are a staple for some people, and for me that was like lighting a rocket even though they are low res and mild.

There are MANY different diets and things to try though- that is the good news. They are all a pain in the butt (no pun intended) but many of them work for different people and everyone is different. Some people are fanatical about diets that "cured" them- I say anything is worth a try but you shouldn't be spending a bunch of money to do any specific diet and you should know that there are periods of remission with UC, so anyone claiming to be "cured" should raise a red flag. Beware of anything asking you to buy anything- all these things can be done yourself and take discipline, but for many people have results.

Get some books on different types of UC diets. There are a TON out there and there is a ton of internet info as well. Your doc sounds like if he is staying away from pred, that he might be open to helping you in the nutritional dept. as well- maybe select one or two that sound good to you and bring them up with him on your next appointment.

As far as meds- Lialda did not work for me personally and actually gave me adverse effects. I would keep up the communication with your doc about the trouble you are having because it's easy to try to "wait out" a flare and all of a sudden you are past your time and laying in the hospital, twice as bad and wondering how it happened so fast. You may want to get a second opinion from another GI doc too, as well as getting tested for something called Celiac Disease- it's a blood test but the disease can mimic UC and often times docs don' t check.

For cramps, I used to keep a pillow in the bathroom and splint my stomach. I also slept with a pillow against my stomach. Also if you can get a microwaveable heat pack filled with rice and lavender (or similar)- those really help cramps too.

Keep an open mind and try to have patience as you learn how to adjust your lifestyle. You have definitely come to the right place to ask questions and find support.

Hi

I cured my UC following book by D.Klein..also few others..IT really works!!!
Read heated disscusion...yes 48 posts....particularly mine ,squasher and missallie....

http://www.dailystrength.org/c/Cro...

Kelsey, this is really fair and thoughtful advice.

I agree; keep talking to your doc. There's lots of meds to try, if one doesn't work, another may. There are also many diets you can try too. My doc's theory has been to start with the milder drugs first and then work up from there if needed. Lialda didn't work for me. I'm now on Imuran which I'm having great success with. Prior to Imuran, I was on Colazol for years, maintaining remission during that time.

If your blood counts are really low, they can do iron infusions, which I found helped me a great deal. I had such low energy with my last flare from the anemia; it was a chore just to sit up in bed some days, let along pull myself together to function at work. It takes a few weeks for infusion to kick in but the effects last a few months.

There is no cure for IBD; there is remission, which for some, can last years. It's different for everyone. It's a weird disease, that's for sure. Keep talking to your doc so he knows what's working for you and what's not and then you can figure out the next steps.

Kelsey - fabulous post. Thank you.
I agree with your statement about 'waiting things out'. That's exactly what I did, trying not to be a bother, trying to heal myself, and BAM, here I am. Communicating with the doctor is so important, and having patience and asking questions are key.
*hugs* to all.

Thank you all for your advice!!! I kind of figured a lot of what you said is what I should do, but just hearing it again from more experienced people helps. At this point I am feeling a little depressed, just because of a lack of being able to do normal things with friends, and thought it would just feel better to post what is going on, and it has made me feel better!!!

My mom has had Colitis since she was 19, so she has been an amazing help. She was hospitalized twice in college, and once when I was little, but has been in remission ever since. I just hope that one day I can get to that point, =).

I am going to keep talking to my doctor, and see if I can be tested for Celiac disease too, just to make sure. Narrow out a potentially allergy. I just really hope that I feel better soon!!! It is making my busy senior year a lot harder than it already is!!! Haha.

Again thank you all! I will definitely be a frequent visitor to the site!

Everyone is different, however some common threads emerge. Dairy is agressive on the gut. Sugar loves to ferment and cause trouble. Wheat for some is bad for some all grains are trouble. I'm fine with some bread but forget heavy cereals. High fat food, sure I love a cheesburger from time to time, but I to pay the price a day later.
Our usual american diet of refined food is hard to avoid.
Sometimes I just retreat to bananas and brown rice.

get the book self healing colitis and crohns by Dave Klein, like indi64 said. I have had UC for 9 years, and was having a terrible flair this summer. I was on prednisone and a very high dose of asacol. I had tried eliminating just about every food I could think of from my diet. Nothing helped until I got this book and followed the advice. It is a very strict diet, and difficult to stick to, but well worth the effort! I am off all meds (even meds for unrelated issues) and feel better now than I have in years.