I got a j-pouch in 2006 and I am having some complications, mostly erythema nodosum, I got 2 fistulas right after my surgery that haven't bothered me in a long time. I have some inflammation of the rectum but haven't had any symptoms show in my small intestine, just a few ulcers in my pouch. Anyway, they are saying I might have Crohn's. They never said for sure. Does anyone know about this?

I would get another opinion I was told after 2 yrs after Jpouch in 2006 that I may have crohns and I went to a Gi and they said there is not evidince they I do and my sureon says yes and teh Gi he sent me to says he is full of it .. So my point is to get it checked by a few people to confirm..

I wouldn't dare to assume you had your surgery at Mayo being in MN, however, if you aren't a patient there that would be my suggestion. Get a second opinion. They are #1 for colorectal in the world.
If you type in fistula in the find box you will come up with many threads of members who had these issues.There have been a number of cases of UC pattients who later after j pouch surgery were diagnosed with Crohn's. They are managed successfully with meds.This is becoming more common.

I had been diagnosed with UC at age 21...after takedown in June of 2007, I began experiencing RV fistula symptoms. They reversed the reconnection and placed the ileo back on again while I undergo Remicade treatments. Upon scoping me, my surgeon was baffled, as he now believed I had Crohn's instead, which just didn't make any sense. However, the two fistulas and problems with abcesses and the like seemed to indicate otherwise. He sent all my pathology to Cleveland for another opinion. They reviewed everything and feel that what I have is Indeterminate Colitis, not Crohn's. I suppose this is sort of good news, but we're still trying to fix the fistulas. One seems to be responding to the Remicade, while the other one will require surgical repair in April. As far as opinions go, I've heard that Mayo and Cleveland are the best places for a second opinion.

I was diagnosed with UC in 1989 and had my j-pouch surgeries in 1990. I thought I was cured! In 2000 I thought I was getting pouchitis and I got erethyma nodosum along with a couple of fistulas. That was the doctors big sign that I had Crohn's, because I don't think that you really get that with UC. I have been treated for Crohn's with Cipro, Imuran and Remicade since and been pretty healthy. It is definatley worth getting checked out!

I'm on cipro too and am starting now on Imuran. I'm also on the SCD diet, which helped immensely when I was diagnosed with UC but when I went off it things got really bad, hence the j-pouch surgery. Anyway, the interesting thing is, when I quit dairy and beef for about a week, my erythema lets up considerably. I have to keep eating dairy though because my diet is very limited (no grains or sugar, low fiber, etc) and without the dairy I lose weight. I am starting to wonder if I have MAP infection from dairy, otherwise known as mycobacteria avium paratuberculosis (they talk about this bacteria on the Crohn's website at mayoclinic.com) so I boil all my dairy before eating it.
http://www.liv.ac.uk/newsroom/press_releases/2007/12/crohns-disease.htm
Studies have shown that the bacteria is found in pretty much all people with Crohn's when they do a certain culture with the biopsy. This is the medicine they're working on to cure it:
http://www.giacondalimited.com/pages/products/myo_conda.html
anyway I thought it was interesting and hopeful.

..and also, I'm glad to hear you're feeling pretty well Lauren

Hi Kate- Have you tried soy milk? The plain soy milk is limited in sugar. Another thing to try is goat milk. Much easier on your system- it has smaller molecules, which makes sense because a baby goat is around 6-10 lbs (like a human baby) while calves weigh a LOT more. Plus goat milk doesn't have the MAP.

Also once I started eating organic meats, my tummy is a lot better. More expensive, but worth it!

Hi Kat, thanks for the advice.
I can't tolerate soy milk but I think the goat milk is a great idea. What's interesting is that I tried dairy and no dairy on and off for five weeks and the weeks that I had dairy my erythema nodosum swelled way up and the weeks I didn't have dairy it went way down. The first week I only ate goat yogurt and the swelling went down. So I'm going to go buy goat milk today. I must have either a cow dairy allergy or maybe it's MAP. I eat mostly organic fruits/veggies but I haven't tried the organic meat yet. It's so expensive! ha ha