How far along post takedown are you? I had major issues. It turned out I had cdiff. Once I got that cleared up life has been better. I also got on a medication called hyomax. It has made my life much better.

Lionel, you might have pouchitis, but you haven't given us enough to go on. In addition to time since takedown, can you tell us what you've tried?

Hi Scott...don't know what "take down" is but I presume it is when I had the J-pouch inserted. I have had many tests for c-diff...all negative. Also had pouchitis tests but that didn't pan out either. I have tried many things like Lomotil, Tylenol, also Calmoseptine, Preparation-H, Vaseline, etc etc but nothing has worked. Never heard of Hyomax...but am willing to try anything. Have also tried Chinese herbal meds like mainly enzyme stuff. All the things that supposedly cause constipation never seem to work for me...Lionel. 

The takedown is your final surgery, when they connect all the plumbing. How long has it all been since you had your final surgery? I want to let you know I've had all these problems and eventually it does get fixed. Its only a matter of time and figuring out the root causes. There was a time I never thought I could go in public because of similar issues. I've had years of surgeries and complications but today I am living a good life. It does get better, hang in there.

Hi...I forget to mention it has been about 10 years or more since I had the J-Pouch inserted. .My main discomfort other than the incontinence problem is butt burning from eating or drinking foods that have a high content of acid or spices, like fruit juices or curries etc. It seems that some of the stuff "leaks" and that causes major butt burning in the anal area.....Lionel

 

Lionel,
Have you been in touch with any major hospitals? Everything turned around for me once I left Grand Rapid, MI (my home town) and got a referral to the Cleveland Clinic. Even before that I was at the University of Chicago but they did nothing like what Cleveland did. The staff places such as Cleveland Clinic, Mayo Clinic, etc have are second to none. It was well worth the drive, flight, time off of work, $ and hassle. I highly recommend you talk to your GI about getting into a hospital that specializes in j-pouches

I should mention that I have had some success in using COMFORTS BABY WIPES. I put one between my "cheeks" before I go for a walk and it seems to help the stool incontinence a lot. I know this may sound gross but this is one of the very few things that have given me some comfort while exercising, or working out.

There's no perfect test for pouchitis. I would try a course of Cipro to see if it helps.