I would suspect that you did not have pouchitis for 12 years, but something else, since pouchitis does not cure itself. Cholestid and Imodium does not treat pouchitis, just functional issues of diarrhea. So, why did you stop these meds?

I have been taking Imodium for nearly 19 years. While I have been able to reduce my dose, I have not been able to eliminate it, otherwise my frequency is too high. I have had intermittent pouchitis, but not continuous.

If you want to try to control your function by diet alone start by reducing all carbohydrates to a minimum, and try to eliminate all grains and sugars. It is undigested carbs that cause gas. Once you have eliminated enough to improve your function, you can experiment with adding in some things, one at a time, but always keep the portions on the small side.

It is possible that you have small intestine bacterial overgrowth (SIBO) and pouchitis treatment of antibiotics helps get it under control (same symptoms as pouchitis without the inflamed pouch). Low carb diet and symptomatic treatment help with maintenance. Some people can regulate with probiotics, but it is not consistent in regard to what probiotics work.

Jan

Hi Jan, thanks for the answer.

About a year ago I started getting constipation out of nowhere, which had never once happened since my surgery. It became a fairly common thing, so I reduced the immodium by one pill...and then another...and then another...to zero immodium. This process took about 10 months. It helped but didn't stop the problem so I cut one Colestid, and finally the other, over about the past 2 months. Still didn't stop the problem but they weren't helping either. [Every step of this I did reluctantly, because during times when I have been forced to lower doses (poor travel planning, insurance problems) it has always been okay for a day or 2 but then bam- I would be sick for a week. That didn't happen at all over the past year of lowering doses.] I want more frequency at this point.

I had gone to one doctor before cutting anything, she checked for obstructions and then prescribed a muscle relaxer. Seven months later (at 2 Colestid and 1/2 an immodium) I went to the new doctor, who decided pouchitis cured itself and left it at that. It did sound odd when he said it, since I was never ever diagnosed with pouchitis.