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Hello. I had my surgeries in 2001 for UC.

Did anyone else have pouchitis from the time of surgery and for several years afterward, and then the pouchitis cleared up all on its own? Because that is what my doctor thinks happened to me. (I recently moved so I have only seen him once, he's saying this based on symptoms described.)

It actually comes with its own set of problems. Nothing that I have learned about my digestive system applies anymore. I apparently had pouchitis for 12 years and had everything down pat. Now I don't know what to eat, everything is so random and different and I really don't know what to do. It is nice that I don't have to take meds for it anymore (was taking 2 Colestid and 4-6 immodium a day for 12 years), but now I don't have a clue how to deal with the sudden gas and constipation, which seem to be completely random. I don't know if my system is still changing or what but in the meantime this is painful. I have tried different things over the past year but nothing is consistent and every failure is just a pain (literally).

I am hoping someone else has had this happen and has some tips.

Thank you for any and all replies.
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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 Smiler
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.

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