I’m actually here looking for info for my daughter, she had the j pouch surgery 19 years ago, within the last year she is having repeat flare ups and recently took antibiotics for 2 weeks and was fine an additional 2 weeks but recently started a new flare up. Seeing a new Colon rectol surgeon. Praying there are more options to extend no pouchitis . She is under a lot of stress and going thru a divorce....was in great shape and gained some weight and not eating great. Has anybody else dealt with chronic pouchitis? Does this mean she may need a pouch removal? Worried dad....ty
Paul, a single recurrence of pouchitis may not be chronic pouchitis. Sometimes a more aggressive course of antibiotics, perhaps Cipro + Flagyl, perhaps a month of treatment, handles it. A high dose probiotic, like Visbiome Extra Strength or VSL #3 DS, tends to reduce the frequency of pouchitis - this kept me from needing antibiotics for about a year, and I’m still on a maximal dose. Even if it does turn out to be chronic pouchitis there are a variety of antibiotics that can treat it, and many folks do quite well for a long time on those (rotating among several, if possible). I’ve been on antibiotics for about 12 years with very good results, and others have been on them considerably longer. Finally, if the antibiotics are unsuccessful there are a variety of biologic medications that can manage chronic pouchitis quite effectively. There are lots of effective options available before it’s time to consider pouch removal.
A knowledgeable gastroenterologist may be better suited to this than a surgeon. Some surgeons are great at this, especially if it’s someone they operated on, but this is more often in a gastroenterologist’s wheelhouse (if he knows much about J-pouches).
Good luck!
