I never had chronic pouchitis but I definitely know that stress is definitely a indicator in J-pouchers. She should probably do stress reliever exercises. One thing I like to do is make a list of the things that I am grateful for and it brightens me up and reduces my stress. Another thing she can do is exercise, that definitely increases happy cells.

As for eating: Oatmeal has great prebiotics and probiotics- that is great for us and so is yogurt.

For medication: Probiotics pills are great And biologics are great for preventing pouchitis like Remicade, that is an infusion but it is great therapy for pouchitis, I would mention that to the doctor.

Thank you for the great insight!  

@Paul Schwartz posted:

Thank you for the great insight!  

You are welcome

@Paul Schwartz posted:

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!

I have chronic  pouches.  Besides getting it under control quickly with meds. ( Flagyl,  and cipro) i found diet is huge, the remaining colon flairs up and seems like diet to maintain is best for me.

Glad you have ways to keep it under control.   Thank you for responding,   I hope you stay well!

@Paul Schwartz posted:

Glad you have ways to keep it under control.   Thank you for responding,   I hope you stay well!

You too! Definitely ask the doctor about Remicade and see what he says. It could definitely be a great option if things do not clear up.