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Hey folks,

I wanted to reach out to see what success there has been dealing with treating chronic pouchitis. Right now, my doctor has given me the option to either use flagyl on a rotating on/off schedule as needed to control pouchitis or to simply remain on flagyl indefinitely. Cipro does not work for me and I would prefer not to stay on flagyl indefinitely, however this last time I was only able to stay off flagyl for about a month before symptoms returned.

I wanted to see if anyone has seen success using a different approach to treating their chronic pouchitis. 

Thanks everyone.

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Echoing Pouchlogic’s suggestion that a high probiotic dose can sometimes help. Though I’m on full-time antibiotics now, VSL #3 helped me delay that for a year. I still take a very high dose (4 double strength packets daily), and I think it still helps.

Some folks have also had good luck with a *very* low carbohydrate diet. It doesn’t work quickly, and it can be hard to stick with, but it’s probably worth a try for you.

I am currently on the biologic Entyvio.  It has helped tremendously with chronic pouchitis flares. I'm also on Imuran and budesonoide. 

Another thing I do is watch the sugar.  I haven't given it up totally, but have decreased the amount I eat.  When I OD on sugar, I'm asking for pouchitis. (No more waffle cones for me when on vacation. So sad!) I'm also trying to cut down on the amount of fruit I eat, since it affects blood sugar.

Thank you for all suggestions.

Question about VSL#3. I tried it a few years ago for a short period. I stopped because it was super expensive and I didn’t see any changes (but I only took for a short period). Has the price became more reasonable or is it still very expensive? Also, how long did you take it before you noticed improvement?

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