Other things that can help with chronic, "antibiotic refractory" pouchitis are 1) aggressive probiotic treatment, like VSL #3 DS @ 4 packets/day, 2) avoiding NSAIDS like Advil or Motrin, 3) a low, or even extremely low carbohydrate diet, 4) combination antibiotic treatment, 5) antibiotic sensitivity testing.

If I were in your shoes I'd stop eating carbohydrates for a few weeks, period. It's a challenging diet, but not as challenging as the symptoms you're describing. If the no-carb diet helps, you can experiment with relaxing it (e.g. a low FODMAP diet) and seeing if you stay okay - but you have to get okay first! I'd also add a probiotic, preferably a high-dose one like VSL - but if you change two things at once it's harder to figure out what did the trick.

Good luck!

I have never tired to stay away from CARBS, i know diet is a huge part of dealing with my disease but i didnt think that carbs would play such a big part. I tried Align but not VSL3 i was always under the understanding that probiotics should only be taken when i am not presenting with symptoms attributed to pouchitis. Thanks for your advice its comforting to know that people are going through the same things that i am.

Try not to eat any sugar, fruit, wheat, red meat. Take heaps of VSL#3 (if you can afford it, like 4 a day)

No carbs, no surgery
Resistant starches
Homemade 24 hour yogurt and homemade kefir

Also check out IBD diet from University of Mass
UMASSMED.EDU

(Check out my signature, I have been on every drug and this actually works)

Ah yes, living life with constant pouchitis. I did that for 12 years, thinking that it was normal. Suckah!

I went on the following and have been ssssllllooowwwwlllyyy weaning off of things still.

On 9/26/13, started on:
500 mg Cipro per day
250 Flagyl 3/week
Entocort 9 mg, 3x/week
Florastor probiotic
Trader joes multi probiotic
Cymbalta 40 mg per day
Celexa 40 mg per day

Today:
Cipro same
Flagyl 250, 2/week
Entocort 3 mg, once/week
Probiotics are the same
Antidepressants are the same

This has been LIFE ALTERING!!!!
I don't crap all over anymore! Saturday night, I slept from 10PM to 4:30AM, got up to potty, then slept till 9!!! No leakage!!!!!

Life is good. And let me tell you that, back in September, I'd consulted with docs and ostomy nurses to lose the pouch. This was my doc's last attempt to fix things pharmaceutically.

Hang in there and try to get more help. You do NOT have to live with this!!!!

Thank you for your recommendations. I have just started taking endocort again. It's helping but there is still a ways to go. I have tried to stop carb intake as well. It's not easy but I am trying. I have never tried antidepressants and don't think I need them right now but I am open to anything that can help.

seriously you have gotten good advise here to make the elimination of carbs more definitive get a hold of ..breaking the vicious cycle..elaine gottshall..its detailed on what carbs you can or cannot eat and just about everything else..its better having a clear guide..if you follow it you can order some treats from..digestive wellness.com to get you over the lac of carbs..you need to start somewhere with clear guidance ..this is a good start..if you have some success which should be clear in a month or so you can tweak it ...you can in meantime continue drugs and if it works slowly remove drugs..i was on diet a good few months before i gave up my antibiotic which i could never do in 7 years of pouchitis or later determined to be sibo .. but diets are working for folks with above,ibd,colitis ips and many other digestive issues..here is definitely something to removing foods that feed bacteria(bad)..