Every single day for the 16 years I have had the pouch.  I went from UC to pouchitis with 6 months of ileostomy in between but still wouldn't go back to the ileostomy.  Pouchitis is normally better than the UC was.  The UC was going to kill me.

2.5 years with jpouch and I believe this is my 1st instance of pouchitis. I could not have been able to tell the difference between pouchitis and a flare until a week ago, but I had a  a jpouch vet explain it to me. No matter what I ate, I was pooping all the time (rather than most of the time) and perianal pain that was not normal (like, thinking I needed to go to the ER soon pain.) She, like me, follows SCDiet and that reduces symptoms and the onset of pouchitis. But when diet doesn't work, this pouchitis is a total downward spiral. On day 5 of Flagyl, and I felt better after 12 hrs! SO tired and poopy before the meds! I am not too fond of them either but it is too risky to have untreated pouchitis. Cipro has hard core side effects. Oregano oil and probiotics help your body with the antibiotics.

 

 

I HAVE HAD POUCHITIS FROM DAY ONE I THINK..i am antibiotic dependent..without them i could not function because the pouchitis would get so bad in no time with severe irritation that you shutter in pain..there is no living with it..i also have to rotate the antibiotics because they stop working anywhere from 2 weeks to one month..i take probiotics i avoid excess sugar do not eat starches both known to feed bad bacteria..but it still goes on...trying to figure it out is a mystery..only thing consistent for me is inconsistency with my pouch..

I've had pouchitis since my TD in 2006. GI's have tried everything but sooner or later the antibiotics stop working. I've been on VSL 3 DS for may years and now Dr say there's nothing left to do other than an ileostomy. So as I wait for my referrals to surgeon's I'm doing research to see if I missed something. Really don't want to revert back to an ileostomy.

I get frequent pouchitis and was prescribed Ciprofloxacin on and off for years. My consultant assured me that I could carry on taking it whenever I needed to. It would work like magic and I had few side effects. However, after several years I was diagnosed with C.Difficile and ended up in hospital seriously ill. I was then told this was due to overuse of this antibiotic and I am not able to take it anymore. Now I take a double dose of VSL#3 every day and suffer from pouchitis much less. When I do have an episode I am prescribed Metronidazole or Vancomycin. These make me feel really bad and I suffer from most unpleasant side effects. I really wish I could carry on taking Cipro.

 

Mandate, I've tried eliminating a few things like milk (which I drank a lot) and cut way back on sugar but didn't see much of a difference. I'm still off the milk.
Back when I was diagnosed with UC in 1995 I went on a very strict diet and had no relief so gave up on that also.

Mandarrr, I've tried eliminating a few things like milk (which I drank a lot) and cut way back on sugar but didn't see much of a difference. I'm still off the milk.
Back when I was diagnosed with UC in 1995 I went on a very strict diet and had no relief so gave up on that also.

i think its fair to say with gut issues we have the problems are more complex than just diet..but diet probably is one component among many..

I have also been fortunate that in the 3 years I've had mine I have never had pouchitis.  Not sure even what the symptons would be.  But I cannot eat alot at once and I try to eat what doesn't bother me.  It's a learning process.