I have my J Pouch for one year. Am taking large amounts of antibiotic for pouchitis and as soon as I start to back off the antibiotic from 2 times a day to 1 time - I begin to have cramping - urges to go more often - and lower back pain. Does any else experience this?

yes...same thing with me and I am on augmentin and I am four months since takedown and on it all the time. It is chronic pouchitis and I really think if you develop it early after take down it just stays with you. I really do not believe the surgeons when they tell you it should get better in time. Some people rarely, if ever, develop pouchitis with their pouch and others suffer continuously. They need a better method, if there is one, of testing people before the surgery as to who may be more prone to chronic pouchitis so they can let people know of the real long term complications that can occur if they may fall into the category.

I have taken 1000 mg cipro and 1000 mg of flagyl daily, in rotation with other antibiotics, for 16 years. Unable to get off them but I also tolerate them with no side effects.

I think you'll find that the same thing happens to anyone with chronic pouchitis. Have you had a pouchoscopy since takedown? Or has your GI suggested you may have chronic pouchitis?

quote:

They need a better method, if there is one, of testing people before the surgery as to who may be more prone to chronic pouchitis so they can let people know of the real long term complications that can occur if they may fall into the category.

It's unknown who is more prone and no surgeon is going to tell anyone anything other than pouchitis/chronic pouchitis is a risk of the surgery. I have dealt with pouchitis for 16 years, mostly successfully treating it with antibiotics, and I would definitely have the surgery again with no hesitation whatsoever because my quality of life is much better with the chronic pouchitis than it was with UC. I also do not have to worry about colon cancer and ending up like the unfortunate Tony Snow. For me it was a no brainer decision and going in I knew what the risks were.

I think kjeane is spot on about the need for developing a better method to be able to determine a patient's likelihood of developing chronic pouchitis before they undergo surgery. Of course, this ties in with the idea that there are probably many subsets of UC and Crohn's that have not yet been identified.

I've been on Cipro for going on three months now and can't get off. I tried Flagyl first, but it did nothing for me and the Cipro is working great.

I'm like DJBHusky, my quality of life with pouchitis is still much better than UC. I knew full well going into surgery that pouchitis was a risk. I do not regret my decision for surgery at all. I think we are far from distinguishing who will have chronic pouchitis since the doctors can't even come up with a precise course of action on how to treat it yet.

I've been doing the Cipro thing for about a year or so now. I also started with Flagyl and Cipro but I don't tolerate the Flagyl well. It seems that Cipro keeps teh worst of the pouchitis away as long as the dose is high enough. As soon as I dropped it to half dose, the pouchitis came back the urgency, pain and frequency all increased. Problem is that when I put the Cipro back up it wasn't as effective as the last time and now they say my pouch has to come out. So I guess after 10 years of visiting this site opn and off I'll have to switch back to the Ostomy boards.

I think what I'm trying to say is ... if you're on Cipro and its working and you don't have side effects... don't stop.

Martin,Can't you try some other meds? Possibly try other antibiotics or UC drugs like pentasa, sulfasalazine or others? I am not sure I would throw in the towel so fast without alternating to some other meds first if you have not already.

I know what you mean by trying the other stuff but the medics say that if those things didn't work on the UC in the first place - and believe me I tried all of them back then, there's not much chance they would work now. The only one that's not been tried is Methatrexate (I think that's how you spell it) and if that's anything like Azothiaprine then I'd rather have the surgery!
But thanks for the suggestions.