what % of pouchers get chronic pouchitis?

This is a potentially misleading question. I have had chronic pouchitis for 17 years and despite bumps in the road, the pouchitis has been treatable and my quality of life very good. I have worked full time as an attorney all 20 years I have had the J Pouch, 17 of which have been spent battling pouchitis.

The question you should be asking is what % have chronic untreatable pouchitis. Because if it is chronic, and its also untreatable, you are not likely to hang on to the pouch for 20 years as I have.

I think its also an very valid question to ask what percentage get chronic "antibiotic dependant" pouchitis. As many people do not want to be forced to take antibiotics indefinitely due to other ramifications on their health.

yes, that is what i meant... chronic 'antibiotic dependent' pouchitis. like maybe some other people i cannot take antibiotics long term, they lose effectiveness on me and i get reactions.

I'm very impressed u have been able to have successful career and manage CP for 17 years. i think there are others that have also managed well with chronic pouchitis.

me, personally i would not do well, because my body type and sensitivity.

Well, on the one hand it may seem impressive to have kept pouchitis at bay for 17 years, but it's not as though I am happy or gleeful having to take antibiotics and anti-inflammatory meds continuously. So far there has been no visible toll taken on my body (with the exception of a bad yeast infection in 2010 which I believe was caused by not rotating antibiotics in a timely manner), but I worry about the not so visible toll being taken on my liver. I have been told that I am the "Guinea Pig" for the experiment of long term antibiotic usage. It's not exactly like I signed up for the experiment. I am sort of an unwitting participant.

I was informed by my surgeon prior to surgery that it was very rare (<1%) that I would have chronic pouchitis. He has been operating for probably 25 years and had never had a patient with chronic pouchitis...until me apparently. However, from all of the cases I read on this site, I think that number is far from the truth. I also think that surgeons falsely assume that all their patients are fine afterwards since after a few weeks, they don't really want to see you anymore. I was referred to a GI, which was the right thing to do, but my point it that the surgeons don't deal with chronic pouchitis and probably don't realize it's happening more often than they think.

This question comes up every now and then but you have to consider the group of people who will be coming to this website. Most people who have a j-pouch and live out their lives merrily, won't be coming here.

As for me, I got my j-pouch in 1995 and have had chronic refractory pouchitis pretty much the whole way. When it is at its worse, I take flagyl and cipro and I find the side effects for both of those drugs to be considerable. So, I take them for 15 days each and then go off them until the pouchitis becomes unbearable again; usually about three months in between rounds. I've tried other anti-biotics but they either don't work or don't work well.

hi..i have had chronic pouchitis since as long as i have my pouch(06)only identified as such after about two awful years..i hah then been rotating antibiotics thereafter..4 every three or 4 weeks switching off..however,after three years it seemed my 4 antibiotics were serving me less time so i thought i would throw in another one which happened to be augmentin and to my delight i have been on it 7 months now..still working..i take one 875 mil 2x a day..none of the others worked like this..i am keeping my fingers crossed it continues..

i believe the number was like 10 to 15 per cent have chronic pouchitis issues...

rebe

quote:

This question comes up every now and then but you have to consider the group of people who will be coming to this website. Most people who have a j-pouch and live out their lives merrily, won't be coming here.

I have to agree with rustyskyline. I have gone on antibiotics twice for what was assumed to be "pouchitis" twice in 10 years. But every scope I've had has shown my pouch to be completely healthy.

I feel for those who continue to suffer after surgery. Do you currently suffer from pouchitis?