Has anyone ever asked their doctors why some people get pouchits all the time while other people never get it? My sister and uncle have j pouches (15 & 20 yrs.) and never dealt with pouchitis....that they know of anyway. Just seems weird that some people have it constantly and others never get it. I'm 1.5 years post take down and so far so good.

That's almost asking like why some people get UC flares more frequently or more severe than others. I'm sure in large its genetics and/or luck of the draw. If you wind up with chronic pouchitis its bad luck. But I remember reading that only about 5% of jpouchers get chronic pouchitis, it just so happens that they whole 5% congregates here looking for answers, which makes it seem much greater.

Actually, a good question. That is something they are actively researching now. They are trying to figure out if there are ways to determine who will get pouchitis and of those, what treatments are likely to be effective...to avoid the trial and error approach. The same is true for IBD. They are trying to determine who will respond to what medications and who should be referred to surgery, instead of wasting time and resources on treatment that won't work.

Jan

This message has been edited. Last edited by: Jan Dollar,

Hi, new to site but have had a j-pouch since December 1999. I now get pouchitis only once a year or so, treat with Cipro successfully. After take-down, it was very frequent for a few years but has gradually becoming less & less often. My last bout was in Sept 2010 until this week, so almost a year and a half.

For the first few years, I had pouchitis so much that I thought I was going to be one of the unlucky ones with chronic pouchitis. Due to the frequency and the fact that I could tell very quickly if it was pouchitis, I was asked if I would be willing to participate (contribute to a research study. As soon as I would feel pouchitis coming on, I would contact them to give an immediate sample. Pretty humorous, I had to sit on a sterile (unused) paint can to give the sample.

I still thank my creator that, when I was wasting away with UC, my Gastro doc knew this great surgeon working on the, then, relatively new alternative to the external pouch (I hated that thing). I would choose a j-pouch over any of the alternatives without hesitation.

Wishing you all the best in your treatment. As many have said on here
"This too shall pass"

I would love to know the answer to this question. I really never thought I'd be in the tiny percentage of people with chronic pouchitis specially since my UC was basically non-existent to me for 15 years (colon only came out due to cancer risks). Is there any connection between people who have J-pouches due to dysplasia and increased chances chronic pouchitis?

No, dysplasia does not seem to be a factor. But, according to this article from the Cleveland Clinic (2009) here are the predictive factors for acute pouchitis (meaning any single episode):

Diagnosis of UC instead of FAP
Primary sclerosing cholangitis
Extraintestinal manifestations
Preoperative thrombocytosis (blood clots)
NSAID use
Genetic factors

http://www.google.com/url?sa=t...iNkqb0eE-HFw&cad=rja

This later article by Dr. Shen (2010) states similar, but is more updated. Interesting read, particularly the part about how common pouchitis is. As time goes on, your risk goes up...
http://www.ncbi.nlm.nih.gov/pm...3134805/?tool=pubmed

Jan