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I've had a j-pouch since 1999. My current GI doc is not the same GI doc I went to when I had raging UC for years. My new GI doc is worried about my having chronic pouchitis. I've been hospitalized a couple of times for complete blockages that lasted a week each. I also had pouchitis at the same time. I was on Flagyl for a month and Cipro for 2 months when I had pouchitis. He also put me on Pentasa. I don't know if there is any relation between blockages and pouchitis, but my GI guy thinks I may really have Crohn's colitis instead of UC. So I am still on Pentasa (about a year now) without really questioning the rationale for it. (I also take the probiotic Flora-Q.) I know that Pentasa is a med for UC/Crohn's. Does anyone still take Pentasa? Is there really any need for it now that the colon is gone? Can it prevent pouchitis? I'm beginning to think there's no need to take Pentasa.
UC, 1989 One-step j-pouch, 1999 Crohn's of the pouch, 2002 Ankylosing spondylitis, 2007 |
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5-ASA drugs are just one of the possible treatments for chronic pouchitis and they are a good option for maintenance therapy, if they work, because you don't have the issues of long term antibiotic treatment. I take Azulfidine for my cuffitis to help stay in remission. There is a theory that chronic pouchitis is a return of IBD, either as Crohn's or UC reacting to the change in the mucosa of the pouch ileum to more closely resemble colonic mucosa (both visually and on a cellular level). But, they really don't know at this point, particularly since some folks without IBD do get it.
Bottom line, if you have recurrent pouchitis, the treatment is often the same as chronic and you probably need maintenance therapy. The idea is to prevent the relapses, or at least prolong periods of remission. You may want to print up and keep the articles in the following links for reference. This link is to a very comprehensive review of pouchitis treatment. It's a few years old, so it is not completely up to date, but still relevant. http://usagiedu.com/articles/pouch/pouch.pdf The article in this link is newer and discusses all diseases of the j-pouch. It indicates that 5-ASA drugs are used only for chronic, not for relapsing pouchitis. http://usagiedu.com/articles/pouch06/pouch06.pdf Jan Take a deep breath and relax; this too will pass. |
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Thank you, Jan. You are amazing. I appreciate the time and care you take in responding to our questions. Mav+
UC, 1989 One-step j-pouch, 1999 Crohn's of the pouch, 2002 Ankylosing spondylitis, 2007 |
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Jan, I just read the most recent article you recommended. I saw my scope on video and photographs. My j-pouch looked so much more like Crohn's and not at all like pouchitis, I guess these authors would say I had Crohn's of the pouch. I also have IBS, too. Gee, I guess I should update my profile. What fun!
UC, 1989 One-step j-pouch, 1999 Crohn's of the pouch, 2002 Ankylosing spondylitis, 2007 |
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A picture tells a thousand words. A nice thing about being awake for your scopes is that you can see what the doc tells you about. I really liked the Cleveland Clinic article about j-pouch diseases because of the detailed information, and because of the many photos and drawings.
Jan Take a deep breath and relax; this too will pass. |
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I took Pentasa for about 5 months about 10 yrs ago. It worked very well - until it stopped working for me and started against me - irritation, pain, diarhhea.
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