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Hello- I am new to this discussion group, but I wanted to check in to get some feedback from others. I had my j-pouch created in Oct 2008 and the final take down in December 2008. Since then I seemed to get two to three cases of pouchitis a year. However, in the past 6mos I have had about 4-5 cases. The last one was so bad that it resulted in a partial small bowel obstruction. I am basically now on long-term Cipro and my insurance finally approved VSL#3 Smiler Since my surgery in 2008, I typically have had about 15 stools a day. I am on some new meds now and that number has dropped to about 10. How often are others going? My doctor seems to think this number is still too high and may be a result of chronic pouchitis. I would appreciate any thoughts or feedback. I have no one else to ask about this stuff! :P Thanks!
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Hi There. I had my J Pouch done in 1998 and have very similar symptoms. I get pouchitis about 4 times a year and each time treated with antibiotics aswell, but usually goes away for a few months before creaping up on me again. I go to the toilet about 10 to 12 times in a 24 hour period, and is bad when the bottom stings. Like you I have just got out of hospital for my first obstruction which has now made me nervous when eating things. I also came out of hopsital with a staph infection so what a ride, but all is going okay now, just the antibiotics for the staph is giving a bad case of the visits. I am going in for another check up up there to see if the obstruction can be avoided in the future. I have had to adjust diet. I use hypoallergenic nappy wipes, dabbing (avoiding the dreaded wipe/scrape OUCH!) and creams for anal care. Thinking about modifying my toilet to have a bidet. I am in Australia and we are not used this technology, so much research required. I hear your frustration as to feeling a little alone, I am the only one in my friendship group that has this, but you're not alone here, it appears I too may have chronic pouchitis but I am going to try hold onto my pouch with everything I can, not real excited about the alternative. My family and friends are fairly supportive and I get teased about the toilet visits from time to time, but it's all in good humour Smiler, makes for long road trips interesting though. Hows the tummy pain when you get pouchitis, mine is like someone gripping my bowel, then punching down on my anus - throbbing almost, very tiring? Stay positive.
Thanks for getting back to me! It sounds like you have been through a lot too!! I know what you mean about being nervous about eating things. I am very strict with my diet. I have found that eating several really smalls meals throught the day seems to help me. For a while after my surgery I was getting really bad stomach spasms when I ate. I don't seem to get that as often now that I'm eating small portions. I think I'm lucky- Up until this last case of pouchitis I tend not to get stomach pains. I just get increased frequency and urgency. Again, nice to hear from you. Hope things go well for you! Smiler
have had my pouch since fall 09 and have had all the same stuff that you two are dealing with. Pouchitis creeps up on me and when I fainally do something about it Im usually walking around feeling like my arse is about to fall out. I take a lot of hot baths to ease the pain and when Im feeling blue and (although I know it won't help) I drink a few shots of something strong. This helps calm the mind and gives me a small respite from what life has dealt me.
Good luck and know you are not in this alone

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