pouchitis... after 30 years why now?

My GI, who only focuses on IBD and has a lot of J pouch patients, says many are coming to him 20-30 years post surgery with new issues. He suspects there's some connection b/w our UC days and genetics that inclined us to have IBD to increase new symptoms issues. I never would get pouchitis, had a bad bout 2012, and then developed an abscess and an ongoing fistula issue with other IBD things.

Not saying this is your issue or reason, but you fit the time frame. My pouch is 24 years old on January 10, 2015. Back when we had surgery, there wasn't long term info on how you'd fare 30, 40 years down the line. We are forging the way, and I think they're finding out new things as time goes on. He counsels all expectant J pouch patients that there's at least a 50% chance of a complication down the road, whether mild or severe. When I had the surgery in 1991, they called it a "cure." It's not necessarily.

Hope you find an answer!!

Marcus,
Is it possible, since you are a pilot and travel a lot, that you picked up a bug somewhere that is mimicing pouchitis?
Just a throught...sometimes we automatically go there because we are conditonned to think pouchitis but neglect the other 'normal' problems...
Just a thought
Sharon

So yes I had a similar story and will tell you what my explanation is and what the solution was for me :
As the pouch ages, its mucosa/cells turn from small-bowel-type to colon-type (this has been observed by doctors), hence the stool gets thicker/more solid. Plus as the pouch ages it tends to get "stiffer". The combination of these two things resulted in my having more and more difficulty to empty the pouch. Hence I got fecal stasis in the pouch, which led to bacterial overgrowth in the pouch and pouchitis. Like you, Cipro worked some times but then failed.
So then I found the solution to the root cause of the pouchitis (ie the incomplete emptying of the pouch), which was to use a catheter to empty the pouch (see the thread "self-catheterization" for details).
Have been using it for the last 4 months and it revolutionized my life ! No more pouchitis, no more going to the toilets 15-20 times per 24h including 3-10 times per night etc
So that's my story ... It might not work for you, I don't know, but you have nothing to lose trying it (the catheter) !
Good luck, keep me posted
Arnaud

Oh, and another possible cause of poor emptying of the pouch is that your anastomosis may have become "kinked" or strictured. But here again the catheter is a solution :-)

Thanks Arnaud. I'm having a problem finding that thread through the search function. Are you able to provide a link if you know where it is?
Thanks,
Mark

Actually I just searched and couldn't find it either, it looks like it disappeared ...
The most important links are in the 2nd post (from myself) in this (other) thread :
http://j-pouch.org/eve/forums/...477026276#4477026276
Or if you search for "Medina catheter", you should find other interesting/helpful posts.
Good luck keep me posted,
Arnaud

Similar-got my pouch at age 19. Occasional pouch iris over 20 years, but always treatable. Nearly 4 years ago pouchitis was back 3 times in 5 months-3rd time Cipro wouldn't even totally resolve the symptoms. Experimented for a year and a half with rotating antibiotics and entocort. Added Immuran almost 2 years ago, and once that kicked in over 8 weeks,mpouchitis has been well-managed ever since.

My theory for me is that since that pouch tissue begins to "read" as small bowel tissue a couple decades in, underlying get IBD/UC now has what appears to be large bowel tissue again for our silly autoimmune condition to attack. Probiotics, supplements, diet changes, enemas for emptying, etc. didn't help in my case, but newer UC Meds (which were never available to me 30 years ago) are doing the trick for me, at least for now.