Pouchitis incidence after jpouch- 94% after 6 years?!

I am confused on the issue here. You write that you might have to opt for surgery because the alternatives (meds and other) don't work.

Where is your choice here?

You either continue fighting this thing or you have surgery.

Pouchitis is a thing....that might or might not appear.

Probiotic said...
Yeah that is the choice indeed- a darned if you do / darned if you don't choice. I may have to opt for taking my chances with surgery in spite of the pouchitis and other risks because I cannot sustain enough quality of life even when not flaring. However, if pouchitis is really 94% incident at 6 years, I may opt to fight a little longer... Trying to get a handle on how frequent or rare pouchitis really is for jpouchers. the stats seem ti be all over the map.

Heh, I'm glad you understood my point. I am in the same boat as you. However, I scrape by with my quality of life. I am on Remicade, gluten free/dairy free diet, suplements and 2 types of probiotics.

I do not question pouchitis, because I don't care. You know why I don't care? Because, when I'm fed up with this bullcrap disease and I can't take it anymore...there will simply be no choice in the matter.

Is it with the actual pouch outside, or after take down surgery?

Pro: I suggest you hang out at www.j-pouch.org again for awhile,tell them that Mike Glenns dad sent you.

Anyway,part of the problem is also cuffitis,which is the 1/2 inch of rectal cuff,that is normally left to provide

better sphincter control. It is actually UC of the cuff.

Also with time the pouch cells try and become more colon like, thus bacterial adhesion in the pouch mucosa.

My son who is 12 years out now,probably had some pouchitis early on but not for many years.

I guess how he controlled it,was the use of lots of Candigone,but now with what he is currently doing,does not need

the candigone.

Old Mike

I have an ileo (bag) so thats not a concern for me, but when i went for my consult and when i talked to other people i found out some things about it. Pouchitis does happen, its usually treated quickly and not a problem. Some people do have more problems with it, thats rare. The cuff should be stripped where no uc is left, otherwise there will be problems. Suebear can explain that better,lol. Most people who continue to have problems after surgery actually had crohns. And if the pouchitis gets too bad, you just go back to a bag. Surgery is not giving up the fight, please dont think of it that way. Good luck!

By the time you are ready for surgery you will almost have no choice in the matter, as it went down for most of us who had it. I opted for the permanent ileostomy for the reason of pouchitis - one bout of it would have been too much as far as I was concerned. I was done dealing with butt problems.

I am in the percentage of those who had complications after surgery and I needed additional surgery. I will say though, I am so thankful that the nightmare is over and I now live a very normal life. I understand where some would be skeptical about the ileostomy, and that is especially true if you're young and single. All you can do then is try the j-pouch and hope for the best. Travel to a teaching hospital in a big metropolitan area like Cleveland or NYC (Mt Sinai) because they have the best surgeons. Depending on where you go, you can have a very good, almost fail-proof pouch constructed. And, as was mentioned, if the pouch fails, it will not be the end of life as you know it to have an ileostomy. There is nothing you can't do with one.

I will validate many in saying that I know all of my options sucked, but surgery was the lesser of the evils. I would have much preferred to not be sick at all, but that was not to be. Most of the time I forget I even have my ileostomy, and I never dwell on what I can't change. I do feel so much better; as redundant as that sounds it is a reality of having surgery. I would do the same thing (permanent ileostomy) over again if given the chance. The benefits of having it by far outweigh anything I have gone through since having it done. AND, I enjoyed many years of health and knew that UC wasn't always THAT bad, but, unfortuately, it did tag me hard in the end.

I've had pouchitis once in 11 years, that was at year 7. As Marianne said, more and more chronic pouchitis is being diagnosed as Crohn's.

Sue

I think the chance of pouchitis once in a few years is a lot less worrisome than a UC flare up. Of course, if it were chronic pouchitis, that's another story. I am also aware of the fact that with any surgery, there is a chance of needing reoperation. Think about it, even cosmetic procedures often require reoperation. It's not just major surgery like bowel surgery, small procedures like rhinoplasty can require a redo. Lasik eye surgery OFTEN needs redo. I think it's almost expected that you may need reoperaton with something major like that. If you don't, you're lucky - as with any procedure.

I personally wouldn't let the idea of needing a future surgery stop me from having surgery if I were struggling with my daily life due to UC. I've never had a huge fear of going under the knife or ansthesia.

Old mike- to be honest, whenever I visit jpouch.org I get too terrified and abandon the thought of surgery over fighting on.

Post Edited (Probiotic) : 9/30/2012 6:39:39 PM (GMT-6)

Jpouch.org can be scary. But think about how many surgeries there are per year. Multiply that over years. Then think about the number of people you see having problems on jpouch.org or other forums. That's a very small percentage of problems. The people who don't have problems just naturally wander off the support page as they don't have anything to discuss.

The front page of jpouch.org (not the forum page, but the very first page) has success stories. Every once in awhile there will be "jpouch success" threads where many people will post. Also, I did a search for jpouch blogs and found people having very successful outcomes.

Oh, and be aware of DogDay on jpouch.org (or his name might now be ih8myjpouch). He complains alot about his jpouch. It sounds like he had an unsuccessful surgery 20 years ago - so he has a right to complain. But he invades lots and lots of threads so it seems like many people have his problems so you need to pay attention to the username.

Post Edited (ActiveUCer) : 9/30/2012 6:51:27 PM (GMT-6)

I've been acquainted with Dogday for 11 years, under his expansive list of user names. He is a jpoucher, with relatively few jpouch problems. His biggest problem is that he is mentally ill and well, it goes downhill from there. He's been kicked off that site dozens of times; he's been kicked off this site a handful of times.

Sue

That is really interesting. Yep, sounds like the docs have no clue and this is a mystery. And that study goes against everything a GI doctor tells a UC patient and that is that UC can ONLY be in the large intestine. So how is it they are saying UC is in the j pouch? The pouch is your small intestine. They need to do a lot more research that's for sure.