J-Pouch, now Chron's?

Hi Jim...so sorry to hear.  I had my original j pouch surgery in 1989.  Six years ago or so I started with problems.  3 years ago they found 2 large ulcers in j pouch and inflammation of cuffitis, pouchitis, u.c. in the rectum, and inflammation of small bowel.  But...no one wants to confirm crohns!  No definite positives for it has come back in testing.  June I am  going in for adhesions/scar tissue removal with hopes that I can get adequate blood flow back to the pouch.  I have about 13 surgeries since 1989 so I'm sure those adhesions are like a wicked spider's web.  I wish you well and hope they can find out for sure what is happening.

Patti

Answer is yes, I have.

On a scope back in 2007 or so when they looked at the neoterminal ileum above my J Pouch scattered ulcerations were noted.  They had not been previously noted in the 15 years of scopes previous to 2007 going back to my 1992 J Pouch surgery.

Initially Crohn's was suspected but my Cleveland Clinic trained and Bo Shen mentored GI told me that the pattern of inflammation suggested the ulcerations were due to backwash stool and SIBO, a situation that was being aggravated by fecal stasis above the J Pouch due to a lot of inflammation at the J Pouch inlet, causing a narrowing of the J Pouch inlet.  He felt that the pattern of inflammation and the healthiness of tissue up the pipeline suggested it was this and not Crohn's.

My treatment didn't change since then.  I modified my diet, and the inflammation calmed down a bit since then.  I am as good or better.  Crohn's remains a POSSIBLE diagnosis but the clear reality is absolutely nothing changed in my treatment since then and I am doing as well now as then.

You have to understand there is no backflow stoppage valve on the J Pouch as there is in the colon, so backwash of stool will happen and your inflammation and ulcerations can possibly be due to that and SIBO.

Another clue to consider if your biopsies are ambiguous (which is pretty common even with an assumption of Crohn's), is whether your small bowel lesions are contiguous with the pouch, or found higher upstream and more remote. If it is due to SIBO, fecal stasis, bachwash or whatever, it would be contiguous with the pouch. It is more likely to be Crohn's if the lesions were more remote from the pouch. More likely, but not definite.

If you have been taking any NSAIDs or salicylate meds, that also can contribute to a more generalized inflammation. Even if you tolerated them for years, you can suddenly develop issues. I went through this after long term use of NSAIDs for my arthritis. Good news is that it is reversible.

A diagnosis conversion to Crohn's does happen sometimes, but is not usually an easy diagnosis, unless granulomas are found in biopsies or there are fistulas nowhere near suture lines.

But, I think that what they are finding is that as the j-pouch ages you just get more and more likely to have a chronic inflammatory condition. My GI told me that I was lucky to be mostly problem free for nearly 20 years. Like you, I just had the occasional pouchitis that quickly responded to a short course of antibiotics. I did have other chronic problems though, like cuffitis and IBD related arthritis. But, even taking biologics, I still wound up with recurring pouchitis. I am not on constant antibiotics (yet), but I keep them on hand and take a course as soon as symptoms arise. I am now rotating Cipro and Flagyl when I do take them (Flagyl seems more effective for me). When things are quiet, I am taking a couple of Pepto Bismol caplets a day. We'll see how that holds up, but it has been pretty good for about 6 months.

Jan

Thanks for the feedback everyone, good stuff, the initial pics showed the inflammation right up where the pouch and SI connect so I am hoping it is pouchitis only but like I said, I'll deal with whatever comes. They're going to take a closer look next week to determine what it is. Thanks again for the info and feedback, I hope I can provide the positive feedback to other users in this forum and contribute. 

Yes, this has been the case with many of us.  In a nutshell, it can be hard to officially diagnose Crohn's.  I was told about a year ago that I had Crohn's while I was in the hospital (before they got the biopsies back).  The biopsies came back, and they didn't agree with that diagnosis so then I was told it most likely was not Crohn's.  Then when I had surgery for my bowel obstructions, they were able to confirm I had adhesions and not strictures.  More evidence against Crohn's, but it's not 100%.  But as my GI has told me, at least in my case, he will be treating my symptoms as they come regardless of the diagnosis and they will continue to use words like "most likely" or "not likley" instead of definitely saying I do or do not have it.

Hi,

Another veteran here.  Had my surgery in 2001.  Several years with pouchitis controlled with Cipro.  Been diagnosed with Chrohns for about three years now.  Take Remicade bimonthly.  Works well.  Try not to over think it.

Jerry