Crohns and Ulcerative Colitis are misdiagnosed for each other all the time. Thus there's a chance he might have had Crohns to begin with. I can understand why the doctors are concerned now, since my doctor wouldn't have performed J Pouch surgery if I had Crohns to begin with.

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it's more like a funnel with the narrowing at the end

Not sure if you mean the pouch inlet or the pouch outlet. I have narrowing at the pouch inlet. I have had pouchitis for 17 years (treated with antibiotics) and inflammation above the pouch which is of uncertain etiology. Crohn's is suspected but the pattern of inflammation is unusual and they are not sure if the pattern does not reflect "fecal stasis", i.e., a pooling of the feces above the pouch inlet due to the severe narrowing of the bowel in that area.

I am taking two meds traditionally used to treat Crohn's (Entocort and Pentasa) as well as antibiotics with good results. My docs are concerned by the narrowing which could lead to blockages and/or twisted bowel if it gets any worse, so we have been very proactive.

It's hard to rule Crohn's in and out and WAY too many people get caught up in that, what is more important is using treatments that might apply with either diagnosis (Crohn's or pouchitis). In other words the treatment should not hang its hat on one diagnosis and rule out another. Fortunately my Docs have believed that as well.

By the ways my diagnostic tests were negative for Crohn's except showing inflammation above the pouch and narrowing at the pouch inlet.

thank you for your input. it's great to know you've been managing with it for quite some time. I am not sure what you mean pouch inlet or outlet. I know that the inflammation he has is at the narrowing where it connects to the rectum. he takes miralax and seems to be able to be able to go. I suspect the extra pushing doesn't help and he bleeds. he does not complain of pain and while he has Crohns symptoms, i'd say the meds are more of his issues. I will take your comments to the doc and ask specifically some of the things you've outlined.

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narrowing where it connects to the rectum

That is the pouch outlet. My narrowing is at the pouch inlet, which is where stool enters the J Pouch from the ileum.

It sounds like he could have cuffitis issues and you may want to discuss that with the Doc as well.