Veteran Pouch, now Crohn's

I recently had a scope done of my pouch.  I have never really felt great since my J-pouch procedure in 2004.  I would have better days then others, but never felt like I could not know where the nearest bathroom was....always felt some discomfort, gassy and tired. I had really bad days and was diagnosed with pouchitis, put on antibiotics and felt better until I stopped...then went back to baseline.  My symptoms started worsening the last few months and so I scheduled a scope.  I was told after the procedure that there was inflammation in the pouch and ileum along with some lesions that were consistent with Crohn's. There were two strictures, one on either end of the pouch as well..... when the test results came back the diagnosis was Ileitis.  There was inflammation and ulcerations.  My surgeon referred me to a GI doctor.  I am making an appointment... but from everything I have read, it sounds like I am on the road to  a Crohn's diagnosis.... and I can't even wrap my head around that.

Wendy, if you feel well on antibiotics and deteriorate when you stop them you may just have chronic (antibiotic dependent) pouchitis. Have you ever tried staying on antibiotics? Plenty of us do that. Ideally you can rotate between several different antibiotics, if you can find a few that work for you.

I have had Crohn's for about 5 years now , has progressed to my J pouch ( installed1985 at CC , UC since age 20 in 1965) started treatment with Canasa, then Remicade infusions for 3yrs now, which slowed down the diarrhea but is not helping much with inflammation,  about to start on Entyvio with hopes of mitigation. Still on Canasa, unknown if it is helping unless I stop. I buy it "cheap" from Canada out- of- pocket. Been lucky symptom wise from these reads, I just have annoying urgency issues, some diarrhea, gas. Imodium helps if I time it right. Concerned about eventually loosing my pouch, age 74 , staying active as much as possible, paying more attention to diet, little red meat, grease. Not familiar with a lot of medical terms mentioned, just an average IQ here, should have paid more attention, just retired maybe now I will.

Wendy,

Your scope findings make your situation virtually identical to mine, including the stricture at the J Pouch inlet. There is nothing to wrap your head around. It’s pretty simple. We have inflammation in the same areas. What you call that inflammation doesn’t matter. What does matter is how it responds to treatment. In my case it responds well to Remicade and low dosages of antibiotics. I have had my J Pouch 27 years and the last 12 or so with this same situation.  Chronic dependent antibiotics but lowered dosages with Remicade. Don’t worry about the diagnosis. Worry about treating that inflammation. My stricture at the J Pouch inlet has vacillated in narrowness over time. If they can’t get a scope through the inlet they will balloon dilate you. Doesn’t sound like they needed to. As long as a scope can be poked through, no dilation for you. Focus on your treatment so things do not get worse and you need a dilation. 

You sound like a Remicade candidate to me. Maybe Entyvio.  If you haven’t tried chronic rotating antibiotics as per Scott’s suggestion that absolutely should be attempted before biological drugs. I rotated antibiotics for 20 years but started Remicade in 2015. Due to slippage and stricturing.

My situation is similar.  My Crohn’s dx (15 years after J-pouch) came from a Prometheus test, which i believe i got because i had developed persistent joint aches.  Still not sure how accurate that is.  But as someone else mentioned, that diagnosis may open up more treatment options.  

I had not thought of the possibility that Crohn’s diagnosis opens up additional treatment options but it could expand the scope of insurance coverage for treatment.

That being said, the treatments are exactly the same for both UC and Crohn’s when inflammation is difficult to control. One of my colleagues who has his colon is on Remicade for resistant inflammation in his colon after Asacol proved ineffective after some years. Patients who have pouchitis and Crohn’s that do not respond to antibiotics are also given Remicade or other biological drugs.  Therefore what you call the inflammation or its precise location in the bowel may not make a difference in the ultimate treatment if it proves resistant to first line treatments. The only conceivable relevance of a Crohn’s diagnosis is to expand insurance coverage for these identical treatments - and that’s what you want. For that reason, you want your doctor to label the inflammation even if the label is meaningless in terms of the ultimate treatment and the medical science behind the treatment. There is no other relevance to these labels, however. It’s bowel inflammation caused by immune disorder, in different locations.