Hello. I’m dealing with some chronic Cuffitis that is not responding to any treatment. Recently they wanted to do some more tests to make sure we aren’t missing anything as an underlying cause. In addition to blood and stool tests to rule out infections and check markers, they did a scope with biopsies, and mri enterography with and without contrast of the abdomen and pelvis. Everything came back normal (except obviously the inflammation in the cuff). Can someone tell me what they might have been looking for that these tests ruled out? Would they show (for example) a fistula or abscess in the area? Is there any other test I should request? Thank you!
Replies sorted oldest to newest
The MRI Enterography is a good test for visualizing thickness changes in the bowel walls, which would be indicative of inflammation upstream of the cuffitis/pouchitis. They are looking for what would classically be called Crohn's Disease, but that highly artificial distinction or classification is now losing significance with modern science. Better to call it upstream inflammation since you have inflammation in the pouch. In my case the MRI Enterography did in fact confirm inflammation at my pouch inlet and just upstream of the inlet.
Because the inflammation I have above the pouch may be from backsplash stool and corresponding SIBO and not Crohn's in the classic sense, they don't call it anything. We know it wasn't there for a full 15 years after I got my pouch, so it's not like I was misdiagnosed. It developed after I got the Pouch. And it seems like this has become a pattern with many pouch patients, especially long term pouches. So the savvy doctors know to always scope up above the pouch and take a peek upstream.
Thank you CT. Ok so it didn’t show anything. Sounds like then they were probably looking for crohns or crohns like inflammation.
Any idea if it would have shown if I have any abscesses or fistula near the pouch or cuff? Is that ruled out with this test?
@Cb2009 posted:Any idea if it would have shown if I have any abscesses or fistula near the pouch or cuff? Is that ruled out with this test?
Fistulas are commonly associated with Crohn's and yes, the MRI Enterography should have visualized any.
Thank you again. I was just doing my own research on causes of treatment refractory Cuffitis and fistulas and abscesses came up so I just wondered if that can be ruled out with this test too.
Looks like in any case I’ll probably be trying biologics next because I haven’t responded to anything else.