Posted 10/28/2015 2:23 PM (GMT 0)
Saw this yesterday, but too tired to reply... Not that I have anything of great import to say today. minnie - I can't explain your symptoms, I'm sorry. I can only really repeat what I said yesterday, which is that Crohn's is never diagnosed on symptoms alone. A GI can certainly have a strong suspicion of Crohn's, but if they run all the right tests (colonoscopy, small bowel imaging, etc.) and they all come back negative for Crohn's, then they won't give a Crohn's diagnosis. It's certainly frustrating for the patient and it's probably frustrating for the GI, too. But it's not really the GI's fault either.
Maybe it's worth seeking a second opinion again, I dunno. It just seems like you've had loads of tests and none of them came back positive for anything other than non-specific microscopic inflammation. If you'd had Crohn's for all this time, there should be past evidence of it in your biopsies, but there isn't. It's possible that you originally started out with a case of infectious or microscopic colitis, which either never went away or turned into post-infectious IBS - I really don't know. I'm sorry. If I could help you, I would. I do think you'd be better off leaving your current GI and tapering off Entocort - that's the only advice I can give for now.