How diagnose Crohn's for sure?

There is no foolproof test. There is the camera pill endoscopy, MRI Enterography, CT Enterography and Prometheus Blood Test. All are flawed and not necessarily conclusive. Apart from that, Crohn's can develop after getting a J Pouch, as in my case. Usually they like to try to rule Crohn's out rather than in before doing a J Pouch. But it's a sort of best guess scenario. The MRI Enterography is the "gold standard test", and the only other thing they might do is the camera pill endoscopy- which can be risky if he just had surgery.

The best they can probably be able to do is go with the results of MRIE. But it's not 100% conclusive and Crohn's can still happen AFTER you get a J pouch. In my case 15 years after. That's not a dealbreaker for the J Pouch but what usually is a dealbreaker is established pre J Pouch Crohn's.

By the way I had MRI, CT and Prometheus. All were inconclusive. My Prometheus was negative for UC and Crohn's antibodies and was studied by pathologists on both coasts. It's still not definite that I have Crohn's, but when there is inflammation in your ileum that's what they call it, regardless of whether it may be due to backsplash stool from the J pouch.

What you can do is get a second and third opinion on the MRI study- I would suggest that.

Thank you.  Do you need to do another MRI, or just have another doctor read the results?  Do you have still have your pouch?  15 years without a bag is a pretty good run, my son would take that.  It seems unclear whether making the new pouch can cause Chron's or just a coincidence?  Is there a relationship between the JPouch and Chron's onset?  Or would it reveal itself even with the ileostomy?  Were you or Are you on Biologics to help with the Chron's?  How are you treating the Chron's now?

@Prescott posted:

Thank you.  Do you need to do another MRI, or just have another doctor read the results?  Do you have still have your pouch?  15 years without a bag is a pretty good run, my son would take that.  It seems unclear whether making the new pouch can cause Chron's or just a coincidence?  Is there a relationship between the JPouch and Chron's onset?  Or would it reveal itself even with the ileostomy?  Were you or Are you on Biologics to help with the Chron's?  How are you treating the Chron's now?

He could have another Doctor view/analyze the films.

Yes, I have had my J Pouch for close to 29 years.  What they are calling Crohn's developed 15 years after, whether that is due to backsplash stool from the J Pouch or a self contained inflammation pattern within the ileum has never really been established and probably does not matter.  I am taking Remicade and it responds well to it.  The J Pouch is fine; the inflammation at the pouch inlet and in the ileum is more resistant to treatment, but under control.

Crohn’s can sometimes be diagnosed with certainty, but it’s often hard to be sure. The pathologist is the most reliable source of information here, but I can’t tell from your post how confident the pathologist was in the Crohn’s diagnosis. You could ask for a second pathological opinion from a GI pathologist (the subspecialty is called “Gastrointestinal Pathology”). You may get some push-back, since second opinions in pathology are uncommon. Many (perhaps most) surgeons in the US won’t do J-pouch surgery if they think the patient has Crohn’s disease. I was turned down by two surgeons before I found the one who did my J-pouch procedure 19 years ago, and I’ve been happy with the results. Good luck!

Maybe he should keep the ostomy for now until everything is factual.

I will agree with the pill test. I do trust the Prometheus kit a lot. I had both tests done and that came back Ulcerative Colitis for both. Maybe he should get both done and see how the results come back. Hope this helps. I would trust the Doctors opinions more better though.

What are you current plans now???