I have had CT scans, ultrasounds & a small bowel follow through with barium & every test has come back “normal”. I haven’t had an MRI with contrast, maybe that would show something? My GI doctor says it is really hard to catch something like this on a scan so I’m not too incredibly hopeful about that. I don’t have copies of the test but everyone is connected to the same system so they should be able to pull stuff up on the computer. The GI doctor I’ve been seeing is at the #1 ranked hospital in my state and he is one of the doctors with the most experience with j-pouch patients in the area. He recommended a few others that also have a lot of experience so I am going to see one of them too. The surgeon I’m seeing is with the same hospital and she is the chief of colorectal surgery & I’ve been told she’s great so that is positive. I find it interesting that everyone has mentioned being admitted to the hospital, being put on bowel rest, etc but when I’ve been to the ER they run tests, say everything is normal and send me home. Maybe in other people’s experiences the doctors found something so that’s why they treated the situation differently. My doctor also hasn’t been able to tell me much about how to prevent this from happening. I’m guessing it’s just so unpredictable that there’s not a lot that can be done to prevent it. So far all of my correspondence about this is in this thread of conversation. Good luck at your appointment, I hope you get some good information & help!
'My GI doctor says it is really hard to catch something like this on a scan.' Sounds like GI has an idea if he said this...have you asked him to explain what he or she means?