My question is...do any of you have a definitive dx of crohn's colitis, but your only indicator is patchiness? Do you have an absence of the other clinical symptoms?
Yeah, I have never had fistulas or (I think) granulomas either. I also had the relative rectal sparing. I don't know the details, but pathology-wise my colitis apparently didn't have the key features of Crohn's. My surgeon even tried to revoke my Crohn's diagnosis, until she discovered her notes which said I had obvious Crohn's of the terminal ileum. She changed her mind after that and said I definitely had Crohn's.
I'm assuming colonoscopies have shown your terminal ileum to be clear. It's possible - but not likely - you could have Crohn's beyond the reach of a colonoscope. If you've never had disease in your small bowel, and if your diagnosis is this indeterminate, you should still be a candidate for j-pouch surgery should it ever come to that. People with indeterminate colitis have a much better prognosis than people with definite Crohn's colitis.
Apart from me, but I've always been amazingly unlucky.