I saw my gi doctor yesterday and we talked about his thinking on my diagnosis before/after surgery and we also reviewed his recommendations about surgery. Everything was very rushed then and I was very sick, and mostly I'm just trying to make more sense of things now that things are calmer; I'm not really doubting my choices or his recommendations. Since I know some folks on here are trying to make decisions with indeterminate diagnoses, I thought I'd relay some of what he said, as it might be helpful.
He mentioned that Dr.Crohn's first paper on the disease was published in 1932, but it wasn't until the 1960's that Crohn's colitis was accepted as a diagnosis at all; before then, they didn't think Crohn's could be in the colon. Crohn's colitis is still not well understood.
The ways that you can diagnose Crohn's definitively from the pathology after a resection (removal of all or part of intestine) are a) granulatomas on biopsy and b) deep layers of tissue are affected. However, only 40-60% of surgical resections in people w/crohn's see granulatomas, so lack of granulatomas doesn't prove anything.
In my case, the evidence for Crohn's was a) patchy inflammation on scopes, b) responded to antibiotics in a flare sometimes c) granulatomas on biopsy of a skin abscess on my hip. The evidence for UC was a) no granulatomas on colon biopsy, b) deep layers of tissue not affected, and c) clinical symptoms were always like UC, no small intestine involvement
He said he still leans toward my having Crohn's (although this is not what he said last time), and that if I have UC, I have some variant of UC that is more like Crohn's, and hence would have been more likely to have failure with a j pouch.
He is not clear how the disease boundaries will play out when more is known, but the area of overlap is complicated, and it's not quite accurate to say that there are these two completely different diseases, and that you just have to figure out which one you have.
We also went over my last bone density scan, which shows some issues. He said the bone density is also affected by chronic inflammation, not just by prednisone use, and that the bone density is more affected in Crohn's patients than UC patients. (He wants me to see an endocrinologist about the results).
I also asked about lifetime colorectal cancer risk, had I kept my colon. The figure in people w/colitis is 30% but he said mine was higher because I had chronic inflammation for so many years.
It was a helpful conversation for me, and it made me feel more solid in my decisions. If I didn't have this lingering butt wound, I wouldn't even be thinking about it.....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery