Sorry you are feeling so badly. I know it's scary, but try not to get ahead of where you are now. Just treat that. One step at a time.
That said, I did have a big picture question about one of the posts above. Tunnel said if you have UC, you can't get CD. My docs told me that's not true. We UCers can still develop CD sometime down the road. (My last colonoscopy showed some 'skip lesions' as the UC extended further, which gave rise to this point / potential.) Can one of the veterans confirm or deny this? It's important that we have the facts right. Thanks!
I believe what your doctor may have been referring to is Crohn's Colitis... So it's the Crohn's Disease pathology, but it's also present in the colon, sometimes in areas that are more associated with UC too, like the rectum. Crohn's has a different pattern of inflammation (skip lesions) and inflammation extends through the entire intestinal wall, while it is pretty shallow and generally continuous in untreated UC. The diseases can look like each other but have completely different pathologies.
Unless they find MAP bacterium as the causative factor for Crohn's Disease, as far as I am aware, CD and UC are two entirely different diseases and if inflammation recurs after a total colectomy, I'm thinking the person had Crohn's the whole time. If it is true UC, then the disease should not recur (unless its in the j pouch) which is why the medical establishment considers surgery for UC to be a "cure".
This is what I've gathered from the short while I've researched IBD since being diagnosed, so anyone please let me know if I've been mistaken about