Posted 11/18/2011 8:41 AM (GMT -7)
My first diagnosis was ulcerative proctitis, and the GI who discovered that only used a sigmoidscope, so he only treated me with local meds like suppositories. That didn't work out too well so I switched GIs. My 2nd GI started me on Asacol, at a pretty low dose, and that made me somewhat better. He couldn't scope me, though, because I got pregnant and then breastfeeding. When my daughter was almost 2.5 I had my first colonoscopy and he discovered inflammation in the rectum, yes, but also the cecum. He was somewhat freaked out by my "right sided disease." And he upped my Asacol to the max, which made me quit breastfeeding and also feel better.
But a year later I was still having problems and I switched to Pentasa. That made me feel a LOT better, kind of confirming that I had disease in the small bowel as well. Some UC patients can have inflammation in the rectum and cecum, but it's pretty unusual, and although my GI never said that I had one kind of IBD over another, just choosing to treat me as if I had Crohn's helped a lot.
I had my 2nd scope a couple of years after that, plus an endoscopy because I had a stricture in my esophagus. At that scope I still had proctitis. My cecum was clear but I had ulcers in the terminal ileum. And I had gastritic/esophagitis. Colonoscopies cannot get beyond the terminal ileum. There are ways to visualize the small bowel, like a pill cam and even a new kind of upper endoscopy. But those are done less frequently than you might think. Imaging studies like a small bowel barium series, MRI with contrast or a CT scan can also provide small bowel inflammation results.
After being anemic for a good while I switched GIs again and we've just gone ahead and called it Crohn's. It is sometimes hard to differentiate, especially if the biopsies are not clear. I'm not sure it's all that critical to give your IBD a name, but if you're considering surgery it sure does matter, because Crohn's will never really go away with surgery. Plenty of people get a good long remission from a resection, though, so don't toss out the idea completely.