Part of the problem is that I was just so shocked at the change of diagnosis. I don't think I heard half of what he said after "I don't think it's Crohn's." I'm going to take this weekend and gather my thoughts. Then next week I'm going to see if I can make an appointment to see him again. I really appreciate the fact that he's so willing to talk to me on the phone- at no charge- rather than pull me out of work and charge me for office visits. But this is serious enough that I want to discuss it face to face.
I want him to go over all the test results with me again and explain why he thinks it's UC. I do remember he said that there is no small bowel involvement. Is that why he doubts Crohn's? That would be uncommon, but not unheard of. What, specifically, did the biopsies say? Did they not see granulomas? I know there have been lots of labs run. Was a Promethius test done? What did it say? He said there was thickening of the intestinal wall in several spots. If they aren't contiguous, wouldn't that indicate Crohn's?
I wish I'd had the presence of mind to ask all those questions when I had him on the phone. I was just so floored. The fact that I found out about an hour earlier that someone ran a $450 unauthorized charge on my debit card yesterday didn't help, either. It's been a day.
I had hemorrhoid surgery and skin tags removed on April 24. That's what kicked off this whole adventure for me. I never healed from the surgery, and just got sicker and sicker, until I landed in the hospital for two week. The original skin tags were definitely separate from the hemorrhoids, and I've grown new ones since the surgery. The incisions still haven't healed, either, which suggests Crohn's to me, too.
My response to the medications has felt miraculous to me. I literally went from being mostly out of it, and the doctors talking about surgery, to being allert with little nausea or tenderness in about 3 days. There's been no further discussion of surgery. The hemorrhoid surgery and it's aftermath has be the most miserable experience of my life, and there's no way I would consider any further surgery unless it was a life threatening situation. I do want this nailed down, though, just in case things ever get that serious.
I spent some time last night on the phone with the friend who refered me to this doctor. Our cases are oddly similar. No small bowel involvement, problems in the descending colon, skin tags. She has a fistula, but she's also had the disease for over 20 years. She questions the diagnosis too, and has encouraged me to make an appointment with him to go over all of this. She's been with him for years and thinks he'll react positively to my questions. I've only been with this guy for two weeks, but I feel better now than I have since before the surgery. He listened to my concerns and adjusted my meds on my first visit, and he's scheduled two phone consultations since- at no charge- rather than disrupt my work schedule any more with office visits. It's a completely different attitude from my first GI, who was a real "hit and run" artist. In all other ways he's been an excellent doctor. I want to give him a chance to explain his reasons for changing the diagnosis before jumping ship.