Thanks everyone, to answer questions: I have been on remacaid for a long time in the past, azothioprine, endocort, Pentasa, prednisone, humira, and probably others that I'm forgetting. But even on everything if I'm in remission or not, I still have chronic constipation. I've have a history of bowel obstructions treated by NG tube in the past along with strictures and stenosis. Two years ago my GI and a surgeon met with me to get a resectioning done to help solve the constipation/chronic partial obstruction problems. My insurance wouldn't cover it due to it not being "a necessary" procedure. They considered it elective. Now in a new place, with new insurance, same problems, I thought the option could be brought up again. With this new doc not believeing past pathology/biopsy Dx, he makes me feel like I'm making it up! He says "it's very unlikely that you have chron's, what you are describing isn't normal" but I do agree that I most likely have a lack of parastalysis somewhere in my GI tract. But with out doing a stomach empty study I don't know how he can be so quick to diagnose gastroparesis. Old GI wanted to do a pill cam to see if I had CD in my upper ileum or strictures that were missed in the small bowel follow through and CT, but he was afraid the pill cam would get stuck in an obstruction.
I don't feel like I am in an active flare, doc says it's "unheard of that a person with CD can be in remission without being on meds" further leading him to his conclusion I don't have CD. I want to make the trip to Denver for a Different GI, but now I'm just kind of fearful I will get the same treatment. Wasted money/time. I feel like I need to just eat what I want, get an obstruction, and go in for emergency surgery for him to believe.
Just sick and tired of being sick and tired. Venting! But it is SO NICE knowing there are people outside of the normal "Crohn's Bell Curve" or that have doctor problems too. I feel like my blood labs never show what is really happening.
Side note: anyone have any luck finding more areas of CD or strictures by pill cam than what has been shown on their CT or colonoscopy/endoscopy????? Or any better luck with having a MRI compared to their CT????