New doctor won't believe that I have Crohn's

I was diagnosed 12 years ago with CD by CT and biopsy. I moved and now started seeing a new doctor. He won't believe me that I have CD, even after looking at the past medical records. I have been on every med for CD possible, although I'm not currently on any now. Point is, I feel good, in remission, but STILL can't stomach food because of a lifelong battle with constipation. My doctors only response was that I need to stick to a liquid/soft diet with laxatives every day and that I DONT HAVE CD, but instead gastroparesis. I know I feel better when I don't eat solid food, but that can't be my life long option can it? I've been doing it on and off for 12 years and I'm tired of this. New doctor gave me yet another CT scan 2 weeks ago that showed bowel wall thickening of my terminal ileum and inflammation (no surprise here, all of CTs look that way) but then he tells me AGAIN that I DONT have CD, because my CRP rates are normal(usually have normal to slightly elevated CRP even when in bad flares) and a Prometheus's test said negative, but that I should go back on humira to help the terminal ileum inflammation??!!??? He tells me I don't have a disease I have, but then diagnoses me with another (gastroparesis) with out doing ANY test! I feel like I am going crazy!!!!! There is only 1 GI clinic here, next one is 4+ hours away. How do I get this guy to believe me and what have you done for these kinds of symptoms???

clo2014, there is a Prometheus test that looks at genes, antibody levels, and inflammation markers and tries to determine whether or not a person has UC, Crohn's, or neither. It's the sgi diagnostic test (see link below):

https://www.prometheuslabs.com/Products/Default.aspx

To thestruggleisreal, it seems this new doctor is either hard-headed, a poor communicator, or stubborn, or just incompetent, or....?

CRP is NOT ALWAYS a reliable indicator. In some people with Crohn's it never goes up, no matter what. The Prometheus test is perhaps 90% accurate, but that means it's wrong for 10% of people.

You may well have gastroparesis - but a diagnosis should involve a gastric emptying study. Without that, the doctor is just guessing.

As for why the doctor would put you back on Humira without agreeing you have Crohn's, well, it would be interesting to see what the doctor says to the insurance company when he/she puts in the Humira request. Insurance generally won't approve Humira if the doctor doesn't give the diagnosis. Something doesn't add up.

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????

New doctor gave me yet another CT scan 2 weeks ago that showed bowel wall thickening of my terminal ileum and inflammation (no surprise here, all of CTs look that way) but then he tells me AGAIN that I DONT have CD, because my CRP rates are normal(usually have normal to slightly elevated CRP even when in bad flares) and a Prometheus's test said negative

Is this doctor actually a GI? Because if he's ranking the Prometheus test and CRP higher than a CT scan, he sure as hell doesn't sound like one.

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.

That's precisely what the dummy pillcam was invented for! It's a mock-up of the real test, but you swallow a fake pill which - if it does get stuck - will slowly dissolve. There's a marker inside the pill which can be seen on an x-ray. On the other hand, if you pass the dummy pill without any issues you can go on to have the real pill with a camera inside it.

I suggest going to the next GI clinic 4+ hours away. I know it must be a ginormous pain to have to travel that far, but if you get a competent GI doctor it will be worth it. The difference between a crap doctor and a really good doctor is almost like night and day, it's that big.

Thanks, I appreciate ALL of this. I definitely don't want to see this doc again. He is a GI and his bio states that he specializes in CD and celiacs, (I have that too), but I think for someone to be a specialist in CD, you have to know that typically CD can be atypical.

My CT two weeks ago was a CT enterography, but I know sometimes loops of small bowel, if they are hidden or not uniformly distended, might not show well on CT. I HAVE NEVER HEARD OF A DUMMY PILL CAM!!! I'm excited! I want to try this out! I'm surprised it has never been offered to me as an option yet! I ALWAYS feel a burning (like stretching/ripping/hot torch) pain a little higher up and more to the left of my terminal ileum pain. That's why I think something is happening in an area that can't be visualized in all previous scopes/scans.

Thanks for reassuring me that CRP and blood test don't necessarily mean anything. I have been treated in the ER numerous times in all the years and have over heard doctors and nurses say that I was a "drug seeker" or "faking it" because my blood tests don't show "active crohns flare" or because my symptoms don't fit the mold, but my CTs and scopes always show crohns. It makes you feel awful to not have your pain/disease taken seriously. I wish there was more info out there for ER and GI docs to not rely so heavily on blood labs.