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

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TheStruggleIsReal85
New Member


Date Joined Apr 2017
Total Posts : 3
   Posted 4/14/2017 6:24 PM (GMT -7)   
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
Veteran Member


Date Joined Feb 2015
Total Posts : 723
   Posted 4/14/2017 7:23 PM (GMT -7)   
I am confused. I thought the Prometheus test was to check levels of Remicade and antibody levels?

Are you on Remicade? I'm sorry but I am confused and just want to understand.

Personally......I would drive the four hours. I don't think I would be willing to battle a doctor that discounted previous tests and information...unless he had a really good reason that he could explain. Even then....I would get another opinion.

Constipation can be attributed to Crohns. When I went thru a spell my GI informed me there was a possibility the soft food and laxatives could be either temporary....or not..(I was and still am on Remicade)

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1653
   Posted 4/14/2017 9:05 PM (GMT -7)   
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.

noodlesnoodles
Regular Member


Date Joined Nov 2015
Total Posts : 273
   Posted 4/14/2017 9:52 PM (GMT -7)   
I can't offer any advice on the doctor, as I'm going through something similar myself BUT I just wanted to interject to see if there are any Registered Dietitians in your area? It sounds like you are in remission and the main issue now is eating, so it may be worth saving up/shelling out the money for a couple RD appointments (assuming your insurance doesn't pay for nutrition services - mine doesn't). Doesn't solve the long term care issue but might help you in the meantime?

TheStruggleIsReal85
New Member


Date Joined Apr 2017
Total Posts : 3
   Posted 4/14/2017 10:22 PM (GMT -7)   
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????

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1653
   Posted 4/14/2017 11:13 PM (GMT -7)   
1. It's absurd to say that it's "unheard of that a person with CD can be in remission without being on meds." It happens all the time. While it's true that the majority of people with Crohn's needs meds to get in remission and to stay in remission, there is a subset of maybe 20% to 30% of people with Crohn's who have long periods of remission with no medications.

2. A person with a history of strictures/narrowing, or even just a possibility of strictures/narrowing, is not a good candidate for a pillcam. It could get stuck, which would lead to horrible pain and vomiting and then an emergency surgery to remove it (which is very expensive, not to mention riskier than any planned surgery). The pillcam test is more commonly done for diagnosis, not for monitoring. It is done for monitoring when symptoms are present but other tests like colonoscopy and MRI or CT scan don't show much.

3. The best tests for tracking/checking narrowing/strictures in the small bowels are either an MR enterography or a CT enterography (MRI or CT scan with oral contrast and IV contrast). The MR version has no radiation but takes longer and costs more. The CT version has radiation so shouldn't be done year after year after year, but occasional times is ok. It's cheaper and quicker. Both are very good at identifying narrowings.

4. For the colon, strictures or narrowing should be monitored with colonoscopies and possibly with MRIs or CT scans.

Is the GI you saw an IBD specialist? Or just a run-of-the-mill GI? I've found that many run-of-the-mill GIs are in over their heads trying to treat Crohn's disease.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10096
   Posted 4/15/2017 4:15 AM (GMT -7)   
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.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4392
   Posted 4/15/2017 6:39 AM (GMT -7)   
You absolutely have to go to a different doc, even if you have to travel 4 hours! My CRP never raised, even when I was in the middle of a bowel obstruction. And I have been in remission since my re-section surgery in 2014 and I'm on no meds. And surgical pathology from the surgery and biopsies earlier confirmed Crohn's disease. Your doc doesn't know what he is doing!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

TheStruggleIsReal85
New Member


Date Joined Apr 2017
Total Posts : 3
   Posted 4/15/2017 11:14 AM (GMT -7)   
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.
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