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Crohn's Disease Forum

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Joined
Jul 1, 2017
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7
Hello everyone,

I am overwhelmed by a sense of despair. I have Behcet's disease (some specialists at the same hospital insist I have Crohn's instead). My CRP has steadily increased over the last five months. My GI of more than 20 years has left practice. At the appointment, the new GI/Division Head for the region told me that although my CRP is high, it is insignificant relative to that of patients who have a CRP of 100. He stated several times that my scope was normal one year prior. After the third time he said that, I said, "Are you suggesting that it is not possible for a patient's medical status to change within a 12-month period." He confirmed that was the case.

What's a patient to do? The exchange felt biased and insensitive, and overall, I felt dismissed. Almost 30 years of experience with Behcet's/Crohn's and having been shockingly ill more than a few times has led me to believe I'm in medical trouble. (BTW, I had requested a different doctor in the GI unit when I learned my own GI would be leaving. And no other doctor in the region will assume a Division Director's patient). Why must some patients become critically ill before care is provided? Isn't it better for patients and and the system to preempt critical illness?

I have a lump in my throat and tears in my eyes. I don't know what to do and would appreciate any feedback you may be able to provide.
 
To suggest that colonoscopy results cannot change within 12 months is nonsense. Crohn's disease can progress a lot faster than that sometimes.

I don't know what to say except that you have got to figure out a way to get a new doctor, preferably an IBD specialist. Where are you located?
 
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