Crohn's Disease Forum » Support Forum » Undiagnosed Club » Undiagnosed - Second opinion advice

03-10-2015, 04:09 PM   #1
Join Date: Mar 2015
Undiagnosed - Second opinion advice

So I've been struggling with this since 2011, when I was diagnosed with SIBO at age 20. My GI doctor at the time told me my levels were the highest he'd ever seen and he put me on about 4 rounds of Xifaxan. While things did improve, my symptoms were still there and I had bouts of severe pain. Last year I went to a new GI doctor and had a small bowel follow through and a colonoscopy. The SBFT showed thickening and inflammation near the end of my small intestine. The colonoscopy was clean. I now have another new doctor, since that one retired. He now wants me to do a CT enterography to see if I have crohns. I don't particularly like this doctor and I'm wondering if I should just go ahead and get the CT scan or if I should go and get a second opinion. Thoughts?
03-10-2015, 05:47 PM   #2
Forum Monitor
Join Date: Dec 2013
Location: London, UK
It does sound like it might be Crohn's even if the colonoscopy findings were all negative for Crohn's - did they do biopsies? I can see your dilemma though - you've had two GIs who haven't bothered to follow up on tests and haven't given you a diagnosis so on the one hand a doctor who seems prepared to do that looks relatively promising. However it is important that you trust your doctor and it's good if you like them, especially if you are dealing with a longterm condition like Crohn's. What is it that you don't like about your current doctor? You might consider going ahead with the test and getting a diagnosis and then after you can change to another GI - perhaps get recommendations from others in your area. It also depends on how easy it is for you to get second or third (if necessary) opinions.

I think if I were you I'd consider talking to this doctor about having an MRI instead of CT scan - there's a valid reason for this since you're young and if you have Crohn's then you'll likely have quite a lot of imaging over your lifetime and you want this to involve radiation exposure only when needed. Depending on where you are and the availablity of MRI, this should be just as good an option in terms of looking at your small bowel and diagnosing Crohn's. It is more expensive though and that can be a factor, plus there may not be someone as experienced at reading the scans and interpreting them, and you may need to wait longer for an appointment.

I don't think there's a big problem with you having a CT scan I just think you might as well continue as you would want to go on - if you indeed have a continued need for imaging. But sometimes the need to get imaging quickly outweighs any concern about radiation exposure.

What type of SBFT did you have before? I do think from the findings previously that you should follow up with some more small bowel imaging - whether with this doctor or a new one.

How have your bloods been? Any raised inflammatory markers like elevated CRP? Have they done a fecal calprotectin test?
03-10-2015, 08:56 PM   #3
Join Date: Mar 2015
Thanks for your response!

They did biopsies and those were clear. I had a barium X-ray. They haven't done any blood tests or fecal tests.

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