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Anyone experience normal scope and MRE, but positive prometheus test and scope biopsy with inflammation?

I recently received a diagnosis of Crohn's disease. I've had 1.5 years of GI pain and loose stools with occasional bleeding, etc. I have since had a colonoscopy that appeared normal, however terminal ileum biopsy was positive for acute inflammation. Therefore, prometheus IBD labs were ordered. These came back positive for Crohn's. I had MRE done (which showed no significant inflammation) so I had the prometheus MONITR test done which showed moderate activity.

I am now with a second doctor for a second opinion regarding treatment options. They are favoring immunologic drugs, however they want to repeat colonoscopy because they need to confirm moderate disease before insurance will cover medications. We have also discussed pillCam. Anyone with experience of essentially normal MRE test and visually normal colonoscopy, but then had repeat scope or pillCam that showed disease? Just trying to decide if I should go through more tests or consider budesonide before immunologics. I did have improvement of symptoms with prednisone taper (but not a long term solution), but no response to Apriso. Thanks for your help!

  1. Hi ,

    I responded to your question on another post, but wanted to write here too incase you saw this one first.

    I did not have an MRE before the pill cam. However, like you I also had colonoscopies that looked normal and biopsy’s that showed active inflammation. I’m glad that your doctor thought to do the Prometheus testing already, and that it confirmed Crohn’s disease.

    My recommendation is if you haven’t already had the pill cam test, I would ask for that test first before repeating the MRE or colonoscopy. In my opinion, the pill cam is a less invasive, easier test than a scope or MRE, and it will provide a new look at your insides.

    As someone who was diagnosed with small bowel Crohn's via the pill cam, I also didn’t respond to oral medication, and ended up trying a few biologics before landing at Remicade.

    Please keep us posted on what your doctor finds!

    Warmly,
    Amanda (team member)

    1. Thanks for responding! I am definitely leaning towards pill cam before repeat colonoscopy. Since my active inflammation was terminal ileum they are suspicious for involvement in small bowel (but MRE was normal). I recently finished steroid taper so unfortunately we now have to wait for a flare so that we can hopefully capture something. My insurance needs more information to indicate mod-severe disease to cover immunologics. I’d prefer to try the pill cam before another scope. I’ve hit my out of pocket max so I might as well get whatever I can before December!

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