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Can Colonoscopies/MRI's Miss IBD?

  • By ray195

    Hi there!

    Over the past couple of years, what started as just having food intolerances and a sensitive stomach has turned into a progressively worse battle to feel well when my GI track tells me otherwise.

    I have chronic diarrhea and nausea, in addition to pretty constant pain in my abdomen, blood and mucus in stool, and inflammation markers across the board. For over two years, my white blood cell count was tracked because it was above normal limits consistently, but no further testing was ever done it was just “notated”. I didn’t even understand that was an indicator of inflammation until a recent trip to the doctors this year after a particularly bad flare.

    Over the past few years I’ve had these flares, which can honestly be pretty debilitating, without much warning. Diarrhea and way too much blood, vomiting, and so much inflammation in my joints moving is out of the question. It feels like the flu’s hulk like cousin and can take me out of work for close to two weeks.

    I honestly always thought these issues were just complications of my food intolerances or a mild IBS, but I’ve cut everything out of my diet I possibly could and they still occur. So during the last flare I finally went to the doctors while the issues were persisting and from all of these previous symptoms and my high WBC they finally mentioned it could be IBD.

    The idea that I might finally have an answer for issues that I’ve just been told were food or mild IBS was honestly such a huge relief. Fast forward to trying to schedule an appointment to speak with my GI Doctor who previously diagnosed me with food related IBS. I was sent straight into a colonoscopy without any consultation and nothing was found, even after taking biopsies. At this point, there were no plans to do further testing, but my primary care had made concerns that my symptoms went above and beyond IBS, so I decided to ask if I could come in to discuss more with my GI doctor. Instead of a consultation, another test was set up, this time an MRI E, again nothing major was found.

    I know I should be happy that IBD hasn’t been found in either of these tests, but at the same time I’m worried because my symptoms (which extend past the ones mention) just don’t all match up with IBS. I want to ask if there’s anything else I could be suffering from, but my doctor is pretty determined not to ever have a consultation with me and just say it’s IBS. I’m scared that I’m going to go years with this progressively getting worse and worse until I have to go through this all again.

    Keeping that in mind, I guess I just want to know if it’s possible both these tests could miss an indicator of IBD? It took months to even get the tests done and by the time I did, I was no longer in a “flare”. I’m just curious if others have had similar symptoms and then everything came back normal, what you did next.

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  • By Pam.Kingsland Keymaster

    Hi @ray195, thank you so much for posting and sharing your journey with us. I know how frustrating this can be, to know that something is wrong, but to not have any answers! We conducted a survey a while back that concluded that 62% of respondents needed over 5 office visits before they received a diagnosis and 57% of respondents were misdiagnosed prior to receiving their IBD diagnosis! (https://inflammatoryboweldisease.net/infographic/invisible-journey-ibd-in-america/)

    So, as you can see, you certainly are not alone in this. Have you considered making an appointment with a different doctor for a second opinion?

    I wanted to share some videos from one of our advocates, Dr. Nandi, regarding receiving an IBD diagnosis-

    https://inflammatoryboweldisease.net/video/diagnosis-crohns-colitis/
    https://inflammatoryboweldisease.net/video/labs-to-diagnose-crohns-colitis/

    I hope this is helpful and I hope you find some answers soon! Keep us updated on how you’re doing and please reach out anytime. We’re all here for you!! Sending strength – Pam (team member)

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