IBD

Have you ever dealt with a mis-diagnosis?

PMAsince97Expert
Patient
March 3, 2022 in IBD

Check this one out in the NYTimes today. A painful journey to read about: https://www.nytimes.com/2022/03/03/magazine/irritable-bowel-syndrome-brucellosis.html?smid=url-share

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1 - 9 of 9 Replies

  • Jackie_ZExpert
    Patient

    Whomp its behind a paywall that I can't read.

    I had small misdiagnoses in the beginning, like my GI didn't think I had IBD because "people with IBD don't get constipated"....right, buddy.

    I was not treated for one condition to later find out I had a different one though. It sounds so frustrating and heartbreaking but also could be just empowering as when someone receives a new diagnosis that can give them answers.

    March 11, 2022
  • Wendy_LExpert
    Care Partner of Adult

    Misdiagnosis does not only apply to the initial illness but also complications that can arise. My son recently believed he had a blockage/obstruction and that he could resolve it himself through a caffeine flush and plenty of liquids. Turns out he had torsion in two locations of his small intestines. (He has an internal J-pouch.) It required emergency surgery to repair.

    My point is that we sometimes need to consult our physician and not play our own doctor, even if we think we know our bodies. I am the first person NOT to automatically trust my doctor, but while we don't want to be seen as the hypochondriac, nor should we think we can always cure our health symptoms ourselves.

    March 22, 2022
  • KatelynPatient

    I was misdiagnosed with IBS up front. I didn't have the "normal" IBD symptoms - CRP wasn't elevated, didn't get diarrhea, never noticed blood, etc. - so it was assumed that I had IBS. It went 8 years like that before I finally got so sick that I landed myself in the ER and said I wouldn't leave until they figured out what was wrong. After A LOT of tests at the ER did my healthcare finally find out that I actually have IBD. (Funny enough, the first tests were all for reproductive issues, like ovarian cysts. Only once it was obvious that it wasn't an issue for the OB department did they call in GI.)

    It was hard because I remember all through middle and high school doing everything by the book for IBS and still feeling so sick. (I was misdiagnosed with IBS at 11 and wasn't diagnosed with IBD until 19, so that misdiagnosis consumed all of my preteen and teen years.) It was frustrating to feel so helpless. Once I finally received the proper diagnosis, my feelings were genuine relief. The first words out of my mouth after the doctor told me were, "That makes so much sense." I wasn't sad, mad, or anything else, just really, really glad to finally know what the heck was wrong with me.

    March 23, 2022
  • AnnMarieOther

    So hard cause you understand they not robots but we have to trust our doctors

    March 30, 2022
  • PMAsince97Expert
    Patient

    Yes we do...however trust but verify ;)

    March 31, 2022
  • Wendy_LExpert
    Care Partner of Adult

    Before my son was diagnosed with UC in childhood, he went through a few GIs who 'mistreated' (as opposed to mis-diagnosed) him. What I mean to say is that they suggested certain changes in routine that did nothing to help him instead of calling for the necessary tests to rule out UC or Crohn's. He had all the symptoms and it took a couple of years for one pediatric GI to finally recommend a colonoscopy. And bingo! Diagnosed achieved.

    March 31, 2022
  • PMAsince97Expert
    Patient

    Glad you guys as a team were able to isolate the right disease and hopefully he is in remission!!

    March 31, 2022
  • Wendy_LExpert
    Care Partner of Adult

    Actually, he ended up having his colon removed in 2012 and has lived (mostly) successfully with his J-pouch ever since. Still manages UC symptoms, though, due to some disease in the rectum, which had to be preserved since he was a child during surgery and the surgeon was accounting for growth yet to come...ended up growing 10 more inches in height! ;-)

    March 31, 2022
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