QueenOfCrohns

331d

Hi!
(I’m 20, they found inflammation in my ileum when I was hospitalized for a virus in 2019 and I was properly diagnosed in 2020, I was Budesonide for awhile and then on Humira for a year and now I’m on my 3rd dose of Stelara)
Does anyone else with mild crohn’s get frustrated when you go through what feels like a flare up, but then the test results almost always come back normal? I had a horrible flare where I was out of school for 3 weeks and I freaked out my doctors trying to get help - and they got me in to do an emergency CT scan, but then I felt like I was crazy or “faking it” because the results were pretty much completely fine. I felt so bad and guilty for wasting their time. :( My stool test was somewhat elevated (70 something) but that was it. This has happened several times and it’s really emotionally taxing. I rather my crohn’s actually cause me harm than to have to deal with this. I feel like I’m being gaslit by my body :’( … It always feels like my crohn’s “isn’t bad enough” because they never find inflammation, and I’ve never had surgery, even when I’m having horrible symptoms. Please tell me someone else has experienced this too???

Generalized pain

Crohn's Disease (IBD) Inflammatory Bowel Disease

Nausea and Vomiting

Budesonide

View all
  • ChronicWitch

    331d

    I’ve been in an out of flares since July. Had a colonoscopy in December and it was all “normal”. I’ve passed blood, a whole pill and my appetite is nonexistent. And solid amount of pain and nausea. I was nearly falling over at work the beginning of the week

  • spoonie93

    331d

    I've been there too. I've had really bad flare symptoms before and my tests and imaging have come back normal. It's really frustrating and it does make you feel like it's all in your head and your body is gaslighting you.

  • Codizzle_Est1988

    328d

    Hi, This feels so much like my story. I have had 3- high calprotectin test’s in the 150-200 range three times. Had a colonoscopy, upper endoscopy and MRI that showed everything was “Normal” yet i have awful flares.

  • gretavanfleet

    321d

    I completely get this! I was diagnosed with crohns about 6 years ago (I’m almost 20) and occasionally have a really bad flare that leaves me in the hospital but with all of my levels and tests coming back normal. My dr eventually diagnosed me with “atypical crohns” which boils down to they have no clue why i’m so sick but it’s crohns related 🙃 super frustrating but i completely understand!

  • Ligerato

    307d

    YES the amount of dismissal of pain is so frustrating just because the tests were “normal”. I feel like they think I’m someone trying to waste their time but I’m in pain! It’s extremely degrading and I’m sorry you have to experience it as well

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