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Waiting for a diagnosis

I’m Charlotte, 25 and from England, but I have found this website invaluable. I still don’t have a definitive diagnosis of Crohn’s but that is what my consultant suspects. I’ve had 2 endoscopies, 1 colonoscopy, CT scan and MRCP scan, monometry test, Ultrasound scans, bile salts test, blood tests by what seems like the 1000. I’ve been in hospital twice this year. I’ve been “diagnosed” with IBS, Crohn’s, hepatitis, gallstones, pancreatitis, liver disease and most of these diagnoses have been retracted. As I sit here writing this I’ve had a capsule endoscopy and that capsule is still working it’s way through my body.

I am training to be an accountant and am now only working 14 hours a week and my employers have suspended my training until I can cope with full-time work again. They have been very supportive so far.

My whole life seems to be on hold and after 18 months I am finding it depressing. I take budesonide which has helped me enormously until the dose was lowered to 3mg every other day and my symptoms returned with a vengeance and my dose has been returned to a level of 6mg daily which does seem to be the lowest dose that really helps.

My frustration is that I don’t have a diagnosis. For example, travel insurance won’t cover anything that is being investigated but has not been diagnosed.

My joy is finding people on here who understand what it’s like! Thank you.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • thedancingcrohnie moderator
    9 months ago

    Thank you for sharing your story. It’s so nice to have you as part of the community.

    I hope you are doing well these days. Getting a diagnosis can take time which can be so frustrating. I hope today you have answers so that you can have peace of mind and focus on a solid treatment plan.

    Wishing you well for this new year.

    Always dancing,
    Elizabeth (team member)

  • Meagan Heidelberg moderator
    2 years ago

    Hi Charlotte! We are so sorry for the delay in response, but we are glad that you’ve found our site to be so beneficial! Not having a diagnosis can be quite difficult, as you know. Unfortunately it can take a while to receive one. Until then, always know you’re welcome here, as it seems as though you have many symptoms that follow UC or Crohn’s. We certainly hope that you find some answers soon!!
    Thinking of you –
    Meagan, Team Member

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