Waiting for a diagnosis

Last updated: May 2018

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been “diagnosed” with IBS, Crohn's, hepatitis, gallstones, pancreatitis, liver disease and most of these diagnoses have been retracted.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.

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