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Hi all, this is my first post and I'm after advice on a possible Crohn's diagnosis and in particular I'd like to know how you've found the best gastroenterologists, or if they're all similar? I'm UK based.
?As with many on here I've been through quite a journey over the last 5 years and have opted for a second opinion in the last year. My Gastroenterologist started with IBS but, after a last minute re-test showing significantly raised Faecal Calproetectin, started to waiver. Another Calprotectin test, Colonoscopy, MRI and capsule endoscopy has led to Doctor not 100% certain. I've had light inflammation and a couple of ulcers around the terminal ileum but not the clear cobblestoning etc which would clearly indicate Crohn's.
The Doctor's exact words were "I don't think it's Crohn's but I can't say it's definitely not Crohn's. If you asked 20 Gastroenterologists 10 would say I have Crohn's and 10 that I don't". Although interstingly I asked after the bad fatigue I experience which clearly doesn't tally with the Crohn's load seen in the small intestine but at my last appointment I've learnt these aren't always directly proportionate to eachother.
Recently steroids (Oral budesonide) taken as a trial have improved energy levels and massively diminshed fatigue back almost to how I felt years ago. Coming off brought all my symptoms back - intestinal and fatigue, and I'm now on a further six weeks to trial the same.
?If I get worse when I come off again - he'll ask for a second opinion. I'm not sure whether to leave him to find the second opinion or insist on introducing my own preference. Tricky to know but opinions would all be appreciated.
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