I feel frustrated too... I had a colonoscopy that showed large ulcers on my intestines, and biposies that showed Crohn's as a potential cause, so that's what they diagnosed me with... I started taking medication for it (Mezavant) and four months later had a repeat colonoscopy... the ulcers were gone. Then the specialist started to doubt his initial diagnosis as he said Crohn's wouldn't usually heal itself that quicky... so now they are trying an experiment whereby over the course of several months they reduce my medication until I am not taking any... and if I get unwell that would confim I have it, and if I'm ok that would suggest I don't... but what worries me about this is that if I do have Crohn's, by not taking the medication I could be causing myself damage and leaving myself open to a flare further down the line. Has anybody got any advice about this? It's kind of a catch 22 situation - I don't want to be taking medication for the rest of my life for something I haven't got, but then again I don't want to become ill because I didn't take medication when I should have.
Anyway, back to the point, it's frustrating not to have a confirmed diagnosis, especially when you don't feel 100% well and know that something isn't quite right. And it's hard to know what to tell other people - do you tell them you have it, or you maybe have it, or something else?! Hope you manage to sort your diagnosis out Vitak.