"they keep changing there minds & are seriously confusing me"
Wild-Swan, I think this is what is technically known in any profession as "confusion". Them, not you. It does not bode well that they can think severe pain, increasing exhaustion and thickening of the gut wall means inactive Crohn's. Was I you, I'd be looking for doctors who can explain to me clearly and logically what the h*** is going on, or at least what they think the possibilities are.
What they are currently doing, IMO (it ain't humble !
) is the exact opposite of what logic dictates. It is almost as if they just don't want to spend the money. Your symptoms are worsening, and they are cutting back on your meds ! That, more than anything, is what you need to really pin them down on. Because if they are only paying attention to a CT scan and an old colonosopy, they seriously don't know their @sses from their elbows and you need to steer well clear of them !
Don't be afraid to quote the phrase, "listen to the patient, (s)he is telling you what the disease is". It is an old, very basic medical maxim, and if they don't recognise it and sit up and take notice of it when reminded by a patient, then they practically have a stetson hanging on their office door - I don't care what courses they have been on.
Someday I hope to be this forceful with my own doctors !