I too went from a diagnosis of Ulcerative Colitis to Crohns to Ulcerative Colitis and now Indeterminate Colitis. Actually first it was colitis and The specialist didn't explain what that was or that it was at all serious. Took me a while to work it all out. I researched the hell out it and pretty quickly felt like I knew more about IBD than the specialists, especially how the disease manifested in me.

I fired the first specialist after I realised he was not prescribing mt the right treatment - he was in fact a colorectal surgeon not a gastrointestinal specialist so he was also the wrong type of specialist.

Then a few months later I got sick. Really sick. I remembered a great GP; he took me seriously and referred me to an old friend who a really good gastro intestinal doc, who was ex head of the best GI ward in the state. But he was actually crap at first. He treated me like a hypochondriac (like most doctors). He organised a colonoscopy for a few months - despite saying I didn't know if I would last that long. Four days later I admitted myself to emergency unable to walk stand or sit up in bed, with a letter from the GP backing me up.

Things went from bad to worse and by this time I had blown through at least four worst case scenarios. The rest of the details are not so important - I nearly lost my colon and went onto massive doses of hydrocortisone then pred for months. Withdrawal was hell. Then a long hard recovery lots of meds. Now I am now doing great, amazingly, and am med free and mostly complete remission for 4 years.

Although my treatment was spectacularly successful in the end, I had to cut through a load of bullshit and find some good doctors. Since my private specialist was the ex head of the ward I could use that fact to intimidate (subtly) the other doctors somewhat which was very helpful in obtaining the tests I needed. Sad but true. A timely CT and then insisting on a second reader after they deemed it clear (WTF I am a grey rake that can't even sit up) is what saved my colon I believe. Second reading came back with severe inflammation in ascending transverse colon. You see, most doctors I have come across I find treat you like a hypochondriac at first and you have to subtly nudge them into taking you seriously. It's like fucking chess game sometimes and you have to be really careful what you say. Stroking their ego while actually being their director and treating them as contractors. Playing dumb, while researching the hell out of your condition so know at least what tests are required and what all the treatments are available. Mention that you read medical journals is absolutely out.

I was a lucky - I had a career as biostatstican and data scientist for 7 years in a hospital before this happened, so I was wise to just how appalling the medical profession can be when it comes to solving open problems, and gave me confidence to tackle it myself. It just should not be that way. Most doctors are not stupid though, but I believe most have their powers of creative problem solving beaten out them at med school.

My heart goes out to all IBD sufferers. If you've experienced it you wouldn't even wish it on Adolf Hitler's evil twin.