I don’t have much to add, but mainly wanted to say that yes, I’ve been there. There are no clear answers and it is so frustrating.

After my first attack (complicated and admitted to hospital for 3 days) I started seeing a beloved local GI. Everyone in my family and most people in my town see this doctor and he is famously sweet and kind. After my initial flare and hospitalization I made an appointment with him, thinking he is going to give me great advice and information - instead he sees me for 2 minutes and ushers me out of his office. I’m given no advice whatsoever. Based only on my calls to his officr and bloodwork (always slightly, so slightly elevated) and no physical exams, he diagnoses me with repeat flares and starts demanding I get surgery. My general feeling was that he was pushing me to surgery because he was sick of me calling his office (I had been calling 2-3 times a month after my initial scary and serious flare). It was so awkward and weird that I’ve stopped using him as a doctor. Three surgeons have told me I’m in a grey area and surgery is a toss up. I now use a colorectal surgeon as my main doctor for this. He is very kind and jokes that I can call his office as much as want.

But, in total, I’ve had to pull information from all the doctors I’ve seen. I don’t know if its that they don’t understand this disease and there is a lot of conflicting information, or if they just don’t read up on it much because they just want to push us to surgery.