Wow, that must be the reason you had most of your large intestine removed...I wasn't sure on the why.
Nah, IV steroids knocked it on the head, at least for a while. I don't know what US hospitals are like, but in UK hospitals nobody tells you anything about
what's going on. I was in for 9 days and lucky to see a doctor for 30 seconds in the mornings. I had no idea how close I was to surgery. I only found out from my GI later on that my surgeon had wanted to operate and had an argument with my GI about
it - he wanted to give the Remicade more time to work. He also printed out the results of an abdominal x-ray for me which said I had a dilated colon consistent with the appearance of toxic megacolon - again, nobody at the hospital had told me anything about
After that episode I was hospitalised a few more times over the following year, but not sure if I ever got toxic megacolon again - going from symptoms alone, I'd say it was possible. Each time IV steroids rescued me but I ended up becoming hopelessly steroid-dependent. I failed Remicade and Humira and Etyvio wasn't out then. After a flare-up around the time of my birthday (Jan 2013) I decided I couldn't hack this crap anymore and booked surgery. The pathology report showed that I had severe acute and chronic inflammation throughout every bit of my colon - there wasn't any part of it that was disease-free.
So technically my first surgery was elective but even my GI conceded afterwards I probably should have had it two years earlier than I did. I was living on borrowed time and relying exclusively on steroids, since nothing else worked.
I have personally seen patients who thought they were in remission come into the hospital with fulminant colitis/toxic megacolon, but it is not common to say the least (it is a small percentage of the 2.5% of patients who ever get it). It is also more common in Crohn's than in UC patients because rectal inflammation is "harder to ignore," so to speak.
Can't believe anyone can get toxic megacolon and still think they're well and healthy, I just can't. I was deathly ill with incredibly high spiking temperatures. Maybe they thought they had an infection instead.
That's interesting about
toxic megacolon being more common in Crohn's than in UC - thought it was the other way round. I do agree that rectal inflammation is harder to ignore. Colitis without rectal involvement is relatively piss-easy by comparison, particularly if it's not too severe.
Dx Crohn's in summer of 2000. (Yay )
Tried and failed: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, various diets.
Had surgery Feb '13 - subtotal colectomy with end ileostomy. First thing to put me into remission in 13 years.
Had second surgery 10th July '15 to reverse the stoma and connect the ileum to the rectum. Officially flaring again. The fun never begins.