Was on pred near continuously for one and a half years - every time I stopped it completely I'd be back in the hospital on IV steroids a few weeks later. Then it got to a point where I couldn't even go a few weeks steroid-free. And, finally, even drop below 20mg. I booked at surgery at that point and went back up to 40mg pred for about
a month until I had it.
Steroids were almost certainly the only thing keeping me from emergency surgery. Every time I went in I was acutely ill and I had toxic megacolon at least once (and possibly more than once - my hospital weren't exactly good at keeping me informed). On the other hand, it was impossible to see how I was ever going to get off steroids. By this time, I'd failed Remicade, Humira and methotrexate and didn't have the motivation (or possibly the time) to spend months and months waiting for referrals and trying experimental therapies.
I reckon I got off the 'roids just in time, tbh. Still had a horrible withdrawal after surgery, but I put up with the brutal fatigue for a few months - I just wanted every single drug I had ever been on 100% out of my system.
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.