With flares that severe, it kinda sounds like you're on a one-way path towards surgery. I'm surprised you pull out of them.
My Crohn's was one long, continuous flare up for 13 years, which gradually got worse and worse. I had pancolitis with terminal ileum involvement. No fistulas. It started off very mild and stayed pretty mild for about
5 years. Then I fell ill with brutal fevers. Like, really brutal: I'd be lying in front of a heater with two sweaters on and still shivering violently.
Eventually the brutal fevers passed after a few weeks or months, but I was never the same afterwards - my baseline had got worse. And over the following years my baseline continue to get worse. I'd be semi-stable for a year or two, the brutal fevers would come back for a few weeks, semi-stable again for a while, etc. I was systemically ill in a way that I wasn't in the early years, e.g. severe anaemia, fatigue, fevers (I still got low-grade fevers in between the periods of high fevers).
I did lose weight, but gradually rather than dramatically. During really bad periods, I craved cold drinks and so probably kept up my calories through fruit juices and milkshakes. I did end up really underweight, but it happened over a period of 3 years or so.
I was never in remission, no matter what meds I went on. Took a course of pred about
once a year on average. That would make me feel better for a while, but the symptoms would quickly come back.
In 2011 the sh!t really hit the fan and I developed toxic megacolon. Ended up in hospital for nearly 2 weeks; the hospital fumbled the ball at first by thinking I had gastroenteritis (lol, as if I'd go to A&E for a bout of food poisoning). My CRP was 350. My temperature the night before I was admitted was 40.5C. (It had gone down by the next day; it was spiking very high at night and that was the highest point it reached.)
I've never been the type to have 30 BMs a day - I think around 15 a day has been my maximum, no matter how ill I've been.
Oh yeah, and the 9/10 abdominal pain, which led me back to A&E at least 5 more times. Excruciating and unbearable. And always accompanied by fevers and feeling extremely ill. IV steroids and morphine would pick me up, I'd do okay on oral pred for a couple of months; relapse and end up back in hospital. After about
18 months of that cycle I booked surgery. I was never getting into remission; the only 'remission' I was experiencing was a completely false, steroid-induced, one.
I don't hear of many people with IBD having bad fevers. I used to sometimes wonder if I had a hidden infection or abscess, but nothing was found over the 7 or 8 years I was having them for and eventually I just put it down to the Crohn's and having a toxic colon, since there seemed to be no other cause.
I also had a stricture which made life interesting at times with partial obstructions.
Hope you don't mind hearing from somebody with Crohn's, but I guess I felt like talking about
PS: My surgeon wanted to do surgery the very first time I was admitted, but apparently my GI talked her out of it, wanting to give the Remicade more time to work (it never did).
Dx Crohn's in June 2000. (Yay )
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)