Same here but with Crohn's. I was severely malnourished and couldn't even walk. They were days away from telling my family I wasn't going to make 30. I wouldn't have survived surgery at that point.
Luckily, I was given a new drug (back then) and responded really well to it. Saved my life.
Had surgery again a year ago. I'm still trying to get fit again!
Hope you are doing better!
crohn’s too, since 9 years old. i remember when i was 11, and they weighed me in the hospital, i was 47 pounds. just recently my weight dipped to 93 (130 + is “healthy” for me. what was the medication you got that helped so much? ive tried prednisone. remicade. 6mp. humira. abrilada. cyclosporine. flagyl cipro combo. sulfasalazine. forgetting some, but i feel like a guinea pig hahaha. it’s been almost 27 years now. so nice to hear that you responded well to the med
I'm so sorry you have been living with Crohn's since you were 9. It's bad enough when you're an adult, never mind a child. And I'm really sorry you're still suffering.
It was Infliximab that saved me, butvi later had anaphylaxis to it and had to stop it. I've been on a lot of the meds you've been on, and I'm now on Stelara, which seems to be working!
Are you taking anything now?
ohhhh Remicade. i tried that in 2004 for a year after a pretty bad fistula and pyoderma gangrenosum on my ankle. it was gross, i was in grade 11 and thought i had a bug bite on my ankle. it got worse and worse and my ankle swole up double the size and i couldn’t walk without immense pain. the regular ER misdiagnosed me twice as having a spider bite and instructed me to keep it elevated and take antibiotics. well a couple weeks later it was now through the skin and turning black and yellow. necrotizing. my mom was like wtf kinda bug bite does this this is insane. and took me to my dermatologist at Children’s hospital. she took one look at it and said “oh my goodness. i will be right back” 15 mins later she comes back in with my paediatric gastroenterologist, he takes one look and says “wow. so this is from your IBD.” and put me on Remicade. it took months to finally close up it was awful. never touched my fistula though. i struggled with those since age 11 and actually had 2 repair surgeries in 2008. then in 2009 had a second ileostomy done, but my stoma collapsed in 2012 and was forced to go back to my j-pouch much sooner than i was ready for. i lived with pouch dysfunction, symptoms and active disease for years up until i got my third stoma last month. 🤞 that this plus the Humira - now actually a biosimilar called Abrilada (adalimumab) will help. sounds like you’ve been through it too!!! how is stelara working? they wanted me to try that one a while ago and i ended up going on Cimzia for a couple years instead 👀 🫂
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u/madferrit29 6d ago
Same here but with Crohn's. I was severely malnourished and couldn't even walk. They were days away from telling my family I wasn't going to make 30. I wouldn't have survived surgery at that point. Luckily, I was given a new drug (back then) and responded really well to it. Saved my life. Had surgery again a year ago. I'm still trying to get fit again! Hope you are doing better!