I have fistulating crohns and its gotten to the point the treatment is not working and they're suggesting surgery 😭😭

honestly very scared im only 18 and just wondered if anyone else has had to go through surgery before bc I am not sure what to expect / how it'll affect me


Infliximab • Type: Injectable

Crohn's Disease (IBD) Inflammatory Bowel Disease


Azathioprine • Type: Oral

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  • s.jco


    Hii, I’m 21 now but right after I turned 20 I also had really severe fistulizing Crohn’s. It was too far gone that although the Remicade was helping, it wouldn’t fix anything and so I did have surgery. I had a bowel resection, part of my small and large intestine, as well as a temporary ileostomy. And I’ll be honest it sucked. It was really hard and the recovery is rough. But lemme also tell you that a year later, I still have the ostomy bag and I’ve never felt better. That surgery fr gave me my life and my health back and I wouldn’t do anything differently. I’m back in school and I mostly eat whatever I want and I have a boyfriend and friends who are so supportive. Listen, Ik it’s scary believe me especially so young but I can almost 100% guarantee that if surgery is necessary, it’s gonna save your life and put you back on your feet. Best of luck, I’m on your team💕

  • bboyonline


    hiya, 19 y/o here. i had resection surgery for multiple intestinal strictures in march ‘21 - i now have an ileostomy. it’s been 10+ years with crohn’s and surgery was introduced as a last resort after trying every medication available. it was very sudden for me and i barely had time to process until after the fact. i know surgery might feel far-fetched or even impossible for you right now, but you can do it. im not sure the exact details of your surgery or crohn’s (feel free to msg me) but i’m sure your team wouldnt suggest surgery if it wasn’t appropriate i would suggest asking your doctors for an explanation that splits surgery itself into three stages (pre-operation, surgery and recovery) to help you understand and stop it feeling so surreal. my surgery has left me completely pain-free after so many years of struggling with my symptoms. i’m able to live a bit more for myself now. i really do wish you all the best, and if you need anymore help feel free to reach out. - han

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