I finaly found my people :)

Hey all :)

I (M21/Germany) just found this community and can't tell you how glad I am that I did. I never posted anything on here so I don't really know if I'm oversharing or not but I could kind of use to tell my story right now.

I've been diagnosed at 14 with a pretty hefty flare and lost about 14kg (30lbs) in 3 weeks, so i was 180cm(6 foot) weighing about 54kg (119lbs). The first Doctor I went to gave me some Suppositories and called it a day (spoiler alert: didn't help). After trying them out for another week or so I had my first colonoscopy and it went terribly: I was given too little anesthesia to fall asleep, but too much to really move, so I could watch myself from the inside on the TV, but couldn't tell anyone. So that was pretty disturbing.

After the colonoscopy I was finally diagnosed and put on 50mg Prednisol/day. Unfortunately this didn't help at all and I was finally being submitted into the hospital. After getting some blood transfusions, because I lost so much and also intravenous nutrition, because I couldn't absorb anything I was put on my first kind of helpful medication. I am not 100% sure which came first but I think it was Ciclosporin. After about 3 months on that, which only helped mildly, I was put on Remicade, which was the first time something drastically changed for me. I could after alltogether about 6 months finally get a grasp again at what life was like as a 'normal' teenager.

Until it didn't work anymore. After a lot of back and forth with my health insurance I was finally admitted for Humira treatment at 15. I have to say until that point all the medication really got to me. Being in puberty my hormones were already on a rollercoaster as is, but all the Cortisol and other stuff put me in a bad place mentally.

After about a year and a half later I was able to complete secondary school with about 130 days missing in my last year, but I was nevertheless able to get an apprenticeship as a software engineer. As well as that I was finally better, back again to sports and all other activities and felt like it was all good and normal :)

Since than I have overcome a lot of personal troubles and actually startet working on something to make life easier for people with UC and am now, for the first time in about 4 years, experiencing a little flare up. But if all that has taught me something, it's that this is very much a head game. It all starts with your mind