I was diagnosed with ulcerative colitis when i was 12 years old. For the first month i thought it was period so i didn't tell anyone i was bleeding but at the end it was really severe and i couldn't stand it anymore the pain got worse so i went home early and i told my mom i was bleeding. I got lots of medicine but then i went to the hospital and there they told me i was diagnosed with inflammatory bowl disease Ulcerative colitis. I couldn't eat for 2 weeks. They gave me so much medicine and 2 blood transfusions. After that i was fine for 2 years but i stopped my medicine because i thought i didn't need to take it anymore but i was wrong. My colon flared up and it got so much worse. I didn't know i had to take the medicine for the rest of my life, i regret it so much now. I missed so much school like for many months. I got steroid dependent and i tried remicade but my flare was so bad remicade didn't even work , some medicine they hesitated to give me cuz i was too young. The final decision was surgery, i cried a lot, surgery to me was scary. All i ever hear is the word surgery, that i need jaw surgery and they found a new problem in my stomach not related to the disease but it was something that i might need surgery for too, they found it while i had an MRI.
Then this old surgeon who was really nice told me that the pain i was having could go away if i have the surgery. So I decided that yes i will have the surgery. On Sep,2.14 the surgery was done and i had an ileostomy on the right lower side of my stomach. When i first saw it i was so scared its not normal to have you organs cut out and out of your body. I had the ileostomy for a year i had irritations there a lot so i took Benadryl everyday. The pain went away like the surgeon said and i felt so much better but it changed my life. I didn't want to go to school cuz the bag made so much noises and i thought people might make fun of me for that, my little brother kept asking whats that sound, i cried a lot over that. Then i didn't really mind over the sound but i had home schooling. I tried to go back to school but I couldn't i would have pain in my back if i sat more then 2 hours. So i sticked with home schooling. One year had passed and the surgeons asked me if i wanted the reconnect surgery/jpouch and i said yes cuz I didn't want the bag no more. So i was getting ready for the reconnect surgery and finished all the tests, MRI's, and after i was done with the pre surgical testing i had a blockage.
I went to the ER and they couldn't fix it so they said i have to take surgery for it, it was some where in May, and i did the ileostomy was on the same place, but i cried so badly. I waited one year for that surgery and then i had to wait 2 more months. So i did then it came the time for my reconnect surgery. I had the surgery on July 22 and when i woke up in the surgery room i touch my stomach and i still had the bag. I was really upset if i had another disappointment i would have gone mentally crazy. Then a lot of stuff happened i couldn't eat anything so i went back to the hospital and the skin around my stoma i had a lot of irritation and i couldn't handle it. The whole month i was stuck in the hospital. Its as if i live there. Then the surgeons decided to have the last step of the reconnect surgery sooner.
So i had it on Sep.23,15. There is small whole on my stomach that they said will slowly heal but it looks so scary to me. And i have to go to the bathroom a lot and my bottom burns a lot. And now im here and for some reason im not happy idk why. I thought i would be happy if they took the bag away but i dont feel normal. Im asian and eating spicy food is like a daily thing but now i cant even have that cuz everytime i do my butt burns alot. I wish i was normal. Now im still 14
Sorry that this is so long TT^TT