Hi everyone. My name is Casey, I’m 21 and live in Florida. I took a lot of pictures through the last year of my surgeries and decided to share in hopes of helping someone going through the same situation. Feel free to ask questions or just leave comments!
I was diagnosed with ulcerative colitis in Jan ’07 when I was 19. I was put on Asacol and did not respond. For some reason I missed the learning period of being able to swallow pills and was chewing them unaware that they were a time release medication. About 2 mo. later I was hospitalized for a month to get the first flare up under control. They took me off Asocol and started me on IV steroids and Cyclosporine. I had many blood transfusions because I was losing a lot of blood in my stool. It was a very tough month, I was vomiting everything I tried to eat and lost about 30lbs. I was still taking cyclosporine and prednisone 11 mo. later when I decided to go through with surgery.
I’m in the middle…This was after just 3 mo. on prednisone and cyclosporine. Not only was my face huge, but I had hair growing on my face that I’d have to shave and my arms were like a gorilla’s. It was very hard for me to be a normal 20 yr. old. Not only did I have to keep tabs on where the bathrooms were at all times, but I was very self conscious about my new appearance. I never really got into remission from my first flare up. Eventually I got tired of the medications, and was taken off cyclosporine and then put on Imuran.
After meeting with a surgeon at Shands at the University of Florida, I had high hopes that he could do a colectomy and have a j pouch and I would be fine. All he said was, you’re young and thin, you’ll heal well and never have pain again. (I should’ve known better) I had a colectomy in Jan ’08 just one year after I was diagnosed. Surgery lasted 8 hours and there were many complications, he accidently cut a piece of my small intestine and in order for it and the j pouch to heal he gave me a temporary illeostomy. I wasn’t happy or prepared.
I never completly got used to the ostomy; I was constantly worried about the noises it made and if people could see it through my clothes. Emptying it in a public restroom was very difficult for me and changing the bags took practice. I did have 10 mo. to do so.
After the first surgery I was readmitted a mo. later for dehydration and increased output. My system was not used to having only a small intestine and things were moving through me way too fast. They put me on codeine and lomotil which helped a lot. I was told takedown could be in March and only had to wait. When I got home, I was having discharge and went to my local doctor who found I had a recto-vaginal fistula. I later learned a fistula can be a major red flag of crohns disease to a surgeon. Needless to say the takedown was cancelled and many barium tests and CT scans were done until eventually the fistula healed. My gastroenterologist decided the fistula was a complication of surgery and we could go ahead with the takedown In Oct. The good thing about the ostomy was it got me healthy again. I was able to gain about 40 lbs and eat almost anything I wanted.
They closed the ostomy, but left the incision open to prevent infection. Never told me, but they are the professionals. 2 days later they tied the sutures to close the hole. Very painful, hopefully I will never have to go through that again! All they could give me was morphine for the pain while the resident was closing it. Can I just say morphine wears off after about 7 mins and this took 30 mins!?
They took the NG tube out the day before I left. As soon as they freed me from the IV I had to go into the bathroom for a sponge bath. (If you’ve been there, you understand) They made me eat and have a BM before discharge.
Not too bad of a scar. I got my tattoo after the first hospitalization. I’ve always loved stars and wanted a green shooting star to wish for hope and health. Didn’t end up helping, but that’s the story.