Im 17 years old and was diagnosed with UC in june 2006. It started off in the lower left part of my colon and wasnt severe, i was put on asacol (6 a day) and two asacol suppositories at night. This cleared it up nicely for about
two weeks, then my symptoms suddenly started up again, i was put on predsol enemas at night and was on the asacol medication. I used these for two weeks and they worked like a miracle, but the day after i stopped using them my symptoms came back. I went back to clinic and they put me on stronger predfoam rectal foam, and prednisolone tablets aswell as asacol, they replaced the asacol suppositories with predsol suppositories. My symptoms didnt die down and after a few weeks on them i went back to clinic. They then put me on balsalazide (9 a day), prednisilone (6 a day, then raised to 12 a day), rectal foam (at nigt), suppositories (1 in the morning), i was like 25 tablets a day. After a month on them, my symptoms were still really bad and i couldnt cope. I was admitted into hospital around three weeks ago and was put on IV hydrocortizone (400mg a day), i also had become anemic because i had lost soo much blood, i was given 3-4units of blood. After a few days on hydrocortizone and there was no change in symptoms, i was put on cyclisporin for 4-5 days. this started to make a difference but i was still going toilet 10-15 times a day. At this point they did another sigmoidoscopy and they could only go so far because he didnt want to puncture my colon. My UC had spread further than he could go with the camera. I was told this was quite rare. The next day a surgeon came up to see me, he looked at my notes and told me i had steriod resistant colitis and told me i would need surgery, he explained the operation to me and what i would have after. He wasnt supposed to be operating but he came in the day after to do my operation. I had most of my large intestine removed and had an ileostomy and now have to wear a stoma bag on my belly. In the first 24hours after the operation i felt a million times better than what i did before the operation. I was discharged from hospital last wednesday, a week after surgery. I am still very achey and weak but feel better and on the mend. It has been a very emotional time for me, i dont like having a stoma and a stoma bag but its better than having UC.
I have always asked myself "why me"? and have always wanted to know the cause of UC. Nobody in my family has ever had anything like this. All the stories i have read about others peoples UC, they have been very fit and active and had a healthy diet and do regular or excessive excercise, im a footballer and have a very healthy diet, never smoked and never done drugs, always been active from a young age. Ive played football since i was 5, and played at a high level since i was 11.
I hate all of this and i cant get my head around it :( i dont know how to take this, its all happened so fast an gets me down really bad. Because i was really ill the surgeon couldnt do the two stage surgery, so to be reconnected i have to have three stage. I hate hospitals, operations, and all that and dont want anymore operations but hate having a stoma bag. When i read about the J-Pouch surgery, it says the pouch is made from the small intestine but my surgeon left about 8inches of my large intestine :S does anyone know why he did this? I have no idea. Please help me i really dont know wat to do. Everyday feels like a struggle.
Thank-you for reading my story and please leave me a comment back with your story and answers.