# Inspirational Story with UC



## 19741 (Dec 1, 2006)

This is my story of how I contracted Ulcerative Culotis and where it is now...I started having some pains in my sides during the summer between my freshman and sophomore years in high school. I was on the high school basketball team at the time and was participating in summer camps in hopes of making the varsity basketball team. It started slowly, with some pain, and some fatigue and it gradually got worse. My doctor originally said that I should take tums to ease the pains and gas. However, the fatigue was unbearable and my doctor said that until he could solve the pain and fatigue that I had to leave the team.I started having blood in my stool and having diahrea more frequently, but I could still attend school and go to practice without any problems. Finally, my doctor wanted to do a colonoscopy during the winter of my sophomore year. I remember waking up and having him tell me that I had ulcerative colitis. I had no idea what this meant, but he said that there were medicines to treat it and that I should be fine. He put me on asocal, a high dose of prednisone and imuran. It took a little bit of time, and the "moon-face" that comes with steroids, but within 6 months I was feeling all better.It stayed this way until I reached college. In the fall of 2005 I went off to the University of Illinois. I had left a girl behind that I had some chemistry with and it nearly broke my heart to leave her behind because she was going to a different school. I would think about her everynight and just wait by my computer waiting to talk to her. The stress caused a flare-up and again I was forced to go on high doses of prednisone. It had gotten worse than it ever had before.I was constantly having to go to the bathroom at all hours of the day, with bloody diahrea. I remember one night where I couldn't get to the bathroom in time and soiled my boxers and sleeping shorts. It was then where I knew I had to get a grip. I ended it forever with the girl and knew that there was no future and that we could only be friends. This helped and with the help of 40 mg of prednisone I got it under control again.I went through the next semester without a problem and through the summer of '06 without problems. I found an amazing girl and we started dating during that summer. Things went really well through the first couple months of our sophomore year, but around october 1, i began to see the signs again. Bad pain, cramping, bloody diahrea. I was on 10 mg of prednisone at the time and hoped that it was just a mini-flare. I told my doctor and he said to go to 20 mgs and see if that helped. It didn't and he raisd me to 40 only because he couldn;t go higher than that. I remember praying to God everynight thanking him for getting me throgh that day and hoping I could do the same tomorrow. I would have to get up and go to the bathroom 6 or 7 times before class and hen rush back afterwards in order to relieve myself. My roomate throught it was strange but wouldn't ask any questions. During game 2 of the world series (this was the night that kenny rogers was caught with the smudge on his hand) my doctor told me to go to the ER in order to make sure it was nothing more serious. There wasn't and he told me to watch what I eat and start using steroid enemas in order to direct the steroids to the source directly. This was very hard to do in the dorms, but I did it beacuse I would do anything to feel better.Around Thanksgiving, I had a horrible moon-face and was embarrsed to go out anywhere in public. My girlfriend was amazingly supportive through the whole thing. I am sure he didn't liked how I looked more than I did, but she was there throughout the whole thing and I will never forget that. My doctor finally gave up on the steroids and decided to try remiade, an IV drug.Things started to get a little better around christmas, but I hadn't started the remicade, simply watched what i ate and tried to exercise. The IV remicade was finally approved by my dads insurance, and for $10,000 a pop I started with the drug. At the time I started, I probably went to the bathroom 2-3 times in the morning when I got up, and 2-3 times the rest of the day. But still not normal.The IV started working within a couple of days. There was less blood, less frequent and less diahrea. I started decresing the prednisone 5 mg every 10 days. Slowly but surely, this drug has worked a miracle on me.It is now the start of August, and nearly 8 months after I started the remicade, I am completely healthy. 1-2 bowel movements a day, no blood, no diahrea and my weight, which was up to 195 beacuse of the steroids, is down to 169. I am in great shape and have no limits on what I eat.I want anyone who feels like there is no end to the hardship to read this and know that there is hope. I don't know how I made it through, but hope and faith in God played a huge role. Please try and be optimistic and know that there are people watching over you and trying to help.Feel free to ask me any questions you might have. I have had so much help throghout my time that I want to give back as much as I can.


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## 20581 (Feb 7, 2007)

Removed.


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## Bvander1 (Dec 29, 2007)

Thank you for sharing your story.My daughter was just recently diagnosed with UC in October. Her story is so similar to yours. She had the "feeling full" feeling after eating just a few bites most of the summer. Sometime in August she started having diarrhea along with cramping. Never said anything to anyone and thought maybe it would go away. Mid September she finially mentioned it to me that there was blood in her diarrhea. Made the 1st of many dr appts. After many blood tests and antibiodics it still wasn't any better. She started getting other symptoms along with D and cramping.Had upper GI test and was taken to ER for dehydration. Still no improvement.First part of Oct got so bad, having hard time breathing, D and now vomiting, etc. went to ER again. Was admitted to hospital and after having colonoscopy finally diagnosed with UC.2 wks after being home started having normal bowels and feeling good again. Decreasing steroids by 10 mg weekly.Day after Thanksgiving started with D again. Dr. upped steroids to 40 mg along with Asacol. About 2 wks after was still having D and vomiting again. Took to ER - yep dehydrated again! More fluids.Potassium level low again too (Like in the hospital). As of last week still having D, but seems to be getting a little better, but potassium level is still lower than the normal range. Had another blood test over the weekend to see what the level is at now.Right now on 40 mg prednizone, 4 Asacol tablets 3 times daily, and 40 mg potassium pills.Will this ever end?She is in her senior year of high school. Isn't it suppose to be the best year of her life? Not!We do have a wonderful community and family support and feel she will get through this chapter in her life.If anything good comes from something as bad as UC is that she is now decided to go into the medical field in college. Maybe she will find the cure much needed for UC and other IBS/D that is so badly needed for everyone else that suffers.


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