Hey everyone my names Jason, I am now 20 years old.
I was diagnosed with ulcerative colitis when I was 14 years old.
It was my freshman year in high school and I was playing football that fall. It was all going great till about mid October or so. I started waking up 10+ times a night to go to the bathroom and I was noticing blood, diarrhea, and stuff like that. At first I thought it was just a flu or something so I let it go for a few days. Then my mother started to notice how many times I had went and got nervous and stuff. So we went to the local doctor that told us that it was something not to be very worried about it will go away… well it didn’t, so we went to the bigger town 45 miles away and they said I needed an endoscopy not a colonoscopy at the time. So we did that and he determined that I had Celiac Disease. So I ate gluten free meals for like a year or so and went back saying we weren’t seeing any results. So then he did the colonoscopy and found I had ulcerative colitis. Not celiac.
So then I started my journey on all these different drugs to see if i could stop the flare ups. We then decided to go to the specialist about 2 years ago or so and they said I should start remicade immediately, after the colonoscopy so I then started that for about 6 months no results…
So we said, we are done with this and went to the Mayo Clinic in Rochester, MN.
They did everything in 3 days (colonoscopy, endoscopy, and a bunch of other blood tests ect.) They were great there, this was about Feb. 2011. 6 or so years later… its been a up and down 6 years. They then told me there is two options: surgery or a diffrent medication. Well I don’t want surgery at 20 years old. So I am still on Azathioprine and Lialda as of now to see if these help but I don’t know if they are…
I go in for blood work every 3 months to make shure my liver and stuff is functioning right. UC has changed my life drastically, at age 14 I was all about sports but then i got very sick went from being 150 pounds down to 120 or less, looked like a ghost.
I was extreamly embarrassed.
Going to school having to time my whole day around where the bathroom is, can I make it? I’m not embarrassed to say it anymore but I haven’t made it multiple times.. I always carry extra clothing just in case. But my whole High school career 9th-12th grade I didnt play any of the sports I wanted to (football and wrestling) in fear that i would have a bowel movement in front of everyone. it was really hard on me. But hey there are worse things right? Hanging out with friends was the hardest thing. Having to go to the bathroom at the worst time.. most of my friends would understand that i have to but it still hard on me. I love to snowmobile, and to be honest it seems like its the biggest stress reliever for me. When I ride my sled I seem not to have to go to the bathroom as much I usually can make it to my destination before stopping. I hate going on big trips because I have to know where the next town is everytime.. Do i go before or don’t I. UC made me change my whole plans up. I wanted to go to college with my buddies but i can’t figure out what i can do that allows me to use the bathroom as many times as I do. I hopefully am thinking about going to the local tech for power sports technology to work on small engines. I am currently still living at home because it will be cheap if I go to college here. I have changed alot in that 6 years. I still go to the bathroom quite a few times a day, but I will live with that.
Well I think that’s about all I have to say. Thanks Alot.
Submitted in the Colitis Venting Area