I’m 23, my name is Jayson I was diagnosed with Ulcerative Colitis when i was 20. It has been the hardest thing i have ever dealt with.
Some more about me:
I ice race and drag race.
My Colitis Story:
My first couple years of UC were pretty mild. But the last 1.5years have been miserable. It got extremely bad i was in the bathroom 30 times a day, sleeping only 2hrs at a time before a bathroom trip. in constant extreme stomach pain, worse of witch was having a bowl movement. couple times i managed to pass out on the toilet from the pain and woke up on the floor. i became anemic from the blood loss. was hospitalized more then once for dehydration. lost 30lbs putting me at 134lbs the lightest i have ever been since 9th grade. i couldn’t eat or drink with out instant pain. then the hip and neck pain… my right hip became so inflamed i literally could not walk with out a walker or crutches. yea, at 23 i was using a walker. this really killed my spirit. my life went dark i pushed away everyone in it. I had no energy i just wanted to sleep. but i tried i never gave up. I’m a tool builder at a machine shop and people counted on me to be there. i missed work only when i couldn’t walk. i also ice race dirt bikes, have been for 13 years and it was the only thing keeping me going. at my worst i was still in the shed wrenching, trying to convince myself i could still make the up coming season even though my hip was so bad I couldn’t start my own bike or stand at a track all day in full gear with only a few bathrooms in sight. i missed the first race. My UC was at its worst, it was the day before the race i was still trying to get ready, i was getting parts and had an accident in line at the UPS store. at that moment i realized i wouldn’t be able to race, my passion was taken from me. It was one of the saddest days I’ve faced in my young life.
In all this time my i was in between doctors, my family doc was helping as much as possible. they had me on every drug known to UC. my doc at MAYO clinic was trying to get me to do surgery but i wanted a second opinion. At one point they put me on Remicade, which of course killed my immune system, within three days i got double pink eye, and ear infection, and the flu..on-top of my horrible UC symptoms and seasonal allergies….i wanted to die.
My fam doc put me on prednisone witch has always worked for me and i got to race the season.
i finally got a GI doc in my area, he has me on 40mg of pred and pentasa… witch has finally got me in full remission for 2 weeks now. But i don’t have my hopes up… I fear once I’m off the pred next month it will all come back just like it does every time.
UC has made my life miserable, I’m not going to sugar coat it. for 1.5years i wanted to die. no one in my life understood the misery i was in nor did i expect them to. but non the less it made it hard. ive been feeling good for 2 weeks now. its crazy though i still haven’t fully snapped back. i still feel changed to my home and the toilet in it. guess its just a mental thing i have to get past. idk im still scared.
But it’s so nice feeling better this past 2 weeks. i wake up everyday feeling happy and existed, I’m seriously sitting here in tears because I’m so relieved. I just hope the worst is behind me.
And I’m sorry this story was so negative i just needed to vent its been a dark year and a half for me.
written by Jayson
submitted in the colitis venting area