I am 19 years old and am currently an undergraduate student at Bowling Green State University in Ohio. I was diagnosed just before finals week of my first semester in college, about a year and a half ago now, and I have been riding on the UC rollercoaster ever since. I like to read, watch movies, hang out with my friends, and I used to like to travel. I don’t travel much any more because it always seems to upset my system; by the time I feel ready to do stuff, it’s time to leave.
Depending on the week: none to diarrhea (occasionally bloody), frequent trips to the bathroom, nausea, and stomach cramps
My UC Story:
UC has completly altered my life. I used to think that one day I might be a world traveler but now I’m afraid to leave Ohio from fear of being away from my doctor in case of a flare up. I still, after a year and a half after diagnosis, two different doctors, two colonoscopies (which I hate almost as much as my UC) and five different types of medicine, do not believe I have my UC under control. My family has been so supportive and understanding throughout this past year and a half. They let me whine and complain about how life isn’t fair, and they never judge me when I cry, which seems to be more often since I’ve been sick. I was the first person in my family to get UC and we had no idea where it came from until a cousin on my dad’s side was diagnosed around September of last year. I think what frustrates me the most is that UC has become a huge impediment in my life and prevents me from doing things I want to do. This comin g summer, I was supposed to study abroad in Spain. I had the green light from my doctor, until he took my off prednisone. I immediately got sick again and was told Spain was no longer an option. This devestating news made me stop and re-think everything I wanted to do with my life. I am a political science major with an emphasis in international relations, but how international can I be if I am afraid to leave Ohio? I am afraid that everything I wanted for myself is gone; that now I am permenanently tethered to Ohio with the IV that will soon be pumping remicade through my system. Another reason I have had to re-evaluate my life plan is because of how my body reacts to stress. For some reason, my UC just doesn’t seem to be able to handle it. Take today for instance, the Sunday before finals, I have been to the bathroom 4 times between 10am and 1pm. How do I stop this? What can I do to help combat the stress, and consequently, the trips to the bathroom? Even though I hav e been diagnosed a year and a half now, I still feel as though I know very little about UC. Do certain diets really help? How can I become medication free? How do I stop UC from dictating my life?
Where I’d Like to be in 1 Year:
Prednisone– ahh prednisone, we’re old friends. I’ve been on the off prednisone 3 times since 2010. It worked like a dream for me. I was almost never sick while I was on it. I hated having to get off of it, but the side-effects make it impractical for long term use
Lialda– I’m up to 4 pills a day and I don’t really think its doing much of anything except for costing me an arm and a leg.
Mesalamine enema and Canasa suppository–not really sure these two medicines serve much of a purpose either except they make sure I keep my bathroom floor clean. I thought they were working in the beginning but now I’m not so sure
6mp– I’m taking this in preperation for Remicade which I’ll be starting in June. It does help somewhat with the symptoms, but not to the extent the prednisone did
remicade– fingers crossed this the solution I’m looking for! after this it’s surgery.