This is going to be really long, but reading it will really help me out and I would appreciate it so much! Please answer any of my questions I have if you can and leave any advice.
My name is Katelyn. I’m 17 years old, 18 next month. I was diagnosed with Ulcerative Colitis early January of this year. I’ve been so embarrassed by this decease that only family and really really close friends know the whole story of it.
I’ll start off on how this all started.
I was 15 when the first signs started. We had no idea of any of this until I was 17 by the way. At 15 I was having bloody stools in the toilet and was freaked out. I kept it to myself for a year! I was so scared/embarrassed. That was it though. That was the only first sign and my life was still normal and I had no complications. Not sure exactly how or when I told my mom about this but I was 16 when I finally went to my doctor to see what was up with the bleeding. The appointment lasted 1o minutes. She said I had a tear and to take that powder stuff to help soften the stool. It helped and I was all good for a few months until it all of a sudden came back. I refused to tell my mom about it coming back. There went another few months of bleeding. Still that was the only symptom. It wasn’t until November when I started getting weak. I was a counseling aid at my high school and I had to constantly walk up and down the stairs several times an hour. It came to a point where I couldn’t make it up without stopping for a break to catch my breath. A few weeks later I couldn’t walk up those stairs without getting dizzy and almost blacking out. This happened at home too with all the stairs in my house. In December my family got health insurance again and I was able to go see the doctor. By that time I was so cold all the time. I bundled myself up in layers and sweaters. Even went to bed with gloves on because my hands were so cold. I turned out to be severely anemic due to all the blood loss. symptom #2.
After Christmas it went all down hill from there! At school my stomach wouldn’t shut up with all the gurgling sounds. I knew I wasn’t hungry and I was embarrassed by all the weird looks. Didn’t help that I was new at the school either. Weird new girl who’s stomach is always making weird noises. The next big symptom was the small cramping pains that would come and go. Didn’t hurt, just uncomfortable. I slowly started losing my appetite as well. Parents took me to the ER and they just gave me fluids and pills for the cramping and sent me on my way. Didn’t help at all. They did give me a cat scan on my stomach. Saw some inflammation and told my parents to call a GI doctor. I was also given asacol. I refused to take it because I couldn’t swallow the pills. I would throw it up while trying to get it down so I would hide the pills my mom would give me if she left the room for a minute. We couldn’t get an appointment with a GI doctor. We left messages but they just were not calling back. After the ER I didn’t go to school because I was getting sicker and sicker each day. In one week I lost my entire appetite, lost 10 pounds, couldn’t stand up or walk or I passed out, I had to crawl to the bathroom, had to go to the bathroom 20-30 times a day and what came out was not normal. Pure thick blood basically. I wasn’t eating so it wasn’t food coming out, I also had the most horrible cramping pain on my lower left side. If I sat PERFECTLY still I would be okay. If I moved a centimeter I would have to go to the bathroom and be in so much pain, oh I also had a ton of cramping while going the bathroom. Not even kidding. I would be holding my stomach and crying. I slept downstairs on the floor..I couldn’t sleep well on the couch and the closer to the bathroom the better because I was woken up so much. Finally we got a call on a Friday from a GI doctor. I went in for an endoscopy..when I learned I had to be awake for it I refused to have it done. I wanted to be asleep. My parents were not happy with me. I didn’t care. Monday morning I went in for a colonoscopy and before I was awake the doctor made arrangements for me to go to Dornbecher right away. That’s a children’s hospital here in Oregon. I was 17. You have to be 18 to stay at the hospital I was at already. I have to admit..I felt so good with that anesthesia after I woke up..I was not in pain and was actually able to sleep well on the drive to the hospital. I was on treatment with steroids and lipids. I kept losing weight in the hospital. lowest was 104. I’m 5’7 so I looked like a tall stick..it was gross. I was in the hospital for 2 weeks. Missed 4 weeks of school. I went back to school with chubby cheeks. I hate steroids. so much.
Currently I’m doing fine.
Last semester of school was bad. I don’t know what happened but I had sharp shooting pain in my lower left side. Same spot as cramping from UC but I swore it wasn’t. Treated it as a kidney stone. It wasn’t one. Ultrasound proved there was nothing there. This pain lasted threw the rest of the school year. Viacodin was the only med to help me sleep with this. It was a level 10 pain the whole time. It would last at least 3 days, be gone for 2 days then it was back and that cycle started again. Here’s the thing..I know stress causes flare ups and pain..I absolutely HATED my new school. Could all that stress have caused so much pain? After the last day of school I never had the pain again..be honest..Could the pain be from the stress of going to school? I had no friends at that school. I ate alone at lunch all school year, I was scared I would have to run to the bathroom and symptoms were hard to adjust to while being at school and the people snickering around m e when my stomach made noise, which got worse with all my medications.
I stopped taking Asacol. Gave me horrible knee pain. I would wake up crying. It was a mixture of them feeling like they were on fire/being hit with a hammer. I’ve never actually felt those in real life but I imagined the feeling of that.
At this moment I have been doing fine. I AM SO BAD AT TAKING MY PILLS!!! I feel great and honestly don’t take them..sometimes for weeks at a time and then I’ll randomly take them. I hide them from my parents because they think I take them. Sometimes a day goes by and it’s like I don’t have colitis. Please scare me into making me take my pills. I know I need them but I don’t feel the need too. Plus I am so tired of yogurt and apple sauce. Only way I can take pills. I put the pill into a spoonful of either and swallow. Don’t feel the pill at all going down.
One more thing. Some friends accuse me of using my Ulcerative Colitis to get out of things they think I don’t want to do..that hurts a lot. It’s not my fault I have this. I get so tired that I just need a nap or to sleep all day. Some times I feel all achy or my stomach just feels upset. Too much excitement gets my body all worked up and hurts and I need to lay down. Too much stress makes me hurt and a lot of bathroom visits. Any advice on this topic?
Sorry this was so long. I also like to write and I needed to get this out.
Submitted by Katelyn M. in the Colitis Venting Area
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