Joy Takes Center Stage

Ashley is 14 years old and loves to sing, read, ride her bike, spend time with friends, and see Broadway shows. She performs in school shows and an a cappella group, and shares videos of her performances on a singing account. Ashley shared her experience about living with ulcerative colitis, a condition causing ulcers and inflammation in the large intestine, which you can read below.

BTL: What do you wish other people your age understood about ulcerative colitis?

A: It’s a disease, but with the right medication, I can live my everyday life normally. I also wish people understood how hard a flare can be. Sometimes I can’t leave my room or the bathroom. I miss out on seeing friends and learning at school because I can’t go anywhere.

BTL: What does a flare-up feel like for you?

A: My stomach hurts, and I feel nauseous. Sometimes it feels like I’m being stabbed in the stomach. My ulcerative colitis is severe, and a flare can be really painful.

BTL: How has ulcerative colitis affected school for you?

A: My last flare was when I was 11, in fifth grade, and I missed about half the school year. My two main teachers taught me lessons over a Chromebook while I was at home. I could keep learning, but I didn’t get to see my friends.

BTL: Has ulcerative colitis affected singing or performing?

A: I’ve never had a flare during a performance. In fifth grade, I chose not to do shows while I was dealing with a flare. I’ve always loved to sing, but at the time I didn’t feel up to it.

BTL: What does singing give you, especially when living with ulcerative colitis feels difficult?

A: Singing gives me an escape. When I sing, I get a break from everything else, including schoolwork and whatever is going on in my life. It makes me happy.

BTL: Do you ever worry about having another flare?

A: I’m happy with how I feel now, and I try not to think about it all the time. But I get infusions every six weeks, and I sometimes worry that the medicine could stop working. That happened during my second flare, even though I was already getting infusions. I’m scared of missing school and time with my friends again.

BTL: What is an infusion day like for you?

A: I don’t go to school that day, and my mom gets me a Starbucks Pink Drink. I make sure to drink plenty of water beforehand because it helps the nurses find a vein. I know the nurses now, and they put on numbing cream before drawing my blood. Once the medicine is ready, the infusion takes about two hours.

I still get nervous when it’s time to take the needle out, but I prefer infusions to shots in my stomach or taking pills. This medicine has been working for me, and that helps me feel better about going.