By Alison Feller, as told to Candy Schulman

When I was 7, I was on a family vacation, living my best life. Or so I thought. I wasn’t sick – until I was. There were no symptoms that indicated Crohn’s was coming. I was losing weight, but I was a super active kid. Suddenly I started throwing up a lot. I had a fever. Back home, my dad took me to the hospital for all sorts of tests. A specialist did an endoscopy and saw all the inflammation in my digestive tract.

My family didn’t know how to navigate my Crohn’s diagnosis. We’d never heard of Crohn’s and learned it would be a chronic illness I’d have forever. I thought my parents would figure it out. All I cared about was getting better and going back to dance class. As long as I could dance, I was happy.

I’m lucky to have two wonderful, supportive parents. We met with doctors, and they put me on oral prednisone to stop that flare. In early adulthood I had to manage my illness, learn to advocate for myself, call doctors, get authorizations, and push for what I needed in terms of treatment. Crohn’s would flare once a year. Steroids calmed it down. When I was older, it was harder to treat. I was put on biologic medications. Over the years, I’ve been on a large cocktail of medications, trying to find that perfect one.

Living in New York, I had a dream job as editor-in-chief of Dance Spirit magazine. I was the sickest I’d ever been and had to go on medical leave, which lasted 2 years. I couldn’t even leave home. I was depressed, not myself. I was in the bathroom up to 40 times a day, so I had to be near a bathroom at all times. It’s not glamorous or fun to talk about. But it’s my life. I do the best I can on every day.

Crohn’s caused me to make a major change. I had to make decisions best for me, my family, and my health. I eliminated commuting to an office and someone dictating how many sick days I got. I needed freedom and flexibility. Sometimes I had to do my work in the bathroom. I could do that if I worked for myself.

When I’m flaring sometimes, I can’t run at all. I always plan runs around restrooms, bushes, or woods.  Living in a city was challenging, so I moved to New Hampshire, surrounded by woods. One of these days I’m going to run into the woods and find another person with Crohn’s there in an awkward situation. 

My quality of life with Crohn’s is better here. Running is even more enjoyable now that I don’t have to worry. People like running with me because I can tell them where all the bathrooms are. I’ve learned to adapt. I will always be a runner, even on days when I can’t run. I bought a treadmill to help me when I’m sick.

Running is my favorite thing, so I made a career out of it on my podcast, “Ali On The Run.” Every week I interview runners about why they love the sport, how running makes them feel, and what they love doing when they’re not on the run.

My flares vary but come at least once a year. They can last a couple of weeks or a year. There is no consistency. I run however much I feel like running. If I see a race that I want to run, I don’t register way in advance in case I have to cancel.

My advice is to do your best on any given day. Only you get to decide what your best is. Lower your expectations and let yourself be pleasantly surprised. Don’t beat yourself up on hard days because there will be hard days. This disease has made me so much stronger. I’m resilient. I can handle challenging things. The Crohn’s community is very supportive. Our conversations are really powerful. It makes us feel less alone.

Alison Feller is a podcaster, freelance writer and editor, runner, marathoner, and proud mom to Annie. Diagnosed with Crohn’s disease when she was 7 years old, she has written about running and Crohn’s for leading fitness and health magazines. Her weekly podcast, “Ali on the Run,” is the country’s No. 1-rated podcast on running.