My Life With Crohn's

By Sonya Goins, as told to Stephanie Watson

My friends call me “Sonya Strong.” When you’ve got two serious illnesses — Crohn’s disease and an aggressive form of breast cancer — you could ask, “Why me?” But I never have. I just keep looking forward, following my doctors’ advice and trying to stay positive.

Crohn’s disease has been my constant companion since 1985, when I was a student at the University of Maryland. Back then, I started to have stomach cramps and bloody diarrhea. At first, I thought the dorm food was making me sick, but it got to the point where I couldn’t keep any food in. I’m 5 feet, 3 inches tall, and at the time I weighed just 85 pounds.

To begin with, my doctor diagnosed me with ulcerative colitis, the other type of inflammatory bowel disease. I got so sick that eventually I had to be hospitalized and dropped out of school for a semester.

It wasn’t until 2 years later that my doctors realized I had Crohn’s disease. Back then, the tests weren’t very good at identifying inflammation in the digestive tract.

No Solid Food

I had a hard time getting control over my Crohn’s disease. I went on the drug sulfasalazine (Azulfidine), but it didn’t really work for me. Even on the medication, I developed fistulas — abnormal tunnels between my intestines and nearby organs. I had surgery at least once a month to fix each fistula that formed.

Throughout that time, I couldn’t eat. Everything I did eat ran right through me. I couldn’t hold onto any nutrients. I spent months at a time in the hospital, trying to get my fistulas to heal and put on weight.

After I graduated from college, I went on total parenteral nutrition (TPN). I got all of my nutrients through a tube placed directly into my vein. That meant no eating. It was tough because I lived with my parents and everyone around me was eating. I’d go out for a run to take my mind off food.

A Half-Marathon With an IV

At first, I could barely run down the block, but eventually I was able to run farther and farther. At that point in my life, I had gotten tired of being sick and tired. I remember getting a postcard in the mail about a fundraising run to raise money for the Crohn’s & Colitis Foundation, and I decided to do it.

In 2010, I started running half-marathons for the foundation, and I never looked back. I ran two half-marathons and two 10-mile races connected to an IV in my backpack.

During my last race, the Las Vegas Half Marathon, I was really sick. The medicines I was taking weren’t working. I had to walk the whole thing, which made the race take twice as long. It was the hardest thing I’ve ever had to do. I couldn’t eat anything but hard candies for energy. Toward the end of the race, I got dizzy and I didn’t know if I could finish. But finally, after 3½ hours, I made it across the finish line.

I wanted to show other people that just because you have terrible things happen in your life, you don’t have to give up. Every time I cross the finish line, it’s like I’m giving the finger to Crohn’s disease.

Under Control

About a year ago, I had surgery to remove my colon. The surgeon gave me an ostomy — an opening for wastes to drain into a bag outside my body.

Having an ostomy isn’t a cure for Crohn’s disease, but it has helped me. Truth be told, I wish I’d had the surgery a long time ago. It’s improved my quality of life. I can eat pretty much anything I want now without getting sick.

The ostomy bag is pretty easy to manage, too. No one can see it unless I lift my shirt.

My ostomy bag is more than a tool to manage my Crohn’s disease. It’s also a kind of litmus test. The people in my life who know my story and are positive about the ostomy are the ones who stick around. Those who are negative about it aren’t worth keeping around.

More Bad News

On July 29, 2020, just when I’d finally gotten my Crohn’s disease under control, I was diagnosed with an aggressive form of breast cancer. I started chemotherapy in mid-August. I’m going to have a double mastectomy in January, followed by more chemo and targeted therapy.

If there could be an upside to my cancer, it’s that the chemo also keeps my Crohn’s disease at bay. I’d hate to be dealing with a Crohn’s flare and breast cancer at the same time.

It’s tough to live with two serious diseases, but prayer and my friends have helped me get through it. I have a ton of longtime friends. I also have a ton of new friends who I’ve met through social media. They write things like, “I’m praying for you. I’m encouraging you to keep going.”

Sonya Strong

People kept telling me I was strong — “Sonya Strong.” I’m strong because I have others around me who are strong. I have people who encourage me and pray for me.

Now I want to encourage others. When I was first diagnosed with Crohn’s in 1985, I felt so alone. I told myself I didn’t want anyone else to ever feel like that. Crohn’s can be an embarrassing disease, and back then, I didn’t really talk about it. One of the reasons for me to share my story now is to create awareness and tell people, “You’re not alone. You have a family. We’re in this together.”

I hope people with Crohn’s disease won’t give up. I want them to find hope in the belief that there will be a cure someday. That’s why I keep running these races.

Sonya Goins is a reporter for CCX News, a local TV station covering the Twin Cities region in Minnesota.