By Sonya Goins, told to Stephanie Watson
My friends call me “Sonya Strong”. When you have two serious illnesses – Crohn’s disease and an aggressive form of breast cancer – you might ask, “Why me? But I never did. I just keep looking forward, following my doctors’ advice, and staying positive.
Crohn’s disease has been my constant companion since 1985, when I was a student at the University of Maryland. At the time, I started having stomach cramps and bloody diarrhea. At first I thought the food in the dorm was making me sick, but it got to the point where I couldn’t keep any food. I am five feet tall, and at the time I weighed only 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. At the time, the tests weren’t very good at identifying inflammation in the digestive tract.
No solid food
I had trouble controlling my Crohn’s disease. I took 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 every fistula that formed.
During all this time, I could not eat. Everything I ate passed through me. I couldn’t store any nutrients. I spent months at a time in the hospital, trying to heal my fistulas and gain 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. It meant not to eat. It was difficult because I lived with my parents and everyone around me ate. I would go out for a run to get rid of the food.
A half marathon with an IV
At first I could barely get off the block, but eventually I was able to run further and further. At that point in my life, I was tired of being sick and tired. I remember receiving a postcard in the mail about a fundraising campaign to raise funds for the Crohn’s and Colitis Foundation, and I decided to do it.
In 2010 I started running foundation half marathons and have never looked back. I ran two half marathons and two 10 mile runs hooked up to an IV in my backpack.
In my last race, the Las Vegas Half Marathon, I was really sick. The medications I was taking were not working. I had to walk everything, which made the race twice as long. It was the hardest thing I have ever had to do. I couldn’t eat anything other than hard candy for energy. Towards the end of the race, I got dizzy and didn’t know if I could finish. But finally, after 3:30, I crossed the finish line.
I wanted to show others that just because terrible things are happening in your life doesn’t mean you don’t have to give up. Every time I cross the finish line it’s like putting my finger on Crohn’s disease.
About a year ago, I had surgery to remove my colon. The surgeon gave me an ostomy – an opening for waste to flow into a bag outside of my body.
Having an ostomy is not a cure for Crohn’s disease, but it did help. To be honest, I would have liked to have had the operation a long time ago. It improved my quality of life. I can eat pretty much whatever I want now without getting sick.
The ostomy bag is also quite easy to manage. No one can see it unless I lift my shirt.
My ostomy bag is more than a tool for managing my Crohn’s disease. It is also a kind of litmus test. The people in my life who know my story and are positive about an ostomy are the ones who stay. Those who are negative about this are not worth staying.
No more bad news
On July 29, 2020, just when I had finally got my Crohn’s disease under control, I was diagnosed with an aggressive form of breast cancer. I started chemotherapy in mid-August. I will be having a double mastectomy in January followed by more chemotherapy and targeted therapy.
If there can be any benefit to my cancer, it is that chemotherapy also keeps my Crohn’s disease at bay. I wouldn’t like to have to deal with a Crohn’s flare and breast cancer at the same time.
It is difficult to live with two serious illnesses, but prayer and my friends have helped me out. I have a ton of longtime friends. I also have a ton of new friends that I have met through social media. They write things like, “I pray for you. I encourage you to continue.”
People kept telling me I was strong – “Sonya Strong”. I am 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 diagnosed with Crohn’s disease in 1985, I felt so lonely. I told myself that I didn’t want anyone else to feel like this. Crohn’s disease can be an embarrassing illness, and at the time I wasn’t really talking about it. One of the reasons I am sharing my story now is to create awareness and say to people, “You are not alone. You have a family. We are in the same boat.”
I hope people with Crohn’s disease won’t give up. I want them to find hope in the belief that there will one day be a cure. That’s why I keep running these races.
Sonya Goins is a reporter for CCX News, a local television station covering the Twin Cities area of Minnesota.