Today I wanted to celebrate Crohn’s patient, IBD advocate, news reporter and Crohn’s and Colitis Foundation board member, Sonya Goins! Sonya has been living with Inflammatory Bowel Disease since 1985. Here’s what Sonya has to say about her journey with Crohn’s Disease and living on Total parenteral nutrition (TPN).
My name is Sonya Goins. I’m a television News Reporter in the Minneapolis area. My three young adult children are my pride and joy. I’ve had Crohn’s disease since 1985. I was in college when I got sick and thought it was the dorm food. I spent more time at the doctor’s office than I did in class. My symptoms were debilitating with lots of painful stomach cramps and bloody, watery stools. A doctor first diagnosed me with Ulcerative Colitis. Then after a series of unsuccessful treatments and a lot of tests, I was diagnosed with Crohn’s.
There was a period when I didn’t know if I would make it.
I dropped out of school for two semesters and moved back home so my parents could help take care of me. I had several rectal/vaginal fistulas which were very painful and hard to get rid of. The hospital became my second home, and the operating room became a very familiar destination. I’m 5‘2” and at the time, I barely weighed 85 pounds. At one point, things got so bad that I was put on Total Parenteral Nutrition, which means all of my food went into by body by an IV through a port in my chest. I couldn’t eat any solid foods for 6 months, only soup. This treatment gave my digestive tract a rest, and the ulcers and fistulas healed.
Fast forward 10 years, I got married, had children and Crohn’s reappeared. Prednisone, Imuran, Pentasa, Asacol, you name it, I was on it. Nothing seemed to control my symptoms. In 2004, surgeons removed half my colon, and I was put on Remicade. It worked for a few years, but then I developed antibodies and had to be taken off the drug. Cimzia and then Humira were the next biological drugs targeted to treat my Crohn’s.
My disease is severe and I’m running out of options when it comes to medication.
Besides my colon, I also have Crohn’s in my upper GI tract. During a flare, if I drink something hot, I can feel it moving through my esophagus. It’s very painful.
Crohn’s has also affected my eyes. This summer I was diagnosed with Iritis. Every time I would look at bright light, my eyes hurt. I was put on steroid eye drops. It’s serious, you could lose vision if not treated. I’m still dealing with this issue. Six months ago, I was put on Stelara. However, In January, I had a really bad flare, and I’m now back on Total Parenteral Nutrition, or TPN (IV nutrition).
However, this time around, I can’t eat any food, just hard candies, broth, water, and sometimes coffee. I’ll endure this treatment for a year. Not eating food is starting to wear on me and I’m seeing a therapist to help me cope. I also pray a lot, and through the grace of God I’ll get through this. Despite my circumstances, I’m hopeful. In fact, that’s what I named my catheter that carries nutrition to my body—“hopeful.”
I’m not letting my situation dictate how I live my life. On March 4th, I walked a half marathon. Crossing the New Orleans Half Marathon finish line with my buddy “Hopeful,” is one of my proudest moments.
There were many reasons to sit this race out: fatigue, pain, recent foot surgery, to name a few. However, I had a million reasons to lace up my shoes. I’m stubborn and I refuse to let Crohn’s win. I walked 13.1 miles for my buddy Mike Stark, who is struggling with Crohn’s. I walked 13.1 miles for Minnesota pediatric patients. I walked 13.1 miles for my children. I walked 13.1 miles for myself.
Crohn’s disease has taken away so many things from me in the past 30 years— eating, peace of mind, and relationships. I wasn’t going to let it remove one more thing. The goal of my race was to show that just because you have a chronic condition, you don’t have to let it define you. Live your life! Every time I look at my race pictures, I remind myself that “I did it! My sickness has made me stronger. You can’t be shy when you’re walking around with a backpack full of IV fluids. I’m more confident at work and in my personal life. I like to tell folks who are newly diagnosed with IBD to hang in there.
You can do amazing things with your life despite the horrible diseases.
I’m also a Crohn’s Colitis Foundation Board Member-MN Dakota Chapter. Become an advocate for yourself, become an advocate for others. Research and spread awareness, this is how we’ll find cures. But most of all, remain positive, your outlook determines your outcome.