Benjamin King, star of Disney Channel's hit TV series Liv and Maddie, helps others—especially kids—learn to live well with Crohn's disease. He spoke with NIH MedlinePlus magazine about his own long journey with this condition.
Why have you chosen to speak out about Crohn's disease?
For many years I really didn't talk about it. But I always figured at some point I could turn what was a very dire situation in my life into something for the greater good. As our show Liv and Maddie began to take root in so many homes that watch the Disney Channel and have children—especially considering the number of pediatric cases of Crohn's—I knew the time was right for me to speak out. Our show has become a platform for me to open up to children and adults with this disease and say "you can fulfill your wishes"…"you can live your life." It has been a real honor for me to work with the Crohn's and Colitis Foundation of America to raise awareness.
Can you share with us your journey with this condition?
It started when I was 15 and was diagnosed with proctitis. It was mortifying. But I was given mild medications in combination with other therapies that seemed to work. And I was able to manage to live my life and go to college.
When I was 24, I got really sick with severe pain and bleeding. I ended up in the hospital with ulcerative colitis. They were going to remove my colon but as a last ditch effort they put me on cyclosporine and it worked. I was sent home with a new life. And for 13 years I took medications and had some mild symptoms, but lived a productive life with only rare problems.
Then in late 2008 and into 2009, I got sick again and had to go back to the hospital. This time they had to remove my colon. I went through nine months of hell with three surgeries. I am a big guy—6 feet 4 inches, 220 pounds—but I was down to 157 pounds. I didn't know about my future and was frightened and depressed.
When did you finally get a diagnosis of Crohn's disease?
While I was effectively "cured" of ulcerative colitis because my colon had been removed, I still wasn't right. Finally, in 2010, I saw a great doctor and underwent extensive testing and he diagnosed me with Crohn's. This leveled me. I was shaking. I thought I had been cured. But at the same time I thought now maybe they can really figure this out and get me well.
And four and a half years after my surgeries and trying two medications, suddenly the clouds lifted, the sun began to shine, and I started to feel like myself again. I just felt re-energized. I was able to direct an episode of our television show, which was great.
You've called Crohn's a "hidden disease." Why?
It's not like a broken arm where people can see the cast. People don't know the struggles we have unless we come out and say something about it. And this is a disease that carries with it great personal embarrassment and shame. Why would you want to talk about a condition that revolves around the time you spend in the bathroom? I hear of so many people, friends, family who are being diagnosed, that I have to wonder how many suffer in silence. How many more are there who really need help but aren't getting it?
How have you benefited from the support of others with Crohn's?
When I got really sick in 2009, I found great comfort in a support group through the IBD Support Foundation (ibdsf.org). As I became healthier, I wanted to get involved in facilitating pediatric support groups. Helping kids by sharing my story in a way they could identify with has become a powerful ingredient in my own recovery. Their spirit, their willingness to laugh and cry about these crazy experiences we all go through, is humbling, and very inspiring for me personally.
What message do you have for kids and their families dealing with these issues?
First, it is OK to feel that this stinks and is not fair. It's part of the healing process to say you have been dealt a bummer hand. Second, you are not alone. If you can, try to talk with someone who has dealt with these conditions. That has really helped me. Third, there is hope. Life gets better and there are many options that can help you. I am not a physician, but I do believe for children, there will be a cure in their lifetime.
- Crohn's disease is a chronic, or long-lasting, disease that causes inflammation—irritation or swelling—in the gastrointestinal (GI) tract.
- The exact cause of Crohn's disease is unknown. Researchers believe that factors such as an autoimmune reaction, genes, microbes in the GI tract, and environment may play a role in causing Crohn's disease.
- Crohn's disease can occur in people of any age. However, it is more likely to develop in people between the ages of 20 and 29.
- The most common signs and symptoms of Crohn's disease are diarrhea, abdominal cramping and pain, and weight loss.
- Good nutrition is important in the management of Crohn's disease. A health care provider may recommend that a person make dietary changes.