Award-winning actor, director, and producer Tyler James Williams opens up about living with Crohn’s disease.
In 2012, Tyler James Williams was suffering in silence.
To the world, he was a successful young actor. In private, he was trapped in an agonizing cycle of intense abdominal pain and discomfort after every meal. Over the next five years, this was his new normal.
“Your life can be so wrapped up in symptom management,” he said. “That was the first thing on my brain when I woke up in the morning: What do I have to do today? And how am I going to get through it?”
Williams was eventually diagnosed with Crohn’s disease — a type of inflammatory bowel disease (IBD). The U.S. Centers for Disease Control and Prevention estimates that between 2.4 and 3.1 million people in the United States live with IBD, a group of diseases that affect the digestive tract.
From pain to perspective
But diagnosis is only one step in the journey. With IBD, a lack of abdominal pain or other symptoms doesn’t mean a lack of inflammation, which can continue even when you feel fine. That’s why symptom relief should not be the only goal.
“IBD refers to several chronic conditions including Crohn’s disease and ulcerative colitis in which the immune system causes the gastrointestinal tract to become inflamed,” explained Casey Chapman, M.D., a gastroenterologist and chief medical officer at GI Alliance in Baton Rouge, La. “This leads to symptoms like diarrhea, bleeding, and intense abdominal pain. Left undertreated, IBD can lead to fibrosis, or scarring, of the intestines, leaving them unable to function properly so it’s critical that patients are getting appropriate treatment as soon as possible.”
Williams learned this the hard way, spending five years in and out of hospitals attempting to manage his symptoms on his own. He ended up in emergency surgery, losing six inches of his intestines to severe scarring.
“What I’ve learned is that a symptom is just flagging a bigger problem,” he said. “I looked at it as, ‘my stomach hurts right now, I need that to stop so I can do my job,’ but the real answer was that something was wrong, and I needed to talk to somebody who specializes in this. I understand that stopping the feeling of the symptom doesn’t address the root of the issue.”
Elevating the standard of IBD care
While symptom management is important for feeling better, IBD is a lifelong journey.
“Management options for IBD have evolved beyond symptom relief, and patients should work closely with their gastroenterologist to define long-term goals,” Dr. Chapman said. “In addition to managing symptoms, this can include reducing underlying inflammation and visible improvement of the intestinal lining, also called endoscopic improvement. That deeper level of improvement can help lower the risk of flares and complications over time.”
Now, Williams is using his platform to help dismantle the “tough-it-out” mentality by partnering with AbbVie’s Beyond a Gut Feeling initiative, which aims to raise awareness and educate those living with IBD about the importance of working with their gastroenterologist on long-term goals.
“I believe part of the reason I went through my Crohn’s journey was to learn how to help others navigate theirs,” he said. His message is simple: “Don’t tough it out — talk to your doctor.”
For more information about IBD and Tyler James Williams’ story, visit beyondagutfeeling.com
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