Actor Tyler James Williams just won a Golden Globe for his performance as the school teacher Gregory Eddie on the hit show Abbott Elementary. What you may not know is that Williams, 30, also has Crohn’s disease, an autoimmune disease that can cause serious complications that sometimes require surgery to remove some or all of the large intestine.
Williams is not alone. The prevalence of Crohn’s disease has increased worldwide over the past 50 years, affecting over half a million people in the US; it is still considered relatively rare, and the most common symptoms are abdominal pain, diarrhea, fever, fatigue, bloating, blood in the stool, and sometimes mouth sores.
For some people with the condition, symptoms can start before the age of 15, although most people are usually diagnosed with Crohn’s disease between the ages of 20 and 30. (About 1 in 4 people with Crohn’s are diagnosed in their childhood or teen years.)
Williams was diagnosed at 24, when an X-ray revealed he had an inflamed bowel filled with scar tissue.
After playing the character for four years, Williams told Men’s Health he wanted to avoid high school roles and instead do more adult projects. As a result, Williams tried to undergo a body transformation, including bulking up, which almost killed him.
While pursuing a routine that involved hiring trainers and force-feeding himself, Williams stated, “it just crashed. Everything shut down.” After experiencing stomach pains that required medical attention, Williams was diagnosed with a flare-up of Crohn’s disease, which is a type of inflammatory bowel disease (IBD) he didn’t know he had.
Undergoing emergency surgery in 2017, Williams had 6 inches of his small intestine removed. Complications included sepsis, which is potentially life-threatening.
At this point, he weighed 105 pounds and was unable to walk, he told Men’s Health. Around 65% to 75% of people with Crohn’s disease are underweight, with malnutrition being classified as a severe complication. Additionally, flare-ups, or the reappearance or worsening of symptoms, can occur, lasting for days, weeks, and even months. (Williams had flare-ups weekly and almost daily starting at age 19, according to a video he made with the Crohn's & Colitis Foundation, but it took years to get a correct diagnosis.)
Although Crohn’s can’t be cured, treatment options are available, including medication, diet and nutrition, and surgery.
At the moment, Williams told Men's Health, “I had to learn how to stop making a dramatic change happen really quickly and learn how to have a better relationship with my body. The important thing for me, and those like me, to remember is that longevity is a big part of the game. If you can’t [stay strong] and be healthy, there really is no point.”
GI experts tell BuzzFeed News how the disease affects young people, including physical and mental adversities.
Crohn’s disease in children
Overall, an estimated 3.1 million adults in the US have been diagnosed with IBD, including Crohn’s disease and ulcerative colitis, which are similar conditions.
Crohn’s disease can affect any part of the GI tract, from the mouth to anus, but most commonly, the small intestine and the beginning of the colon. Ulcerative colitis usually only affects the large intestine. Both can result in serious medical issues.
In these autoimmune disorders, the immune system attacks healthy tissue in the digestive tract. They are chronic conditions, meaning they can flare up at various times during someone’s life, followed by periods of time with fewer symptoms.
Although the cause of Crohn’s disease is unknown, studies indicate that genetic and environmental factors play a role. Certain medications, smoking, toxins, infections, and some genes are associated with a higher risk of the condition. There are several theories as to why it’s on the rise, including the Western-style diet of processed foods, an overly hygienic childhood (basically a lack of exposure to germs and parasites once common in human populations), and possibly certain medications.
About 80,000 children have Crohn’s, which can lead to weight loss, malnutrition, fatigue, abdominal pain, and severe diarrhea. Children can also experience weakened bones, stunted growth, and delayed puberty.
Dr. Carlton Thomas, a board-certified gastroenterologist based in California, shares how symptoms can be different for adults and children with Crohn’s disease.
“Pediatric cases are often more severe and may present with less typical presentations such as delayed puberty and poor growth,” Thomas told BuzzFeed News. “The physical symptoms can also vary depending on the severity of inflammation. If your inflammation level is mild, you may not feel anything at all. Severe inflammation can lead to bowel obstructions, perforations, abscesses, malnutrition, anemia, and even death in rare cases.”
For severe cases like Williams’s, Crohn’s can be potentially life-threatening and lead to serious complications.
Diets and flare-ups
Between 5% to 15% of people with Crohn’s disease have relatives, such as parents, siblings, or children, who also have the disease. It can also increase the risk of other autoimmune and inflammatory diseases, like type 1 diabetes, celiac disease, rheumatoid arthritis, psoriasis, and asthma, and can impact other parts of the body like the eyes, skin, joints, bones, and reproductive system.
Tyrel Jackson Williams, the younger brother of Tyler James Williams, experienced his first flare-up in 2020, he told Men’s Health, pushing the brothers to focus on their health together and experiment with foods they could eat that won’t trigger flare-ups.
People who have Crohn’s disease often need to alter their diet, but the types of foods they need to avoid can vary from person to person.
“There is no clear dietary trigger so I advise my patients to avoid the foods that trigger them uniquely by trial and error,” Thomas said.
Some people may need to avoid lactose, spicy food, alcohol, and carbonated drinks. In one study, people with ulcerative colitis who ate meat and animal products, specifically red and processed meats, and drank alcohol were more likely to experience a relapse than those who did not.
For Williams, treatment meant giving up trigger foods like coffee, alcohol, and red meat, according to Men’s Health.
Mental health effects
Psychological conditions, including depression, anxiety, stress, and social isolation, are associated with IBD, along with a lower quality of life. Some concerns people often have are anxiety around losing bowel control, fear of stigma, feeling unclean, and going to the bathroom often. As a result of increased psychological stress, symptoms can worsen, affecting inflammatory activity.
“Body image issues may arise from delayed puberty and poor growth, as well as side effects from medications such as steroids that may alter physical appearance,” Thomas said. “Some kids even require ostomies due to surgical issues that arise, which can also affect body image and lead to depression. Physical health limitations can limit the ability to participate in certain activities.”
Dr. Ali Kazemi, a gastroenterologist based in Virginia, shares how children and teens are more likely to develop psychosocial issues regardless of the chronic condition.
“Due to the symptoms and complications of Crohn's disease, which may prevent them from taking part in sports and activities or may lead them to miss many days of school, children and teens are more likely to develop depression or anxiety as compared to the general population,” Kazemi said. “Hence, it is imperative to implement psychosocial screening as part of their management. Other issues such as growth delay, pubertal delay, surgery scars, and ostomies may also affect their confidence and self-esteem.”
Stool and blood tests are used to monitor the disease and detect the severity of the inflammation. An MRE (magnetic resonance enterography) scan uses medical imaging for images of the small intestine and bowel. X-rays are used when there is a block in the bowel, limiting the degree to which food, liquid, gas, and stool can pass through. Additional exams can include colonoscopies and CT scans.
The good news is that more medications have come on the market that can help suppress the immune system and improve quality of life for people with Crohn’s, Thomas said.
“The availability of medications to treat Crohn’s grows each year,” Thomas adds. “This ranges from simple oral medications such as mesalamine to more high-tech monoclonal antibody medications that can be given by mouth, injections, or infusions.”