IBD Isn’t Just a ‘White’ Disease: How a Black Woman Dealt With Her Diagnosis
Key takeaways:
Chealynn Feaster was diagnosed with Crohn’s disease — an inflammatory bowel disease (IBD). It can cause inflammation throughout the digestive tract.
Even after her diagnosis, she wondered if she actually had Crohn’s, because the information she was given said IBD usually affected white people.
She recommends that people with IBD learn about the condition and trust their own instincts.
For many people, college is a time for beginnings and learning new things. Chealynn Feaster, a quality analyst who lives in New York City, found her college years to be difficult. That’s when she began having fatigue and stomach pain.
Her sophomore year, a doctor diagnosed her with Crohn’s disease. Crohn's is a form of inflammatory bowel disease (IBD). It is an immune-mediated condition that causes inflammation in the digestive system. IBD can also lead to problems outside the gut, like rashes and joint pain.
Diagnosing IBD can be challenging. For Chealynn, who is now 42, finding out the cause of her symptoms took some time, and visits to more than one doctor.
“I was tired all the time,” she remembers of that first semester at college on Long Island, New York. “I was choosing to sleep rather than go eat sometimes.”
On top of being so tired, Chealynn also had what she describes as strong stomach pains. She went to the school infirmary for help. They told her that her symptoms were caused by the stress of being a new college student.
“And I accepted that, because what did I know?” she says. “In my mind, it was just all these different transitions.”
IBD forces a pause
As Chealynn’s digestive symptoms got worse, she began vomiting. She saw another doctor, who said she had an ulcer. The doctor prescribed a proton pump inhibitor to try to decrease the amount of acid in her stomach, but it did little to help with her symptoms.
The pain, vomiting, and fatigue continued through her first year of college and into her second year. By that time, Chealynn had lost 30 pounds. She focused on watching her diet and told herself that she could cope with the symptoms. But she reached her limit at the start of the second semester of her sophomore year.
“That second semester, I just couldn’t do it. The fatigue was too much,” she remembers. “I went back home and was able to go to the doctor … and that’s when I got the diagnosis.”
After being diagnosed with Crohn’s, Chealynn tried to make sense of it all. The doctor’s office gave her a pamphlet that explained IBD. The pamphlet said IBD usually affected white people. People of Jewish ancestry were also mentioned as being at higher risk.
Chealynn tried finding more information online, but none of it added up for her. What were the chances that she had this disease if it was so uncommon in the Black community?
Looking for representation
Researchers acknowledge that IBD is not as well understood or studied in people from historically marginalized groups. This is despite the fact that the disease can, and does, affect people of all ethnicities.
When Chealynn was first diagnosed, she noticed that she didn’t see Black people in the IBD community. Her diagnosis was already confusing. She says not seeing anyone who looked like her was isolating. Seeing a Black patient in an IBD pamphlet, for instance, would have made a difference to her.
“I want stories that kind of mirror mine, that I could connect to, relate to, cry at, laugh at — because I connect to it,” she says.
In recent years, she says, more Black people with IBD have been sharing their stories online. Media outlets, pharmaceutical companies, and patient advocacy groups are also trying to make sure more IBD patients of color are represented.
For Chealynn, seeing a TV commercial for an IBD medication featuring young women of color was important. “That could absolutely be me, and that’s really nice to see that,” she says.
Becoming comfortable enough to share her story
After her diagnosis, Chealynn tried different procedures to deal with Crohn’s. After about 6 years, she had her first surgery. A diseased part of her intestine was removed.
Today, she’s not sure why it took years for her to get a referral to a surgeon. Surgery is a common treatment for Crohn’s. “When I did see the surgeon, he did say, ‘There’s no reason you should have suffered this long,’" she says.
She felt better after the surgery, and a few years later she changed her medical team. Since then, she has needed several more operations to manage her Crohn’s. In 2015, she had surgery again to create a stoma. (This surgery, called an ostomy, involved bringing a small part of her intestine through her abdomen—allowing stool to bypass damaged areas of the bowel and exit the body.) She wears an ileostomy bag over the stoma to collect her stool.
She notes that it’s uncommon to find people of color sharing their stories of life with an ostomy. Things are improving, though, as more patients become comfortable sharing their journey online.
“There’s small little pockets of us out there, but it’s still not the easiest to find,” she says. “And sometimes I wonder: Am I supposed to be that person for someone else?”
The importance of education and hope
Through her experience with IBD, Chealynn says, she has become empowered. Learning about IBD and making her own treatment choices had a significant effect on her.
“I will say a lot of confidence came from making those decisions,” she says. “And the more that you make decisions and the more knowledge you gain, the more confident you will become.”
Chealynn notes that every journey with IBD is different. She stresses that people with IBD should advocate for themselves. Her advice to others is to get enough rest, take good notes at appointments, and join a support group.
Plus, she says, sometimes people with IBD should “be a little selfish” and learn to rest when needed. That might mean canceling plans when you’re not feeling well. “People who care about you, they’ll still be there,” she says.
“It’s gonna get better,” she says. “It’s gonna take trial and error. You are doing the right things. You will get to the place that you dream about.”
Why trust our experts?
