Although IBD has predominantly affected whites in the past, a study published in August 2016 in the journal Inflammatory Bowel Disease found an increase in the rate of IBD in minority groups in the United States over the past two decades. “Patients may be reluctant to identify as having ulcerative colitis or Crohn’s disease, so our current numbers may really underrepresent these minority groups,” says Brent Polk, MD, a professor of pediatrics and a gastroenterologist at the Children’s Hospital in Los Angeles. Dr. Polk says at least 40 percent of his patients are from underrepresented minorities. According to Polk, who is also the chair of the Crohn’s and Colitis Foundation’s National Scientific Advisory Committee, a lack of diversity and engagement in IBD-related clinical trials could be responsible for the missing data on minority patients. To try to bridge this gap, the CDC recently provided a grant to the Crohn’s & Colitis Foundation, under the guidance of Polk, to explore IBD in racial and ethnic minority groups. Despite the increase of IBD in underrepresented populations, many misconceptions still exist surrounding Crohn’s and ulcerative colitis in minority patients. Here we debunk six common myths.
Myth 1: Minorities Aren’t at Risk
Crohn’s disease and ulcerative colitis can affect anyone. Historically, Crohn’s was believed to only affect European populations, but research shows now that minorities are also at risk. A study published March 2016 in Gastroenterology, conducted by Johns Hopkins University School of Medicine, found that African-Americans are at a slightly lower risk than white Americans for IBD, although African-Americans are still at a significant risk for gastrointestinal disease. “As an African-American, diagnosed in 1998 — I didn’t know anyone that looked like me with Crohn’s disease,” says Gaylyn Henderson, a Crohn’s advocate and the founder of Gutless and Glamorous. Henderson remembers being told, ‘Black people don’t get Crohn’s,’ even though she had a severe case of it and none of the medicinal options were working. As IBD increases in minority populations, incidence rates also seem to be increasing around the world, Polk says. According to a study published in the journal Inflammatory Bowel Diseases, ulcerative colitis is more common among Hispanics compared with non-Hispanic whites, and Crohn’s disease–related hospitalizations are increasing in Asians. “In India and China the incidence rates [of IBD] are going up in very large urban centers and, frequently, where they’re adopting U.S. diets and fast food settings,” explains Polk, highlighting the environmental influence on IBD incidence rates.
Myth 2: There Is No Racial Disparity in Treatment
There is a prevalent racial disparity in treatment for IBD. A review of more than 40 studies in the journal Inflammatory Bowel Diseases found that African-Americans with IBD receive different surgical and medical care than whites with IBD. According to the research, minorities with UC are 25 to 50 percent less likely to undergo colectomy than whites, while minorities with Crohn’s are 30 to 70 percent less likely to undergo bowel resection than whites. Authors of the study suggest the difference in surgical rates correlates with access to healthcare. African-Americans were also found to suffer disproportionately from IBD compared with whites because they lacked access to affordable healthcare, specialized doctors, and suitable accommodations at work. Additionally, an April 2017 study in the Journal of Crohn’s and Colitis found that African-American patients experience more postoperative complications, including higher rates of sepsis and infection, following surgery, in comparison with non-African-American patients.
Myth 3: You Have to Keep Your Diagnosis a Secret to Prevent Shame
In certain cultures, it can be seen as taboo to share an IBD diagnosis with family or friends. As a South Asian woman with Crohn’s, Tina Aswani Omprakash has struggled firsthand with the cultural and societal stigma that surrounds being diagnosed with a chronic disease. “It runs in my family [and] it’s pretty aggressive in my family, and because my family has this, it helped a little to normalize it because they knew what it was. No one else I knew in the South Asian community really had this disease or understood anything about it,” says Omprakash. “In a lot of cultures and in my culture specifically, it’s best left sort of to the imagination. If you have a condition it’s better not to talk about it.” When Omprakash was diagnosed with Crohn’s at age 22, she had to leave her career on Wall Street and felt like her life was in a constant free fall. After 22 surgeries, four near-death experiences, and many complications, Omprakash decided that she no longer wanted to be ashamed of her condition. After her third ostomy bag surgery she felt a turning point. “I came out of surgery with feeding tubes, with an ostomy, with drains coming out of my back and I thought, you know what, that’s it,” Omprakash says. “It wasn’t that my life was in free fall, it was that my life was coming back and I was going to make it come back. I took ownership.” She now openly shares her journey as a patient advocate for the Crohn’s and Colitis Foundation and through her blog, Own Your Crohn’s.
Myth 4: Stress Causes Inflammatory Bowel Disease
IBD is a biological disease and there is no evidence that stress or depression causes it. However, stress and depression, which disproportionately affects minority populations according to a study published in May 2018 in Preventative Medicine, can impact symptoms and management of the diseases. “At least one-third of patients with inflammatory bowel disease will have a bout of major depression at some point in their life,” says Polk. “Some patients can essentially tell when their symptoms are going to get worse based on their anxiety, disturbances in sleep, or other behaviors.” Henderson, who has been living with Crohn’s since 1998, tries to cope with the mental impact of her IBD day by day. “Once I learned I would have to have a colostomy bag, I think I went through a really dark time,” says Henderson. “I just couldn’t believe I would have to have one.” Henderson has learned that living with a chronic illness is an everyday job. “It can be depressing, it can be isolating, it can be discouraging, but I just really try to take it one day at a time.” For dealing with stress, Henderson practices yoga, deep breathing, prayer, and meditation.
Myth 5: Alternative Medicines Are Better Than Doctors’ Orders
Although it might seem right to start your treatment with alternative therapies that are part of your cultural norm, it’s important to remember that your doctor will provide you with the treatment he or she deems necessary according to your diagnosis. “There’s a clash between Eastern and Western medicine,” explains Omprakash, who from a young age used Eastern medicine, but has since embraced Western medicine to manage her condition. Omprakash recommends that people with IBD have open conversations with their doctor about their cultural norms and ask which alternative therapies are safe to try. This ensures that treatment isn’t delayed. “I do still use alternative treatments, but mainly as a complement to my Western medicine and only with the approval of my GI doctor,” says Omprakash. “I find that the holistic therapies — acupuncture, homeopathy, Ayurveda — can ease peripheral issues, or ailments I have that are secondary to the Crohn’s [such as] joint pain, mild sinus issues and migraines, but for me, they aren’t able to control my brand of Crohn’s disease."
Myth 6: You Are Alone
Most of the myths and fears surrounding Crohn’s disease exist because patients believe they are alone. Whether it’s a fear of cultural shame, the negative stigma of a chronic illness, or a struggle with mental health — living with an IBD can feel like the odds are stacked against you. “I struggled immensely with body image and how I saw myself and how I thought others would view me,” says Henderson. When Henderson finally had ostomy surgery, she couldn’t believe how much better she felt. “I really don’t want others to suffer the way I suffered because of the stigma,” she says. In fact, Henderson is doing everything she can to help other people, especially minorities, know that they are not alone. This past summer, American Eagle featured Henderson in an Aerie Real campaign with her ostomy bag. “It’s not lost on me, the significance of that campaign. I was once somebody that needed to see that. If I had seen my image when I was 14, when I was diagnosed, I think the whole trajectory of my journey with Crohn’s would have been different. I wouldn’t have suffered as long as I did, I wouldn’t have had debilitating pain as long as I did [if I had] seen this image,” says Henderson. Laura Wingate, the senior vice president of education for the Crohn’s and Colitis Foundation, finds that countless patients with IBD feel isolated and alone. Wingate recommends that anyone newly diagnosed or struggling reach out to someone — whether it’s your doctor, a peer in the community or a family member or friend. “Tips and tricks from other patients can make managing the stress and anxiety and body image issues so much easier. It’s so empowering to be able to get that information from a peer.”
