Inflammatory bowel diseases (IBDs) such as Crohn’s disease and ulcerative colitis (UC) are not easy conditions to talk about. But a much rarer topic is how minority patients are affected by these chronic and debilitating diseases.
Although IBD has mostly affected eggs in the past, a A study published in August 2016 in the journal inflammatory bowel disease There has been an increase in the rate of inflammatory bowel disease in minority groups in the United States over the past two decades.
“Patients may be reluctant to recognize that they have ulcerative colitis or Crohn’s disease, so our current numbers may be an underrepresentation of these minority groups,” says Brent Polk, MD, professor of pediatrics and gastroenterologist at Children’s Hospital Los Angeles. Dr. Polk says that at least 40 percent of his patients are from underrepresented minorities.
According to Polk, who also serves as president Crohn’s and Colitis Foundation National Scientific Advisory Committee, lack of diversity and participation in clinical trials related to IBD could be responsible for missing data on minority patients. To try to bridge this gap, the CDC recently provided a grant to the Crohn’s and Colitis Foundation, with Polk’s guidance, to explore inflammatory bowel disease in racial and ethnic minority groups.
Despite an increase in IBD in the underrepresented population, there are still many misconceptions about ulcerative colitis and Crohn’s in minority patients. Here we debunk six common myths.
Myth #1: Minorities are not in danger
Crohn’s disease and ulcerative colitis can affect anyone. Historically, Crohn’s was thought to affect only European populations, but research now shows that minorities are at risk as well.
A study was published in March 2016 in Gastrointestinal Diseasesconducted by the Johns Hopkins University School of Medicine, found that African Americans have a slightly lower risk of IBD than white Americans, although African Americans are still at high risk of developing gastrointestinal disease.
“As an African American, I was diagnosed in 1998 — I didn’t know anyone who looked like me had Crohn’s disease,” says Jaylene Henderson, Crohn’s advocate and founder of Gutless and Glamorous.
Henderson remembers being told, “Blacks don’t get Crohn’s disease,” even though she had a serious condition and none of the medical options had worked.
Polk says that with the increase in IBD in minorities, rates of infection appear to be increasing worldwide.
according to A study published in the journal Inflammatory bowel diseasesUlcerative colitis is more common among Hispanics than among non-Hispanic whites, and hospitalizations associated with Crohn’s disease are increasing in Asians.
In India and China, infection rates [of IBD] In very large urban centers, and oftentimes, where they adopt American diets and fast food preparations,” Polk explains, highlighting the environmental impact on IBD rates.
Myth 2: There is no racial disparity in treatment
There is a prevalent ethnic disparity in the treatment of IBD. a Review of more than 40 studies in the journal Inflammatory bowel diseases It found that African Americans with IBD receive different surgical and medical care than whites with IBD.
According to research, minorities with UC are 25 to 50 percent less likely to undergo colectomy than whites, while minorities with Crohn’s disease are 30 to 70 percent less likely to undergo bowel resections than whites. The study authors suggest that the difference in surgery rates correlates with access to health care. It also found that African Americans disproportionately suffer from IBD compared to whites because they lack affordable health care, specialized physicians, and appropriate accommodations at work.
in addition to , April 2017 study in Journal of Crohn’s and Colitis found that African American patients experienced postoperative complications, including higher rates of sepsis and infection, after surgery, compared to non-African American patients.
Myth 3: You should keep your diagnosis a secret to prevent shame
In some cultures, sharing an IBD diagnosis with family or friends can be considered taboo.
As a South Asian woman with Crohn’s disease, Tina Aswany Amprakash He struggled head-on with the cultural and societal stigma surrounding being diagnosed with a chronic disease.
“Run it in my family [and] It’s very aggressive in my family, and because my family has this, I helped a little bit to normalize it because they knew what it was. “Nobody else I know in the South Asian community has really had this disease or understood anything about it,” Ombrakash says. “In a lot of cultures and in my culture specifically, it’s kind of best left to the imagination. If you have a condition it’s better not to talk about it.”
When Omprakash was diagnosed with Crohn’s disease at the age of 22, she had to leave her Wall Street career feeling like her life was in a constant free fall. After 22 surgeries, four near-death experiences and many complications, Amprakash decided she no longer wanted to be ashamed of her condition.
After my third ostomy bag surgery I felt a turning point. “I got out of surgery and feeding tubes, with an ostomy, with my ducts out of my back and I thought, you know, that’s it,” Omprakash says. “It wasn’t that my life was in free fall, it was my life coming back and I would 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 cron.
Myth 4: Stress causes IBD
IBD is a biological disease and there is no evidence that stress or depression causes it. However, stress and depression, which disproportionately affect minorities according to a study published in May 2018 in Preventive Medicinecan affect the symptoms and treatment of diseases.
“At least a third of patients with IBD will experience a major depressive episode at some point in their lives,” Polk says. “Some patients can basically tell when their symptoms will get worse based on their anxiety, sleep disturbances, or other behaviors.”
Henderson, who has lived with Crohn’s disease since 1998, is trying to cope with the mental impact of IBD day in and day out.
“Once I knew I had to get a colostomy bag, I thought I had a really dark time,” Henderson says. “I couldn’t believe I would have to get one.”
Henderson has learned that living with a chronic illness is a daily business. “It can be frustrating, it can be lonely, it can be frustrating, but I really try to take it one day at a time.”
To deal with stress, Henderson practices yoga, deep breathing, prayer, and meditation.
Myth 5: Alternative medicines are better than doctors’ orders
Although it may seem right to start treatment with alternative therapies that are part of your cultural norm, it is important to remember that your doctor will provide you with the treatment he deems necessary according to your diagnosis.
“There is a clash between Eastern medicine and Western medicine,” explains Amprakash, who has used Eastern medicine since she was young, but has since adopted Western medicine to manage her condition.
Omprakash recommends that people with IBD have open conversations with their doctor about their cultural norms and ask about alternative treatments that can be safely tried. This ensures that treatment is not delayed.
“I still use alternative therapies, but primarily as a supplement to my Western medicine and only with the approval of my gastroenterologist,” Omprakash says. “I find that holistic therapies — acupuncture, homeopathy, Ayurveda — can alleviate the peripheral issues, or ailments I have that are secondary to Crohn’s. [such as] Joint pain, mild sinus problems and migraines, but for me, they just 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 think they are alone. Whether it’s a fear of cultural stigma, the negative stigma of a chronic illness, or a struggle with mental health — living with IBD can feel like the odds are stacked against you.
“I struggled really hard with body image, how I saw myself, and how I thought others would see me,” Henderson says.
When Henderson finally had an ostomy surgery, she couldn’t believe how much better she felt. “I really don’t want other people to suffer like I did because of the stigma,” she says.
In fact, Henderson does everything she can to help others, especially minorities, know that they are not alone. Last summer, American Eagle appeared with Henderson in the Aerie Real campaign with an ostomy bag.
“I haven’t lost the importance of that campaign. I was once someone who needed to see that. If you saw my picture when I was 14, when I was diagnosed, I think the whole course of my journey with Crohn’s would have been different. I wouldn’t have suffered as long as I had struggled, I wouldn’t have been suffering.” From debilitating pain as long as I suffer [if I had] I saw this photo,” Henderson says.
Laura Wingate, senior vice president of education at the Crohn’s and Colitis Foundation, has found that countless patients with IBD feel isolated and lonely. Wingate recommends that anyone who has been newly diagnosed or has difficulty reaching someone — whether it’s your doctor, a fellow community member, family member, or friend — should get in touch.
“Tips and tricks from other patients can make managing stress, anxiety, and body image issues so much easier. It’s so exciting to be able to get this information from a peer.”
