As a South Asian woman diagnosed with Crohn’s 15 years ago, Tina Aswani-Omprakash has struggled firsthand with the cultural stigma that surrounds chronic disease. “No one I knew in the South Asian community was really talking about or understood this disease. There’s a lot of shame attached to talking about ‘bathroom illnesses,’ particularly for women.” For Omprakash, this diagnosis also meant learning how to navigate cultural aspects, like festivals, spicy food, clothing, and marital expectations, all while managing countless surgeries and complications. After her third ostomy bag surgery, Omprakash decided to take ownership of her story. For the past three years, she has openly shared her health journey through her blog, Own Your Crohn’s. The patient expert and health advocate works to normalize the rhetoric around chronic illnesses and disabilities, particularly for members of minority populations. Now, she is leading a new diversity initiative with Girls With Guts, to empower new voices to share their stories of living with IBD. Omprakash launched the initiative in January 2021 along with three other passionate advocates. Community Connection aims to create awareness and education around the additional challenges and disparities that women of diverse backgrounds face while living with IBD or ostomies, while fostering a sense of sisterhood and community. “We want to form a support network for women of various races, ethnicities, ages, and sexual orientations. While the nuances of every culture and story differs, there is unity when we come together.” Basmah Ali, an Egyptian Arab American Crohn’s advocate, jumped at the chance to be part of this initiative. “As an Arab, I understand IBD can be incredibly isolating, more so when there are societal expectations that women with different backgrounds may not be able to meet without compromising their health. Community Connection is important to me because not only are we bringing awareness to these issues, we can provide a safe space for women to come together and share their personal stories after being silent for so long." In just a few months, Community Connection has already connected thousands of women nationally and globally. After a kickoff conversation with over 1,100 views, the team hosted a Facebook Live in February to honor Black History Month. Four women of color — two patients, two providers, and all part of the IBD world — came together to discuss IBD and provide insight on the complicated history between the black community and the medical community. The conversation was led by committee member Chealynn Feaster, a Black American Crohn’s, ostomy, and short bowel syndrome advocate. Feaster said it was a great opportunity to discuss something that’s not often talked about in the Black community. “Crohn’s was not something I was familiar with before being diagnosed in my teens. It was a lot of learning. When we put forth these initiatives, I always think back to that teenager who had never heard of Crohn’s disease. I’m speaking to that patient who’s scared.” For Women’s History Month in March, the team also held a live discussion on cultural and societal expectations of women living with IBD. Topics ranged from careers, to having children, to beauty and femininity, and brought together a panel of women from three different countries. Community Connection member Theodora Pestaña, a Greek American Crohn’s, colitis, and ostomy advocate who married into a Mexican family, was overwhelmed by the positive reaction. “There was an outpouring of comments from women saying, ‘Me too! I totally relate.’ People can find something relatable in these stories, even if it’s not a mirror image of their experience.” She adds, “It’s so important to talk about the untalkable topics, to empower women to end the stigma and the disparities.”
How Is IBD Affecting Minority Populations?
Historically, Crohn’s and ulcerative colitis have been considered to only affect populations of European descent. However, research shows that minorities are at risk and experience disparities in IBD treatments. A study published in August 2016 in the journal Inflammatory Bowel Diseases found that IBD rates have increased nationally in minority populations over the past two decades. The study also showed that ulcerative colitis is more common among Hispanics compared with non-Hispanic whites in the United States. It reports that Crohn’s disease–related hospitalizations among Asian patients are increasing as well. Global rates of IBD are on the rise, too. “Countries that historically had low incidence and prevalence of IBD are now increasing,” says Miguel Regueiro, MD, chair of the department of gastroenterology, hepatology, and nutrition at the Cleveland Clinic in Ohio. Dr. Regueiro says this is likely related to environmental factors like the adoption of a westernized diet in countries in Latin America, the Middle East, Africa, and Asia. He also says some data suggests possible phenotypic differences in nonwhite populations associated with more severe Crohn’s disease in the colon or more aggressive early perianal disease. Racial disparities also exist in IBD treatment. A study published in April 2017 in the Journal of Crohn’s and Colitis found that African American patients had a significantly higher rate of complications after Crohn’s disease–related surgery than non–African American patients. Reasons for treatment disparities are likely multifactorial, according to one study published in October 2020 by the American Gastroenterological Association. The study reviewed differences in IBD development and progression among patients of different races and ethnicities, pinpointing disparities like access to IBD specialists, delays in diagnosis, insurance coverage, and perceptions of the disease. Stacy Cavagnaro, RD, with the Inflammatory Bowel Disease Medical Home at Cleveland Clinic, emphasizes that resources may play a role in delayed diagnosis and advanced complications seen in minority patients. “Inability to see a registered dietitian, expense of nutritional supplements, and lack of resources and social support to undertake restrictive diets to improve the disease process also puts those [patients] at a disadvantage.” She says that improved access to telehealth services, greater representation of minorities in gastrointestinal-IBD teams, and increased education are all essential to advancing health equity.
Getting Involved With Community Connection
It’s initiatives like Community Connection that are raising vital awareness. Omprakash encourages people, particularly newly diagnosed women of minority descent, to check out their blog and join the live discussions. The group recently held a Facebook Live for Ramadan on how to fast with IBD, and more content on being queer and living with IBD is in the works for Pride Month in June. “You can also reach out to Girls With Guts and join a support group or think about attending the Girls With Guts virtual retreat in May,” says Omprakash. The Community Connection team will be hosting several breakout sessions. Pestaña adds that the virtual nature of these events also increases accessibility. “If you’re in hospital or on bedrest, you can still tune in!” The team is excited to expand, and this comes with a sense of hope. Pestaña says, “The more stories we tell, the more we can end stigma, the less people will feel alone and excluded.”
