While incidence of Inflammatory Bowel Disease (IBD) among South Asians is rapidly growing, community awareness around IBD remains low.
World IBD Day is observed on 19 May around the globe as a day for raising awareness and committing to improving care for patients with Inflammatory Bowel Disease (IBD).
While India is estimated to have over 1.4 million people suffering from the debilitating effects of IBD, awareness about it scant and shrouded in a thick veil of misconceptions.
How does stigma around IBD affect patients' lives?
What is IBD?
IBD is an umbrella term that includes conditions such as Ulcerative Colitis (UC), Crohn’s Disease (CD), Indeterminate Colitis, and Microscopic Colitis.
Unlike Irritable Bowel Syndrome (IBS), a functional gastrointestinal disorder causing altering constipation and diarrhea, IBD is an immune-mediated inflammatory disease where an overactive immune system attacks the patient’s intestines, causing chronic inflammation. The cause of IBD is unknown and it is believed to be an interplay of multiple genetic and environmental factors.
UC & CD are the most common forms of IBD. While UC affects the lining of the large intestine causing ulcers, CD can affect any part of the digestive tract from the mouth to the anus and causes inflammation penetrating through the thickness of the bowel wall.
Symptoms include diarrhea, blood in stool, weight loss, fatigue, and abdominal pain. IBD can also affect other organs such as skin, eyes, joints, etc., also known as extraintestinal manifestations.
Left untreated, IBD can cause serious complications including fistulae (tunnels from the intestines to another organ or to the skin), toxic megacolon (rapid enlargement of the colon), bowel perforation and/or colorectal cancer.
While there is no cure for IBD, it is effectively treated with medication including anti-inflammatory drugs, immunosuppressants, and newer targeted biologic and small molecule therapies and surgery.
It is estimated that globally over 6 million people have IBD. Per a 2010 estimate, India has the second largest population of 1.4 million IBD patients, just behind the United States. The population of patients in India and Asia overall is projected to grow exponentially in the coming decades.
Despite these alarming figures, community awareness about IBD remains lacking and myriad challenges faced by our community go unnoticed
IBD in India – Unique challenges
Despite the growing numbers in India, we patients struggle to access gastroenterologists with specialised knowledge about IBD, the prohibitive cost of medication and poor health insurance cover.
Many of us struggle to afford routine testing like colonoscopies, scans and even first-line IBD medication.
Equally limiting is the cultural stigma around IBD, treatment options and surgery.
Symptoms like chronic diarrhea and rectal bleeding are considered inappropriate to discuss.
This taboo, along with low awareness, leads to diagnostic delays as many of us wait until symptoms become very severe before going to a doctor or hospital.
The erroneous perception of IBD as a “lifestyle disease” and societal pressures to pursue alternative therapies like Ayurveda that promise a “cure” leads to low adherence to evidence-based treatment options and acceptance of life-saving ostomy surgery.
The stigma makes it challenging for us IBD patients to get jobs, get married, or in some cases even enter kitchens and places of worship. These challenges not only affect us in South Asia, but also our patients in the diaspora.
Many of us worry about the physical toll IBD takes.
Chaitanya Pullela, a member of IBDesis, an organization for South Asians living with inflammatory bowel disease, says:
“IBD also impacts the emotional well-being of patients. However, the stigma and reluctance to acknowledge mental health issues, and the lack of mental health infrastructure in India that is sensitive to the needs of IBD patients all pose significant challenges for the patient community.”
He adds that the only way to tackle these challenges is through patient expertise from lived experience, in combination with clinician knowledge."
(Gaurav Sengupta is an IBD patient advocate from Kolkata, and member of IBDesis. Chaitanya Kiran Pullela is an IBD patient advocate from Peddapuram, Andhra Pradesh and content creator for IBDesis. Madhura Balasubramaniam is an IBD patient advocate from Chennai. Tina Aswani-Omprakash is an IBD patient advocate from New York, USA, co-founder of IBDesis.)
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