For many Indians living with Crohn's disease, the first challenge is the delay in being taken seriously when symptoms initially appear. When Tina Aswani-Omprakash first walked into a doctor's office in the U.S., she carried two things: severe symptoms and a family history of the disease. Yet she had to convince her physician that someone like her --an Indian settled abroad-- could even have Crohn's. "He thought it was a Western disease," she says. It was only after she mentioned that her father had died of Crohn's-related cancer that he reluctantly referred her to a specialist.
For Madhura Balasubramaniam, the journey began earlier, as a child with chronic diarrhoea, vomiting, stunted growth and unexplained rashes. Her tests were incomplete, biopsies misread, and symptoms dismissed. "I was finally diagnosed after more than 20 years," she says. "I had already undergone an appendectomy, lost weight, struggled with joint pain, and spent my teenage years being told this was IBS."
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Tina and Madhura describe the quiet, relentless reshaping of everyday decisions: from what to eat and how far to travel from a restroom to which jobs are feasible and whether friendships will survive the unpredictability of symptoms. For Tina, life in the U.S. meant discrimination at work and within her own community: "Many people didn't want to hire me. I couldn't return to Wall Street or pursue a demanding degree. Even in marriage, my husband was told not to be with someone 'as sick as I am.'"
Madhura, who worked in qualitative research in remote field sites, found her diagnosis suddenly limiting her world. Fieldwork became impossible. Friends assumed she was exaggerating an illness they couldn't see. Family members pushed alternative systems of medicine, assuming she only needed 'more discipline.'
This pushed them to spent years modifying diets without the structured, culturally competent guidance they needed. J. Saravanan, senior consultant surgical gastroenterologist at VS Hospitals, Chennai, notes: : "Patients who come to us have already tried everything-- home food, curd rice, 'avoiding spicy food,' antibiotics from local clinics. Symptoms go away, come back, hit harder. By the time they reach us, they are tired, scared, embarrassed."
The diagnostic delay is partly cultural (bowel symptoms are treated as shameful) and partly clinical: Crohn's in India closely mimics intestinal tuberculosis, leading to misdiagnosis and months of ineffective TB treatment. Mohamed Bilal Azam, consultant gastroenterologist at Rela Hospital, Chennai, says, "Crohn's in India walks a confusing path. Many patients first undergo anti-TB therapy before anyone recognises what it really is." Doctors say that colonoscopy remains central, aided by blood tests, stool markers like faecal calprotectin, and increasingly, intestinal ultrasounds.
For treatment, steroids are only a temporary relief. Long-term control relies on immune-modifying drugs and, increasingly, biologics , which can be transformative. "I had a young man who wore a jacket to hide how lean he had become," says Dr. Saravanan. "Eight months of biologics later, he walked in confidently after getting a new job."
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Beyond medication, patients need a system that can recognise invisible suffering. "The biggest support," Dr. Saravanan explains, is someone not saying: 'It's all in your head. Most Indians with Crohn's look outwardly fine, leading to dismissals in workplaces, schools, friend circles and even inside families'. Madhura recalls hospital nurses assuming she was dying when she had a feeding tube placed -- unaware that it was life-restoring, not terminal care. Tina describes the stigma around ostomy bags: "People think it's disgusting. Emptying the bowels is part of the human experience."
Patients often confront misconceptions: that Crohn's is the same as IBS; that diet alone can cure it; that the patient somehow caused the disease. Tina and Madhura's advocacy work, called -- Own Your Crohn's, IBDesis, and the South Asian IBD Alliance (SAIA) were born out of this dismissal and isolation.
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Crohn's demands long-term treatment: regular blood tests, imaging, colonoscopies, biologics, nutritional support, and sometimes surgery. But for many Indians, the real barrier is money. "Insurance only recognises a hospitalisation cost, not prevention," says Dr. Saravanan. "Biologics cost lakhs. Parents skip their own medicines so their child can get a dose. A groom postponed his wedding because he didn't want to look frail."
Madhura, meanwhile, has been rejected repeatedly for personal health insurance. IBD is marked as a permanent exclusion under many policies. She pays out-of-pocket for routine care, even as biologics and nutrition formulas strain her finances.
Government schemes such as PMJAY do not yet consistently prioritise IBD. For a lifelong disease, this gap in coverage determines whether patients can work, study, marry or simply survive.
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While the healthcare system is still catching up, patients are building what they never had: community support. Patients networks are working closely with gastroenterologists, psychologists and dietitians to create culturally relevant education.
Doctors, too, note the shift."We are listening to patients," says Dr. Azam. "Research is focusing on Indian patterns -- diet, pollution, antibiotic exposure, stress. Clinical trials are expanding. And awareness is rising, though slowly."
As experts highlight, "Crohn's disease does not announce itself. It leaves no cast, no bandage, no external marker that tells the world a person is living with chronic inflammation, malnutrition, pain, and fear but this Invisible illness does not mean insignificant illness, continous care is important here".