From pain to purpose: Young Crohn's disease warrior builds hope for others

Crohn’s disease, a colectomy, and now, cancer — these three Cs surround my bumpy 32-year-old life. But three other Cs — crowdfunding, caring friends and much-needed counsel — have kept me alive. I have lost my formative years to debilitating disease, and I don’t want anyone else to lose out on precious time.

It was July 2013. I was a 20-year-old pursuing a BTech in mechanical engineering from Delhi College of Engineering. During the last leg of my college internship, I began having recurrent fever, diarrhoea, vomiting and loss of appetite. I was forced to eat from outside as the place I was interning at was too far from my west Delhi home to carry cooked meals. At first, I thought it was just an infection caused by irregular eating and unfiltered water I had while on the job.

I took one antibiotic course after another, but none worked. Soon, there was blood in my stool along with severe stomach pain. In just a month, I had shed 10-15 kilos. I couldn’t even keep a glass of water in. We consulted Dr R K Tandon, a gastroenterologist who had just retired from the All India Institute of Medical Sciences (AIIMS) and was running a private practice. After a battery of tests — colonoscopy, CT scan, X-Ray, ultrasound — he diagnosed me with Crohn’s disease, a kind of inflammatory bowel disease (IBD) that makes the immune system attack healthy tissues of the intestine. I started medications in Sept 2013. The drugs worked initially, and I started regaining my health.

After I got my BTech degree in 2014, I landed a job in Vadodara as a field engineer. Months into the job, the symptoms returned, more severe this time. Dr Tandon upped the drug doses, but another colonoscopy revealed horrific pictures. He said I either need surgery or biologics (medicines made from living cells) to suppress my immune system. Biologics are by far the most advanced drugs to treat Crohn’s disease and IBD, but are prohibitively expensive. I was out of my job, back in Delhi, my weight reduced to 45kg. I was too weak to do day-to-day activities. I continued my treatment at AIIMS as it was cheaper there. I was able to take biologics, but only with crowdfunding help. And it wasn’t a lasting cure. I was in hospital every other month, with costlier biologics each time.

In 2017, I underwent a subtotal proctocolectomy with ileostomy formation — my large intestine was removed and an external ostomy pouch fitted to my stomach, where all the intestinal waste got collected. The pouch had to be cleaned and changed periodically. The radical surgery did improve things, but it was difficult to adapt to ostomy life.

Finding a job got even more difficult. The moment I mentioned an ostomy, I didn’t hear back from HR. I managed to find a low-paying night job, where I met people who motivated me to go for higher studies. I gave the GATE exam and in 2019, enrolled for a master’s degree in aerospace engineering at the Indian Institute of Science (IISc).
But surgery doesn’t fully cure Crohn’s disease. I had a relapse in 2021, first with an abscess and then a fistula, and was put on biologics again. Then, in June 2023, I got diagnosed with thyroid cancer, which put the Crohn’s treatment on hold. I’ve had two surgeries for the cancer till now. I’m praying that my IBD is at bay without drugs, at least till my cancer treatment is done.
With no formal job to pay my bills, I often have to do multiple jobs to keep things running. I’ve had a difficult childhood with domestic violence issues. And being the eldest son puts the family’s financial burden on me. My master’s degree is still pending as I’ve been in and out of hospital far too often. During those hospital stints, doctors would tell me to talk to other patients and form a support group. While at IISc, I had got The Crohn’s and Colitis Young Adults Network Fellowship from a UK non-profit, which had taught me a lot about patient advocacy in the West. Once the pandemic hit, I decided to draw on those lessons and founded IBD India in September 2021 with a few friends.



IBD India is a non-profit offering financial resources, patient education programmes, community meetups, and a mental health helpline for people living with IBD. It happens to a lot of young adults in India but is a heavily stigmatised disease with scant awareness, especially in the rural areas.
I don’t want another 20-year-old to go through what I have experienced. We regularly hold public discussions on jobs, body image issues, romantic lives and other social problems that affect people with IBD, speaking to doctors, psychologists, patients and their kin. A combination of genetics, bacterial imbalance and environmental triggers leads to IBD. But there’s enough research to show that those with the disease are more susceptible to stress, anxiety and depression, which greatly affects treatment response. Studies have also pointed to childhood trauma triggers for IBD. But there is a marked lack of mental health awareness for such patients. Society needs to be more compassionate and inclusive, I feel.

Nikhil Jayswal founded non-profit IBD India in 2021 to sensitise people about the autoimmune disease. He spoke to Srirupa Ray