Although I have made a film about life with an ostomy, I do not have one myself. It was my grandma who introduced me to the experience of having an ostomy in India.
Grandma’s diagnosis
Back in 2012, my grandma was diagnosed with rectal cancer. As we were trying to wrap our minds around this, we were informed that she would need an ostomy surgery to save her life. None of us had heard of an ostomy before. The doctor explained it to us the best way he could, but all we could hear was that it would save her life, and we were completely onboard with it.
Once the surgery was done, my grandma had to live with it. She found it difficult to accept her new reality and started going into depression. If we tried to console her, she would lash out, saying ‘You don’t have it, so you don’t understand!’.
Poster for No More Secrets
Doing the research
What she said was true. So, I began researching online for others who have an ostomy. I came across a few YouTube channels and plenty of people who had come out and spoken about their ostomies, but none of them were from India. How was my grandma supposed to be able to relate to any of these people?
I spoke to the people at the Ostomy Association of India and found out that more than 300,000 people (or three lakhs, as we say) are living with a stoma in India. And these are only the ones who registered. It made me wonder, if there were so many ostomates, why nobody was talking about it. This is the question that plagued me.
Facing the stigma
In India, ostomies are still not widely spoken about. However, there are now many ostomates who are working tirelessly to ensure that people like them are seen by the government and by healthcare providers. Despite this, many Indian ostomates feel there is a stigma on them. They often refuse to talk about their problems and instead imprison themselves behind walls of shame. This is very harmful, as it prevents people with a stoma from rehabilitating into their new life.
The Ostomy Association of India invited ostomates to a launch screening in Mumbai
Getting started
After my experience with my grandmother, I knew I wanted to create something that will raise awareness about people with an ostomy in India. I am a filmmaker, but it took me a while to be sure of how to go about doing this.
In the end, I spent 5 years researching a project that took just 10 days to shoot. I believe that, if you want to help a community, first you must understand the problems that the people in that community face.
Opening up
The ostomy community in India is very tight knit, and, initially, it was hard for me to earn their trust. However, once I explained that I was making a film to help my grandma and people like her, one by one, the ostomates I spoke to began to welcome me. As I got to know each one of them as individuals, I was filled with amazement at their stories and the challenges that they had had to overcome.
Each of their journeys was unique, but the one thing that brought them all together was a desire to help others like themselves. Many of them devoted much of their own time and energy to talking and counselling new ostomates into life with a stoma.
Sweet release
My film, No More Secrets, was released in January 2018. With the assistance of the Ostomy Association of India, we invited many ostomates for a special screening at TATA Hospital in Mumbai.
The response was amazing. For me, the feeling of 5 years of research and hard work culminating in this one point was beyond words. However, the best part was seeing the glow on my grandma’s face as she was celebrated by the Association for being one of the first people to speak up and show their ostomy in a film. She did what most people in her position would not do, and that’s kudos to her.
Anisha’s grandma was centre stage
Breaking the shame
As I don’t have a stoma of my own, I am not in a position to give advice. However, I can say this: once my grandma started talking about her ostomy, her depression went away, and she found a new zest for life. The more she spoke about it, the more normal it was for all of us, and in turn it became normal for her as well.
I saw the same thing happen to the star of my film, Parul. At the beginning of the shoot, Parul was shy and found it difficult to talk about her ostomy or the troubles it caused her. However, as the days went by and the more she spoke about it to others, I came to see her confidence bloom. Seeing the difference it made in her life has meant that my film has achieved what I hoped it would.
Into the future
Before I had begun shooting, I launched social media pages on Facebook, Twitter and Instagram under the name The Secret Bag. These pages received a lot of attention and have now become a kind of bridge, connecting ostomates in crisis to doctors, nurses or other people with a stoma.
Right now, I am still working to spread awareness and help as many people as I can.
Anisha Vijayan is a filmmaker based in India