acceptance,  advocacy,  awareness,  colorectal cancer,  Colorectal Surgery,  Crohn's,  Ostomy,  stigma

No More Secrets: An enlightening film that reveals the stigma of having an ostomy in India

In a world that’s still struggling with the concept of life-saving ostomy surgery, India comes chock full of psychosocial taboos. In addition to the challenge of costly medical supplies, ostomies are widely viewed as unacceptable in this country and can even become barriers to pursuing careers and relationships.

Filmmaker Anisha Vijayan recognized the need to educate the masses about living with an ostomy in India. After months of interviews and countless hours of research and production, her documentary No More Secrets was released earlier this year. She shared with OC the inspiration behind creating the film and how it’s offering encouragement to ostomates in South Asia.

“My grandmother, Gita Menon, was diagnosed with rectal cancer in 2012. Cancer is such a strong word in India; we all thought this was the end for her,” Anisha said. She became very weak from chemotherapy, so the doctors gave her one last option for treatment — ostomy surgery. Gita regained much of her strength back after the operation, however, family members noticed she was falling into depression.

Anisha told Webindia123, “what makes it worse is that the person with the ostomy imprisons themselves with their constant feelings of shame and they stigmatize themselves.” Gita refused to even look at her stoma, let alone change the pouch, so Anisha’s aunt assisted for six months after her surgery. “She felt so ashamed of it,” Anisha said. “It was painful to watch her go through this.”

A turning point came when an ostomy nurse named Nisha came for a visit and insisted that Gita look in the mirror at her reflection and acknowledge her ostomy. The family described this moment as “life-altering” not only for Gita but Anisha too. She set out on a quest to find videos of Indian ostomates sharing their story so that her grandmother would feel less isolated. To her surprise, she found nothing. “It was at that moment I decided to go ahead and make this much-needed film,” Anisha said. “My mother encouraged me to create the documentary to bring awareness and acceptance in India.”

Anisha connected with Dr. Harikesh Buch from the Ostomy Association of India who introduced her to several ostomates in his organization. That’s where Anisha first met Parul Mistry, a young Indian woman who had urostomy surgery because of bladder disease. “I saw a hidden depression in Parul’s eyes. One that was unique because she appeared to be a very positive person otherwise,” Anisha said. Parul kept her illness and ostomy a secret. None of her friends knew, not even her best friend. She was afraid of their opinions because even her own relatives didn’t accept it; saying they couldn’t arrange a marriage because of her urostomy.

Poonam Bagai is a colon cancer survivor and ostomate who helped fund the film.

Poonam Bagai is a colon cancer survivor and ostomate who helped fund the film. Facebook: The Secret Bag

After that meeting, Anisha decided to base the documentary on Parul’s ostomy secret. She wanted so badly to free her from the stigma, saying “tell your best friend or not, but just find the courage to accept your ostomy and live your best life.” During filming, Parul’s attitude seemed to change. “The more openly she spoke about her journey, the more confident and self-accepting she became,” Anisha said.

Since its debut in January, ‘No More Secrets’ has seen a positive effect worldwide. China and Vietnam are commending the film for bringing more awareness to their countries as well. In a region where ostomates are deeply stigmatized, there is now hope for a future filled with greater awareness thanks to Vijayan and her grandmother’s story. “This is the reason I made this film; to help ostomates understand that they don’t need to live in fear of judgment,” Anisha told United News of India.

Click here to watch the film No More Secrets on YouTube.

 

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My name is Tina and I am from the NYC area. My background is in legal and compliance for financial services. Due to the severity of my Crohn's and multiple extraintestinal manifestations, I have been rendered unable to work. I have served as a case study for a number of renowned doctors and surgeons across the country. I hope that the research done on me helps current and future populations of IBD patients. In a world where the #metoo movement has erupted, I believe it is high time for patients like myself to speak up about the ravaging aspects of chronic illness and disability. The intent of this blog is to give those suffering in silence and in shame a voice that creates greater awareness and acceptance of our daily struggles. I own my Crohn's and my goal is for you to as well!