Cracking The Ostomy Secret

It has been 7 years since we got the shocking news and our lives have changed since then. In 2011, my grandmother got diagnosed with rectal cancer. That horrible soul-sucking disease. She went through months of chemotherapies and hospitalizations and suffered a lot. Our family tried to cope by being strong for her but it was taking a toll on all of us as well. Then one day the doctor came to us and urged us to go through a surgery that was life altering but is also a choice between life and death, leaving us with no other option than to go ahead with it. After the surgery, my grandma started making a speedy recovery and we could finally see hope at the end of this long and arduous tunnel. Today, she leads an active lifestyle and has adapted to her new lifestyle. This surgery saved her life. This surgery is called an Ostomy.

More than 3 Lakh Indians live with an Ostomy and roam among us, but we have no idea about their struggles. Just yesterday I was contacted by an ostomate who has had the worst hand dealt in life. He doesn't get any gainful employment as he is considered an untouchable and even his wife divorced him because of it. How is a person to truly accept their situation and learn to live with this new lifestyle? 

For the uninformed, Ostomy is a kind of life-saving surgery that involves a surgically created stoma on the abdomen through which bodily wastes pass through into a prosthetic known as a ‘pouch’ or ‘ostomy bag’ that is fitted on the outside of the body. Due to birth defects, cancer, inflammatory bowel disease, incontinence and many other medical conditions, an Ostomy can be performed. In cases of severe abdominal or pelvic trauma due to accidents or from injuries sustained during military service, an Ostomy becomes a necessity. 

There is no age limit to getting this surgery and actually, in a way, increases your life expectancy. Getting an Ostomy is the beginning of a new normal. 

But there is a need to start a national conversation about Ostomy. There is a need to break this stigma that surrounds it. 

The more this is spoken about the more benefits there are to the Ostomates themselves, the society and even the healthcare professionals. 

Benefits to Ostomates

- Helps in the rehabilitation of Ostomates

- Helps Ostomates get better understood

- Helps destigmatize Ostomy in their minds

Benefits to Community

- Create and increase awareness about the existence of Ostomy and Ostomates

- Help increase compassion among the society for each other

-  Helps destigmatize Ostomy for the environment that Ostomates live in

Benefits to Healthcare Professionals

- Help prioritize Stoma care 

- Sponsor Ostomy after-care training for nurses

- Increase the number of stoma care clinics

A person with an Ostomy, if not rehabilitated properly, can experience a poor quality of life along with feelings of stigmatization, degradation, and isolation. A new Ostomate needs to know that they can lead productive lives but unfortunately, the focus when considering an Ostomy is only on the excreting into a bag part. 

There are a lot of Ostomates who live a happy and full life in spite of their Ostomies and their life needs to be shown as examples of how living with an Ostomy is possible. So all those who are reading this and are able to live fulfilling lives with their Ostomies, please do come out of your secret caves and speak up. Through your experience, you can help someone else. 

Below is a documentary I directed which follows the journey of a girl as she finds courage to speak up about her Ostomy. I hope it inspires you to do the same as well.