Destigmatizing Ostomy Surgery: A Personal Story of Cultural Difference While Facing This Life-Altering Surgery

In 2008, I was faced with the decision to have a temporary stoma made permanent or to opt for a J-pouch continent diversion to treat my inflammatory bowel disease (IBD). As someone who struggled immensely with the decision to have ostomy surgery, there were many things I believe my medical team could have included in my care that would have aided in destigmatizing what my life would be like with an ostomy. Stigma can be present in many ways when it comes to IBD and ostomy surgery. However, being a member of a minority community, whether it be race, ethnicity, culture, sexual orientation, or gender, adds a whole other layer of challenges that many may not realize. Medical professionals can play an instrumental role in destigmatizing life-saving ostomy surgery and helping patients make the best decision for their quality of life.

In this article, I share the patient perspective on how my experiences as a South Asian American woman opting for an ostomy could have been improved. Additionally, I also sat down with Madhulika Varma, MD, Chief of Colorectal Surgery at University of California in San Francisco, to understand how she considers cultural differences in her work helping patients face ostomy surgery. In my experience, the biggest barriers to ostomy surgery were cultural. It felt to me as if my family’s concerns were never addressed or understood by the health care professionals I encountered.

Having had a father and an aunt who passed away in the early 1990s from Crohn’s disease that advanced to colorectal cancer, I knew how much they despised their ostomies. As a result of their experiences, I always thought I would hate mine, too. My family reiterated to me the concept that an ostomy is an absolute last resort. It was inculcated into me that if I had an ostomy, I would be considered unclean and untouchable, meaning that no one would want to marry me or treat me with basic respect. In addition, in my culture, there are many limitations for women during their menstrual cycles that make them feel unclean and “less than.” When a woman is menstruating or if she has an ostomy, she is not allowed into the temple to pray or into the kitchen to cook. At the age of 24, I felt devastated. I was stuck between my devotion to my culture and my knowledge that because of the diagnosis of IBD, this surgery was needed to save my life.

I believe that my decision to have an ostomy could have been made far easier without my emotions escalating to ones of devastation if there had been clear communications among my medical team, myself, and my family. It would have helped if we had been counseled on how our cultural beliefs were impacting my decision to have an ostomy. Also, taking the time to educate us about the rationale for and ultimate benefits of ostomy surgery for restoring my life would have provided the outlook that we needed to move forward in a positive way. In my meeting with Dr. Varma, I discovered this vital communication is exactly what she provides for her patients and their families.

In my conversation with her, one thing that stood out was how she understood the importance of sharing the stories of people living with an ostomy, such as the famous athlete Rolf Benirschke, patient advocate and former placekicker for the San Diego Chargers. She also talked about patients with an ostomy who had careers and were living full and happy lives. In addition, and important to me, were her discussions involving the women she has worked with who have had successful pregnancies after ostomy surgery.

“One has to be a bit creative and meet the patient where they are,” Dr. Varma emphasized. How does she do this? By understanding the patient’s needs and finding optimal solutions regarding an ostomy and, in the process, determining if there are ways to address lifestyle and quality of life concerns. She also shared, “There’s been times when I’ve given LGBTQ+ patients (particularly those engaging in anal receptive intercourse) options to preserve some or all of the rectum if not as severely diseased as the colon. I monitor the rectum closely for dysplasia or any signs of IBD.” Creating a stoma allows stool to bypass the rectal region, allowing the rectum a chance to heal. Therefore, this allows the IBD to be addressed but also maintains the area so that it can be used for sexual pleasure.

Tina Aswani Omprakash is a guest author contributor for United Ostomy Associations of America (UOAA). She is an IBD Patient Advocate & Ostomate, MPH Candidate ’23, Mount Sinai Icahn School of Medicine, New York, NY. Inquiries can be made to: advocacy@ostomy.org. Information in this article was provided by UOAA. UOAA does not endorse particular products, manufacturers, providers, or other sellers of ostomy products. This column was not subject to the Wound Management & Prevention peer-review process.