How I’ve Shared my Ostomy Journey Across Cultures and Countries

Brenda Elsagher talks about how ostomates of all colors, creeds, and ethnicities find themselves on common ground.

Read Brenda’s story about how ostomies are the great leveler.

Diversity is a hot topic these days, and recently I asked a Wound, Ostomy, and Continence (WOC) Nurse if people of different colors and cultures have different colored stomas. Her answer was that unless their colons are unhealthy, most stomas are usually anywhere from pinkish to deep red.

I have visited with many people around the world and have interviewed hundreds of people for my books, but not one has ever told me anything about their ostomy being different. Does your stoma have rhythm? Is your stoma good at math? Is your stoma emotionally stoic? Does this stoma make me look fat? Sounds ridiculous doesn’t it? We make assumptions about people and often engage in silly stereotyping, and it doesn’t get us anywhere. I prefer to be curious myself. I love learning about others instead of fearing what I do not know. That’s why ostomy support groups are so helpful.

When someone comes to a United Ostomy Associations of America (UOAA) support group meeting, they will often see racial and cultural diversity in the attendees. However, in our discussions, we are mostly concerned with how things are working with our ostomies; our differences in color or ethnicity usually take a back seat to our shared experiences. I have heard support group members talk about their personal shyness and the awkwardness in their cultures when they engage in conversations around ostomies…and almost all people with stomas can relate to that.

When I first started talking publicly about having an ostomy and urging people to get a colonoscopy, I used to make the audience shout out the words, “Rectum, rectum, rectum!” This was specifically so I could talk about the subject without shocking people. Once they said it aloud, it broke a taboo.

As I was writing my first book If the Battle is Over, Why Am I Still in Uniform? I read some of it to my husband, who is from Egypt. I wanted to make sure he was OK with me revealing certain details about our personal life. I read to him the part about my diagnosis of colorectal cancer and how the doctor explained that I would need major surgery – which included a permanent colostomy, the removal and reconstruction of part of my vagina, and a complete hysterectomy. “Whoa,” he said. “My family is going to read this, and in Egypt we can’t even talk about shaving legs in mixed company. No way can we talk about our sex life!”

A good discussion followed. We determined that it was more important to help others who might need this book than to worry about what his family might think if they read it. And I know my husband would want you to know that even with that drastic surgery, everything turned out all right (wink wink!). It’s been 32 years and counting so far…

Writing books and becoming a national speaker led to 24 years of talking about bowels and butts. A couple of years ago, I was on my way to South Africa and our plane was delayed in Nairobi for six hours, so I took advantage of a private bathroom at the airport. I asked a maintenance worker to help me find a big bottle of clean water, requested use of the bathroom for an hour, and tried to explain my medical condition. I don’t think she understood anything about colostomy irrigation, but the $5 I gave her was good enough communication. She showed me how to lock the door and I did what I needed to do.

Later in the year, we traveled to China to hike on the Great Wall. Another bonus of having an ostomy: not worrying about needing to use a non-western style restroom, which might require squatting. I worried more about my bad knees than about having a stoma! I have traveled all over the world, ridden my bike long distances, and snorkeled in the ocean – and I have never let my ostomy stop me.

Ostomies are the great leveler. Stomas don’t care what color your skin is, what socio-economic background you come from, who you voted for, or if you wear a mask or not. They just want to be a pretty pinkish-red color and do their job. They want you to be happy and so do I. They relate to another person with an ostomy with compassion and encouragement – and that’s what we all need, regardless of our diversity.