Leslie and her husband Tony raise ostomy awareness together. They have a personal connection since Leslie is a former ostomate. When she was 16 she had a cancerous tumor attached to her rectum/pelvic area. Leslie shared that after 9.5 hours of surgery to remove the tumor, her parents mentally prepared that they would have to tell her that she has all plastic organs from the waist down. “Fortunately, I only woke up with a colostomy!” Surgeons only needed to remove part of her colon and no plastic organs! Ostomies are literally lifesavers. After eight more surgeries to repair a lot of damage that the tumor caused, her “plumbing” was reconnected. As of this writing, it has been 30 years since this occurred in her life. Even though she only lived with an ostomy temporarily, it had a profound impact on her life. She made ostomy-patients’ experiences in healthcare the focus of her doctoral research because she was curious about the way that ostomy-patients were treated after surgery from healthcare practitioners, considering the stigma associated with an ostomy bag. “I expected to find experiences similar to my own when I was an ostomy patient—patient-centered, caring, and helpful. Unfortunately, not all medical practitioners were this way and instead, further stigmatized patients by their verbal and non-verbal communication.” If you’re interested in reading about the study, go to the PEWPStudy.com website or read our publications on these patients’ experiences.

Leslie and her husband Tony are motivated to raise ostomy awareness because of the ignorance surrounding the issue. Tony explained, “Ignorance not in a negative way, but simply because we aren’t exposed to individuals who have undergone ostomy or continent diversion procedures. This ignorance, in my mind, leads to quite a lot of the stigma associated with ostomies.” By raising awareness they hope to initiate conversations and thereby reduce the stigma.

Tony participates in the iRacing community. He painted his virtual racing car to raise ostomy awareness because he has a captive audience. He races two to three times a week. When you are following his car in a race, you have to read the back of his car, which now says “Ostomies are life-savers”. It is Tony’s hope that “just reading that message will break a little of the stigma surrounding the topic of ostomies.” Check out his car in the photos below.

In addition to her published research, over the years Leslie has raised awareness in many different ways such as creating an ostomy display for an art entry in graduate school. Leslie also shared another simple way she breaks stigma: “When I watch tv shows, and the scene portrays an ostomy in a negative light, I email the show and let them know that portraying ostomies negatively is not okay and explain why.” One recent example was a scene in Shameless; I emailed Showtime and they replied: “Thank you for contacting us about Shameless. We have passed your comments on to the appropriate parties within our company. Please know our objective is to bring the very best programming to our subscribers, so we appreciate you bringing your concerns to our attention.”

Tony wants to share this message with others, “An ostomy should not mark someone as ‘different’ in a bad way, in the same way a pacemaker for your heart does not mark someone as ‘different’ in a bad way. Having conversations about how we perceive people who have undergone ostomy surgery can only decrease the ignorance surrounding the issue, and lead to increased acceptance of those people. Just because something is different from what you know, doesn’t mean it is bad!”