An Ostomy Turned This Pro Athlete Into a UC Advocateby Jackie Zimmerman Patient Advocate
Having ulcerative colitis (UC) in the ‘70s almost prevented Rolf Benirschke from going on to become the all-time scoring leader of the San Diego Chargers — as much for the hospitalization it caused as for the cultural taboo around the pouch attached at his abdomen, there for bodily waste to pass through, called an ostomy.
After his recovery, Rolf had to navigate his new life with an ostomy and figure out how to play football again. He got back in the game, but he didn’t stop there — Rolf became a vocal advocate for IBD, helping to fight the taboo and normalize ostomies.
HealthCentral talked to Rolf about his journey as an athlete with UC and how he made it his goal to battle ostomy stigma and connect with other patients.
HealthCentral (HC): You were among the first professional athletes to play openly with an ostomy. How did you make the choice to share your story with the public?
Rolf Benirschke: Yes, I was the first professional athlete to wear an ostomy appliance while playing. It was especially noteworthy given that football is such a physical sport. I was very reluctant to share publicly the exact details of my operations. I was happy to talk about IBD and surgery and the long and difficult recovery, but I would always stop short of saying I was now wearing appliances. It wasn’t until I was partway through my comeback season of 1979 that I made the decision to open up about it, and only then because a nosy reporter forced the issue in a live interview. I was a little uncomfortable revealing everything because I was single and not sure how that would be received and, let’s face it, bathroom issues are not exactly dinner table conversations.
HC: Was your place in the NFL ever at risk because of your UC or later because of your ostomy?
Rolf: When I returned to the team to try to earn my job back the next July in training camp [after my surgery], few people knew I was wearing ostomy bags. They all knew I had had surgery but didn’t understand the specifics.
I never expected to play again. Football was never a thought… it was initially just trying to recover and figure life out. At the time, in 1979, few people were talking about IBD and nobody was open about ostomy surgery.
HC: What was the response like after you shared your ostomy with the world?
Rolf: That first year back, because of the visibility of the NFL, there was a lot of interest in my comeback and, on almost every away game, the local sportswriter or TV anchor would do a story about what I had gone through with UC. There was a tremendous amount of support sent my way via letters, flowers, prayers, and more during my hospitalization. Wherever those stories appeared, patients or family members of patients would read them, and many would write me a letter and I would find them piled in my locker the next week.
One of the biggest guys on the team came up and shared that his mother had an ostomy, and I remember him saying, “Man, you’ve got guts to keep playing,” to which I tried to lighten the situation by saying, “Well, not as many guts as I used to have.” He was wonderfully supportive and that cleared the way for other teammates to come up and ask questions and try to understand.
"One of the biggest guys on the team came up and shared that his mother had an ostomy, and I remember him saying, 'Man, you’ve got guts to keep playing,' to which I tried to lighten the situation by saying, 'Well, not as many guts as I used to have.'" — Rolf Benirschke
HC: You have an impressive resume in advocacy. What are you doing now on the advocacy front?
Rolf: Nine years ago, I took a leap of faith and started a patient engagement health care company to assist pharmaceutical and medical device companies better engage with their patients. We might’ve been a little ahead of things then, but now every stakeholder in health care needs to understand and better connect with their patients. To do that, they need to understand how we patients think, answer the four unspoken question I believe every patient asks but doesn’t articulate, and understand we are “consumers” now who are more informed and connected with other patients than ever before… and we want to be involved in our healthcare.
Since I consider myself the most grateful patient, I wanted to create a community of grateful patients like myself to share their stories and encourage one another, so I founded the Grateful Patient Project and the Grateful Ostomate. It brings me great joy to be able to share those stories within the medical community with pharmaceutical companies, medical device companies, medical professionals, hospital systems, and others.
HC: What are you most proud of in regards to your advocacy?
Rolf: While it was a little difficult at first for me to really open up about my ostomy, pretty soon it became a mission and a calling and it changed the course of my life. There has been nothing quite as fulfilling as being able to connect with a patient when they are in the throes of their illness and facing surgery, encourage them and maybe send along my autobiography, “Alive & Kicking,” or one of the other ostomy story books I have written, and then hearing back from them months later when they are back to doing what they never thought they would be able to do again.
There are a lot of things I am excited about and appreciative of from having walked on the Hill numerous times, speaking before Congress on hepatitis C issues, working with colorectal surgeons and wound, ostomy, and continence nurses to change the way ostomy appliances were classified and more. But the thing that still drives me the most is connecting with individual patients and encouraging them along the way.
[Interview has been condensed and edited.]