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!”
“The messages were resonating with others, and the awareness was impactful.”
June 7th, 2012 was the day my life changed forever. After a routine colonoscopy, I was diagnosed with colorectal cancer. Stage 3 was the initial thought. I was told it was aggressive due to the fact that my colonoscopy a year and a half earlier related to Crohn’s disease was the cleanest ever, but now my colon suddenly had a 13 cm tumor within it.
The next few years are a roller-coaster of ups and downs. I had hospital stays, infections, septic shock, and multiple surgeries including surgery for an internal J-Pouch. I was declared cancer free, but the challenges of life were even harder now. Ultimately, following more unexpected complications and another episode of septic shock, I ended up with another temporary ileostomy. Reversal probability was slim. After 2 years of starting to live life again without the stress and pressure of knowing where the closest restroom was and after a lengthy discussion with my surgeon, in December of 2016 my ileostomy was made permanent.
As my body healed, I started working to advocate for ostomy awareness. I connected with a whole community I did not even know existed. I found the local Houston Ostomy Association support group, I participated in a body image fashion show at MD Anderson, and I went on a surfing trip with a group of young adult survivors. That’s where my ostomy got named “Fill.” My forever companion finally had a name, and one that was very fitting. Fill was baggage I was proud of and I knew I had found a home in the ostomy community and had a story that needed to be told. I had so many preconceived notions about ostomies that I wish I had had someone to talk to about when I was first diagnosed. They might have helped me realize that an ostomy was not a horrific thing, but in fact it saved my life, but also gave me my life back. Once I healed from my surgery in 2016, I started going on adventures again and doing all the things that my internal J-pouch simply did not allow.
I had been volunteering at MD Anderson for some time when the hospital asked me to join their ostomy support team. My responsibility was to assist other patients who were having ostomy surgery that wanted to talk to someone who had gone through the journey that they were about to start. This made me even more motivated to raise awareness, and so I did through my social media. It wasn’t really until Covid-19 hit that I turned to a new social media platform, TikTok, to reach even more people and disseminate information and break the negative stigma associated with ostomies. If I could reach one person, then it would all be worth it. At that point, people knew I had an ostomy but I had not really publicly shown it. Well, I finally did on TiKTok and the response was overwhelming and so supportive. I knew I had found the platform to reach thousands of people. In one year, I went from a few hundred followers to over 14 thousand and have posted videos with messages including common myths associated with ostomies, body image, naming your ostomy, dressing with an ostomy, and living a normal life with an ostomy. My highest viewed ostomy video had 1.2 million views! The messages were resonating with others, and the awareness was impactful.
My message to others is simple, I can do ANYTHING I want, and my ostomy will not stop me. Fill saved my life, and I would not be here writing this if ostomies did not exist. I plan to talk to as many people as I can to motivate them to share their stories, spread a positive message and remove the stigma that ostomy surgery has.
In 2012, at the age of 51, my first and only colonoscopy revealed 100 polyps embedded throughout my colon, rectum and anus. Gene sequencing DNA testing confirmed the rare gene mutation, attenuated familial adenomatous polyposis (AFAP), which is an autosomal dominant germline mutation. It’s estimated to impact less than 0.03% of the global population. Any polyps left unattended had a 100% chance of developing into colon cancer. Based on the best practices of medicine total-proctocolectomy with a permanent ileostomy surgery was needed and successfully performed. From the onset I embraced the diagnosis and life as an ostomate.
Now my life’s focus as a colon cancer survivor, having a rare gene mutation and an ostomy is to be a role-model for the importance of early detection. It’s also important to me to show that life can go on having an ostomy and spread the message that my ostomy saved my life. I’m an advocate for United Ostomy Associations of America (UOAA); National Organization for Rare Disorders (NORD) and local Ostomy Support Groups along with numerous colon cancer organizations. As a result of being an advocate locally, nationally, as well as internationally, I have the opportunity to raise awareness and be a source of inspiration and encouragement.
Over the years, I have found many ways to raise awareness. It’s been an honor having my respective Governor’s; Mayor’s and Commissioners Courthouse’s issuing proclamations proclaiming Ostomy Awareness Day citywide, countywide and statewide through the years. I’ve also been a life case-presentation for Tripler Army Medical Center, Hawai’i and University of Texas Health, San Antonio, Texas as well as UOAA Affiliated Support Groups in Hawai’i; California; Idaho and Texas. The following publications: Phoenix magazine; Rare Revolution magazine, based in the UK; WOCN Society magazine and Ostomy Canada Society magazine, based in Toronto have published articles on my journey. In addition, I have been an invited guest on these podcasts: The Ostomy Association of Ireland’s “A Bigger Life”; Colon Cancer Prevention Project and Colon Cancer Alliance. Most recently, I have been sharing personal memes on social media to raise ostomy awareness such as those provided for this story.
I believe that maintaining a positive attitude allows a better opportunity to overcome adversity. After 5 decades on God’s green earth, my positive attitude has brought me this far in life, so why change now. Here’s my analogy of LIFE and BASEBALL. What do they both have in common? Neither has a time limit. When a baseball game goes into extra innings, I think of it as FREE BASEBALL. That said, my life, as a colon cancer WARRIOR with a permanent ostomy, is like free baseball.
“My illness was one of the greatest gifts of my life. I consider it an honor to encourage, inspire and give HOPE to ostomy patients each and every day.”
Rolf Benirschke was a placekicker in the NFL for the San Diego Chargers. His third season in 1979 was cut short when he collapsed on a cross-country team flight while battling ulcerative colitis. He would need two emergency surgeries within six days as his life hung in the balance for six weeks in the intensive care unit. He left the hospital with two stomas – a functioning ileostomy and a mucous fistula colostomy.
It was Rolf’s faith, personal drive, family and teammates that encouraged him through those darkest hours and aided in his triumphant and improbable return to the NFL. He played four seasons with a traditional ileostomy. Back then the media was very interested in his recovery and after interviews Rolf would receive many letters from patients who were desperate for information and hope. And almost all the letters began the same, “You’re the first person I have heard of who has an ostomy. How were you able to play football, and can you give me some advice on how I can return to school, go to work, travel, etc.?” The more patients he spoke to the more he realized that he needed to do something to help others understand that there was life after ostomy surgery…an abundant, fulfilling, and happy life.
Following his NFL career Rolf devoted his life to patient advocacy and to sharing his amazing story to destigmatize this life-saving surgery and inspire thousands of people. He has written three books: Alive & Kicking, his autobiography, Great Comebacks from Ostomy Surgery, and Embracing Life, which feature inspirational stories of people who have survived and thrived following their ostomy surgery. He is the founder of Legacy Health Strategies to help medical device and pharmaceutical companies better engage with their patients. In 2017 he launched the Grateful Patient Project and created National Grateful Patient Day which is celebrated every September 7, the day he returned to play after his illness. He also created the Grateful Ostomate project, a place to collect stories and provide information to help every ostomate and their family members embrace the journey that is ahead of them – not filled with fear and anger and despair, but with courage and hope.
Rolf was a candidate for a Kock Pouch that is an internal reservoir made of small bowel that is emptied by inserting a catheter through a small, flush stoma. It is known as a continent ileostomy or internal pouch. That is what he lives with today.
Read more about Rolf’s story here.
I have two permanent ostomies (colostomy and urostomy). At the age of three years old I was diagnosed with a rare form of cancer – Rhabdomyosarcoma. My ostomy surgeries saved my life. Imagine growing and accepting this is how my life will always be. Fortunately, I was blessed with amazing parents for instilling in me a deep sense of faith that helps me to stay positive mentally and emotionally. I am also grateful for organizations such as UOAA and the WOCN Society to help guide us in care and live better with our ostomies.
As I grew older I discovered I would not let my ostomy run or dictate my life. I am so much more than my ostomy. I have even been a fashion model for 19 years. I decided to share my story with the world and now my journey has gone viral. That is just fine by me. I want people to know, especially the ostomy community, that you should live your life to the fullest extent. Get back to the things you enjoy. And yes, even dress how you want. Don’t be afraid of being the best person you can be with your ostomy.
Furthermore, in my efforts raising ostomy awareness I want to help heal and encourage others. People now label me as an “ostomy inspirer”. I take that title seriously. It tells me people are paying attention to my message. It is important to give others hope as someone once gave me. I am learning through my journey that things happen in life, good and bad; however, we all have the ability to overcome and make a difference through advocacy.
I raise awareness through my transparency and being open. I give back by empowering others when I speak out in my own ostomy support group (Osto Beauties), and by being active on social media. I take advantage of opportunities to share my story, and when people reach out to me I offer encouragement and answer their questions. I like to educate ostomates and also refer them to ostomy.org. Lastly, I am proud to be a Board Member on my UOAA Affiliated Support Group where I can make an impact in my local ostomy community and neighborhood.
People can find me online here:
Facebook: Jearlean Taylor
One of my favorite quotes is:
‘Set aside the pains of the past, enjoy the blessings of the present, and look forward to the promise of the future.’
We can’t go back to yesterday nor can we change it, we can only live for today and make it better than yesterday. Being an ostomate is hard and it is a life change experience. But for me as long as I stay involved and am able to tell my story to other ostomates it helps me to accept the person I have become. It’s a new me just carrying a little more extra baggage in a good way. I do a lot of volunteering on my own to bring awareness to how the UOAA organization helps persons living with an ostomy or continent diversion. I am a double ostomate that likes to have fun and to let others know you can enjoy life with an ostomy and that they are not alone.
*Story compliments of The University of Arizona Cancer Center at Dignity Health St. Joseph’s Hospital and Medical Center Annual Report, 2016.
It is very important to me to raise awareness of Ostomies because mine has given me back my life! After 23 abdominal surgeries over 23 years, having Lily, my stoma, has freed me from monthly visits to the emergency room, the ability to plan and travel, as well as sometimes annual surgeries. I haven’t felt as well in decades, and my appreciation to the medical community, including my Ostomy and Wound Care Nurses, is so very genuine.
The knowledge that I am strong and powerful is in total contrast to the feelings of impotence that followed me for so many years. This is the message I want others to have, and the feelings I want other to have!
I have written articles on my positive experiences as an ostomate for magazines: The Connection, which has a several thousand readership throughout northern central New Jersey and The Phoenix, which is the magazine for Ostomates.
As president of our Ostomy Support Group out of Overlook Medical Center, Summit, New Jersey, I have seen our numbers more than double in the three years since I have become an ostomate. We have had a number of prestigious medical personnel speak with and educate us, and we have taken the opportunity to educate them, as well. Our speakers have come from the following sub-specialties: emergency room, colo-rectal, gastro-enterology. general surgery, urology, thus far.
We need our own space at the Medical Center, and with the support of our Ostomy and Wound Care Nurses, we are advocating for an Ostomy Clinic as dedicated space. Presently, we are only able to get meeting time one hour every other month, and if there is snow, etc., we may not see each other for 4 months. As our group grows, by the time we embrace new members and introduce ourselves, there is very little time for our speakers, etc.
As a trained member of the Visitor Program from the UOAA, I speak with and visit many future and new ostomates. I have studied the various procedures and feel comfortable supporting them and their families. I have even taken a young woman to purchase a new wardrobe and have a fun lunch after finally leaving the hospital.
Whenever I am approached by a new or future ostomate, I follow up with an email, immediately place them on my mailing list, ask what we, as a group, and I as a caring person, can do for them to assist in their transition.
*I am submitting this photo because educating someone may come in the most unique of places! I was sharing an evening with life-long friends and their daughter and her husband and children. They were all in from California and we were preparing a meal together. Their son-in-law, Jason, who I barely knew, began to ask me questions about my ostomy and stoma. He was so interested, I took out my bag of supplies always housed in my handbag. I showed him how the bag attaches with the appliance, told him of Napoleon Bonaparte’s ostomy bag being rumored to be made of a goat’s bladder, and that is rumored to be why he holds his hand in his uniform. The more questions he asked, the more animated I became and the more information I was able to provide to not only Jason, but the other 4 adults. Fortunately, they are not in need of an ostomy, but in the future, they very well may know someone who is!