I was born with a rare birth defect called bladder exstrophy, meaning that my bladder was turned inside out. In 1969, just before my fourth birthday, I had urostomy surgery.
As a child with a stoma, my life could easily have been one of isolation and shame. But my family was committed to treating me like any other child. This would prove to be the motivation for and the foundation of a life dedicated to helping others overcome their own challenges.
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"No matter where I speak around the world, parents have the same concern: 'How can I help my child lead a normal life?' It’s my honour and privilege to give them hope that a normal life is possible."
Thomas Exler
Shortly after my stoma surgery, my mother and my surgeon founded the Children’s Tri-State Ostomy Association (Pennsylvania, Ohio and West Virginia), the first organisation in the world dedicated to helping parents of children with a stoma. I was closely involved in this organisation and grew up surrounded by other children facing serious health issues. This inspired me and taught me compassion. It also prevented me from asking, “Am I alone?” I knew there were many people just like me.
During my school years, I was the picture of the all-American boy, playing baseball, hockey, indoor soccer and Gaelic football. After college, I began my career in healthcare. Today, I work as a Sterile Processing Tech at a Pittsburgh-area hospital.
Over the years, I’ve volunteered at various medical camp programs for teens with intestinal diseases or diversions, and in 2001, founded the Young Adult Network, which was part of the United Ostomy Association.
I’m currently a consultant and board member of the Pittsburgh Ostomy Society, as well as a non-profit called Jamie’s Dream Team which helps make dreams come true for children and adults with life-threatening illness or trauma. I’m also the board vice president of the Association for the Bladder Exstrophy Community, an international support network of people with bladder Exstrophy.
In 2010, I founded Courage to Shine™, an award program to recognise and support people born with genitourinary birth defects. Later in June of 2010, I took this program to Australia and again in 2011 to Iceland and United Kingdom, where I led a team of patient role models to attend the Breakaway Foundation’s annual event. Breakaway is a program for young people ages 4-18 living with a bowel and/or bladder diversion or dysfunction.
And in 2012, I spoke at the ASEXVE (Asociación española de Extrofia Vesical, Cloacal y Epispadias) Medical Conference in Spain.
In 2014, I suffered a stroke, but have successfully recovered and am back to my passion of helping others. Because of this, I received the 2015 Jefferson Award, a nomination for the Everyday Hero Award, and a nomination for the 2015 RARE Champions of Hope award.
I didn’t ask to have a stoma. But I’m living proof that it doesn’t have to stop anyone from doing what they want to do. I’ve been given a rare opportunity to meet amazing people all over the world—solely because I was born with a birth defect. My life has been blessed and I hope to continue sharing those blessings with others.
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Featured Articles
10/10/2024
me plus Community
Travel
Travelling with a Stoma Bag: What to Pack
The idea of taking long trips with an ostomy may seem daunting at first. But with a little extra preparation, you can enjoy the trip of a lifetime! Here’s our tips below to help make packing for your next adventure a little easier.
Read more04/12/2024
Everyday life
Travel
Road Trips with a Stoma
Now that you have an ostomy, the idea of taking long trips can seem daunting. But with a little extra preparation, you can enjoy the trip of a lifetime.
Read more11/12/2024
Travel
Stoma Travel Tips
Extra security precautions are being taken at airports and other transit hubs worldwide. A little pre-planning and understanding of both security rules and your right to privacy can help you avoid problems in transit and enjoy your travels.
Read more12/12/2024
Diet
Everyday life
Living with a Stoma: Hydration
Learn about the importance of hydration when living with a stoma. Our guide provides tips on fluid intake, recognising dehydration symptoms, and more.
Read more12/12/2024
Fashion
Fashion Tips for Men Living with a Stoma
After stoma surgery you can wear the same clothes as anyone else – and do it with style! Here are some fashion tips for men living with a stoma.
Read more11/12/2024
Fashion
Fashion tips for women living with a stoma
Here are some practical fashion tips from Jearlean Taylor, a successful model, author, and businesswoman who has never known life without an ostomy.
Read more16/12/2024
Everyday life
Tips for Managing Anxiety After Stoma Surgery
One of the biggest worries for people who have recently had stoma surgery is what other people will think.
Read more16/12/2024
Everyday life
Returning to Work with a Stoma
From industrial jobs to the classroom, from long shifts at the hospital to dancers – and all workplaces in between – people living with a stoma are successfully returning to work following stoma surgery.
Read more22/01/2025
Everyday life
Back to school with a stoma
As your child begins to recover from ostomy surgery, it is normal for them to feel fearful or anxious about their needs when going back to school.
Read more11/12/2024
Activity
Exercise After Stoma Surgery: Back to Basics
No matter what level of physical activity you want to pursue, stoma surgery shouldn’t hold you back.
Read more12/12/2024
Everyday life
Bathing or showering with a Stoma
Showering or bathing with a stoma should not interfere with your regular cleaning routine. Here are some tips on bathing or showering with a stoma.
Read more16/12/2024
Everyday life
Peristomal Skin Care
Knowing how to identify irritated skin around your stoma early and keeping it healthy could help avoid greater complications and make for a stress-free experience with your stoma.
Read more