From Pain to Purpose: How a Professional Pickleball Player Reclaimed His Life After Colostomy Surgery

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Rob Nunnery is returning to professional sports—and raising awareness about living fully with an ostomy.

When Rob Nunnery stepped onto the pickleball court for the first time post-surgery, it wasn’t just about hitting balls. It was about proving—to himself and others—that life after a colostomy isn’t just livable. It can be powerful.

The professional pickleball player and podcast host spent the better part of two years in unrelenting pain, battling what turned out to be severe perianal Crohn’s disease. It began in March 2022 with a painful abscess—but quickly spiraled into a complex web of fistulas, surgeries, and daily limitations.

“I tried to manage it for as long as I could,” Rob says. “But the pain never really left. I couldn’t sit. I couldn’t train. I was just trying to survive.”

Through it all, Rob kept competing—and remarkably, he reached the #1 ranking in men’s doubles at points during both 2023 and 2024. But by early 2025, after five colorectal surgeries and years of pushing through chronic pain, Rob made a life-changing decision: he underwent a colostomy.

A New Chapter Begins

Rob had the surgery on February 20, 2025—a choice he once feared, but now credits with giving him his life back.

“I was scared. I had all the same questions and doubts,” he says. “But I reached a point where I had nothing left to prove to anyone—and everything to gain if I could just get out of pain.”

Just seven weeks post-op, Rob was preparing to return to competition. His first tournament back was the Dubai Open this May and despite it being a lot to manage physically he won in pro men’s doubles and got silver in pro mixed doubles! “I‘m proud that I went and even more proud of the result being my first tournament back,” Rob says.

Up next, you can follow his return to the Association of Pickleball Players’ APP Tour with the New York City Open May 20-25.

Rebuilding from scratch, this New York stop is where he won both men’s and mixed doubles two years earlier.

Breaking the Silence

For Rob, this comeback is about more than rankings. It’s about visibility and impact.

“I want to show that thriving with an ostomy is not just possible—it’s powerful.”

“There’s so much stigma around ostomies, especially in men and athletes,” he says. “I want to show people that you can still perform at the highest level. You can still live fully. You can still compete.”

He’s deeply aware that not everyone sees examples of active adults—let alone professional athletes—thriving with an ostomy. That’s why he’s choosing to speak out, and to live publicly in a way that helps others feel less alone.

Support and Strength

Rob credits his significant other, Malan Doty, as his rock throughout this entire journey.

“She’s been through it all with me. Every surgery, every setback, every painful day—she never left,” he says. “There’s no way I’d be here without her support.”

Now, Rob wants to be that kind of support for others—especially young people, men, and athletes facing ostomy surgery.

Rob was told of UOAA by his stoma nurse at the Mayo Clinic. “The (ostomy.org) website has been my go-to in terms of education and learning how to navigate having an ostomy from supplies to nutrition to exercise. The travel info was super helpful on my recent trip to compete too.”

Rob is thankful for the work UOAA does to support the ostomy community. “It has made a huge difference in my own journey.”

Rob Nunnery and Pro Mixed Doubles Partner Vivian Glozman | Photo by: Lucas Boland

More Than a Comeback

As Rob steps back onto the court, he’s not just chasing points. He’s showing that strength can look different than it used to—and that adapting is its own form of power.

“I want to show that thriving with an ostomy is not just possible—it’s powerful.”

Tips he’d give to other ostomates on being active? “Ease into it. Listen to your body, don’t try to do too much too soon. Going on walks was so grounding for me. I’m lucky to live close to a beach, so feet in the sand and having less pain during walks have been amazing. And good for me mentally too.” Rob shares.

“My colostomy gave me my life back. If I can help just one person stop feeling ashamed or afraid because of their bag, then all of this will have meant something more.”

You can follow Rob on (Instagram @robnunnery) and sign-up for his daily newsletter link at (read.robnunnery.com)

You can also see Rob at UOAA’s 2025 National Conference where he will be a co-speaker for a session entitled Health, Fitness and Active Living on Saturday, August 16 in Orlando, Florida.

This Pop-up Ostomy Clinic is A National Destination

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By Ed Pfueller, UOAA Communications and Outreach Manager

There is a stoma clinic so good that some people anticipate it every two years and travel from halfway across the country to go to it.

This free stoma clinic is staffed by volunteer Wound, Ostomy and Continence (WOC) nurses and medical professionals and is always included as part of UOAA’s National Conference. This summer the conference is back and a few ordinary rooms of the Hyatt Regency Grand Cypress Resort in Orlando, Florida will be transformed into a bustling stoma clinic from August 14 through 16. This free stoma clinic is stocked with a wide variety of supplies donated from manufacturers and other ostomy-related companies, large and small, for people to sample.

“The WOC nurses are helpful, informative, and full of suggestions and encouragement.”

UOAA Board Member Laura Kaiser, APRN, A-CNS-BC, WOCN is organizing the clinic and volunteer nurses this year. “My colleagues in ostomy care are very generous and giving individuals and are always willing to offer guidance and advice within their specialty. Many ostomy nurses have been lifelines to people through crises. A clinic often allows a nurse a different perspective on life! Ostomy nurses from past conferences say this is the best and most fulfilling conference that they have attended.” She says.

The conference attendees feel gratitude for the nurses. Gail Jasne attended the conference and stoma clinic in 2019 and said, “The WOC nurses are helpful, informative, and full of suggestions and encouragement.”

Mary Hardee attended the conference for the first time in 2023. “My first session was the free stoma clinic. The WOC nurse was very knowledgeable, reassuring and helpful. She let me try a different appliance that met my needs better and she gave me samples to try at home. She also noted that I have a hernia and educated me on that.” Hardee says.

Kaiser says stoma clinic patients should expect to be asked helpful questions to get the root of problems such as:

  • Is your skin red and irritated, does the pouching system leak?
  • Please describe what happens when the pouch leaks and where does it leak?
  • What time do you eat your dinner?
  • Show me how you clean your skin.
  • Does your stoma or the skin around your stoma bleed?
  • Patients often cut the wafer too large or too small and crust incorrectly, I always ask if I may measure their stoma.
  • What pouching system lasted longest and was the most comfortable / what is the longest wear time?

UOAA believes that the best ostomy clinic is the one you can visit the soonest to solve an ostomy problem before it gets worse. That’s why we created the Ostomy Outpatient Services Locator to search for the one closest to you and champion the UOAA Virtual Ostomy Clinic with The Wound Company for a self-pay solution you can access wherever you are.

Jill Jeffries shared her experience and perspective meeting other ostomates gave her. “The nurse explained how I could better wear my pouch system to protect my stoma and surrounding skin from possible irritation. Many people I met had much more serious issues than mine, and I left with a few new friends and great gratitude that my situation is so manageable. I also took away several samples of products new to me that I believe will be very helpful,” Jeffries said. “Thank you for such a great opportunity! I hope to see everyone at the next UOAA National Conference.” she added.

“She let me try a different appliance that met my needs better and she gave me samples to try at home.”

As for the ostomy supply samples that will be available this summer Ostomy Nurse Kaiser says, “If all of the manufacturers come through then the inventory should be extensive and will offer patients and nurses alike a great opportunity to see what is available to the consumer.”

There are typically 18 to 30 volunteers helping in the stoma clinic so Kaiser says if they have enough nurses this year, one WOC Nurse will see patients and make recommendations and be paired with another medical professional (who may or may not be an ostomy nurse) who would act as a runner, assistant and overall helper. 

“The stoma clinic along with our huge ostomy product exhibit hall is something that really makes UOAA National Conferences so unique,” says UOAA President Cheryl Ory. “There are people who very infrequently see an ostomy nurse but when they arrive at our conference always check in at our stoma clinic to see what small improvements they may be able to make in their ostomy health.”

This year the free stoma clinic will be open 8:00 am to 5:00 pm Thursday, August 14 and Friday August 15 and 8:00 am to Noon on Saturday, August 16. 

“Conference registrants can sign-up through our new conference mobile app by selecting the time slot that works for them and add it to their calendar of sessions and events, or in-person at the information desk when they arrive to check in,” says UOAA Executive Director Christine Ryan.

Thank you to the the companies that donate supplies and the nurse volunteers who provide this service to our community at each UOAA National Conference!

Help Others Help You! Ostomy and Continent Diversion Personal Health Preparedness

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Why a Medical Alert ID Matters

By Ellyn Mantell with Jeanine Gleba UOAA Advocacy Manager

It’s a fact; ostomies and continent diversions save lives. Most people are very private about having a fecal or urinary diversion and only share information with people to whom they are most close. Living with a diversion is often considered an “invisible disability”. The concern is, what would happen with these individuals if they were in an accident, unconscious or unable to speak for themselves? They would be unable to notify an emergency responder of the unique needs of the diversion. For example, a Kock pouch is an internal pouch/reservoir that has a stoma that needs to be catheterized throughout the day to empty it. If an emergency responder were not aware of this need, it could result in over filling of the reservoir and damage to the reservoir. 

There is a simple non-verbal way of communicating health issues and medical conditions in emergencies that deserves attention and should be considered. According to the Centers for Disease and Control Prevention (CDC), for personal health preparedness “help others help you” by wearing a medical alert ID bracelet or necklace engraved with important information for emergency responders and healthcare providers. By wearing a form of medical identification people living with an ostomy or continent diversion can effectively advocate for their health and safety protection when they are unable to speak up for themselves. It provides peace of mind should the worst-case scenario happen.  

A real life example shared with UOAA may explain the efficacy of saving time in an emergency situation. An ileostomate was crossing the street and hit by a car. He was not terribly injured, but the force of hitting the ground caused his pouch to explode, causing the first responders to assume his abdomen had been perforated. They spent valuable time cutting clothing to find the cause of the seepage, an unnecessary waste of what could have been life-saving time. Had this gentleman been wearing a medical alert bracelet or dog tag necklace, he would have been assessed differently, and certainly more quickly. 

Wearing a medical alert ID is far more effective than carrying a card in one’s wallet or handbag, or counting on another person to provide vital information. If there is an accident or incident, one may be thrown from a car, their wallet lost or removed, or one may be separated from a person who can advocate. Additionally, a family member or friend may also be incapacitated in some way, or in shock, unable to provide this lifesaving information.

It is suggested by paramedics that a medical alert bracelet be worn on the left wrist, since that is where they reach first for a pulse. A medical icon in red is an attention-grabber, but whatever form of ID you choose be sure it includes the universal medical alert symbol.  Include as much information as possible and be specific. If there are medical instructions, spell them out. A sample inscription might say: Continent Urostomy Catheterize every 4-6 hours with a 1 4Fr. Catheter.

If there are other medical conditions, state them for emergency responders. Include such information as diabetes, allergies. This is no time to be vague. Include a cell phone number of a family member if there is room, and DO NOT FORGET TO ADD YOUR NAME TO THE FIRST LINE!

The most notable and recognized medical alert IDs are from the companies Medic Alert Foundation and American Medical ID. These companies can also keep on record more specific details of your medical history and current care with QR codes and ID cards in addition to the wearable ID.

For those who simply don’t like the look and style of the standard medical alert bracelet there are many more fashionable forms of ID. Other medical alert jewelry may be found on websites such as Lauren’s Hope, and Meridian Medical/Ostomy Supply Company sells a specific bracelet for ostomies. Although first responders tend to look for medical alert bracelets, for those who don’t want to wear jewelry, there are other types of IDs available including: Apple Watch slides, dog tags, and cell phone tags. Your ostomy nurse, primary care physician’s office and most pharmacies can also provide guidance.  

Some people may be uncomfortable wearing something that tells others they have an ostomy or continent diversion. Don’t let stigma stop you from being emergency-prepared!  Consider if you would wear medical alert identification if you had life-threatening allergies. When it comes to one’s health, it should never be associated with shame. 

Ostomies and medical alert IDs go hand in hand saving lives.

 

Disclaimer: UOAA does not endorse particular products, manufacturers, or suppliers.

4 things everyone should know about ostomy bags

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You’ve heard the myths about ostomy bags. They’re smelly. Leaky. A dreaded last resort no one would ever choose.

These myths—old, untrue, and stubborn—keep stigma alive. They tell a story that says ostomy bags are something to hide. Something to be ashamed of. Something to avoid or pity. Fueling careless jokes and bleak portrayals, the myths strip away the complexity of ostomy life and reduce it to a sad, lonely struggle.

But ostomy bags are not tragedies. They are not cheap punchlines or secrets to carry in shame. For 725,000 to 1 million people in the United States alone, ostomies are lifelines—tools of survival and symbols of strength. Ostomies make it possible for people to keep living when illness, injury, or pain have tried to take that away.

It’s time to change the conversation. Here are four things everyone should know about ostomy bags and the people wearing them.

1) Myth: An ostomy is a worst-case scenario.
Truth: An ostomy may save and improve lives in ways people don’t often expect.

Ostomy surgery is often framed as a tragedy. Some say they’d rather die than have one. Others insist they could never live like that. Others still tilt their heads with misplaced sympathy: I’m so sorry you have to wear that. Is it temporary?

Underneath these comments is the unspoken belief that an ostomy is a fate so grim, it should be avoided at all costs.

But here’s what people don’t see: An ostomy can give life back. For so many, it means meals without pain or fear. Days without the clench of needing a bathroom now. The relief of a body no longer ruled by urgency, accidents, and the constant worry that public outings will end in embarrassment.

For those with Crohn’s disease or ulcerative colitis, an ostomy may be what breaks the relentless cycle of flares, medications, and hospital stays. For those with colorectal or bladder cancer, it can be a turning point in removing disease and reclaiming the body. For these and so many other people—those with diverticulitis, traumatic injuries, congenital conditions—an ostomy can be a doorway to fully living.

This isn’t about pretending that life with an ostomy is perfect. It’s about telling the whole truth. Yes, an ostomy can change things. Yes, there may be moments of frustration, doubt, or grief. But for so many ostomates, there is also freedom, relief, and possibility.

And that is anything but the worst.

2) Myth: Ostomies are only for older people.
Truth: Ostomies are for anyone who needs them, from babies to the elderly.

When people hear the word ostomy, they may picture this: an older person in a hospital gown, frail and confined to a bed. But ostomies aren’t just for old age, and they certainly aren’t just for hospitals.

They are for living—for anyone whose body needs a different way forward.

Ostomies are for:

  • The baby born with a condition requiring immediate intervention
  • The toddler whose parents mastered ostomy bag changes before potty training
  • The child with a backpack of homework, snacks, and ostomy supplies
  • The teenager balancing WOC appointments with school, friendships, and first dates
  • The new parent learning to care for a baby while relearning to care for themselves
  • The professional navigating a medical curveball at the height of their career
  • The grandparent chasing after grandkids, refusing to slow down
  • And yes, older individuals who have lived through it all

Ostomies belong to every age and every stage of life. When we widen the lens, we find them at playgrounds and in boardrooms, at first dates and family vacations, in classrooms and grocery store aisles.

We create space for anyone with an ostomy who wonders if there’s someone out there like them. We show them the truth: no matter their age, no matter where they are in life, they are not alone.

3) Myth: No one will love you with an ostomy.
Truth: Love is so much bigger than a bag.

Many ostomates fear they’ll never find someone who sees beyond their ostomy bag. The questions linger between swipes, dates, and hesitant disclosures. When do I bring it up? How will they react? They wonder if the moment they say ostomy bag, there will be an awkward pause and silent calculation that it’s just too much.

Some wish they had fallen in love before surgery—so they wouldn’t have to explain. So the love would already be there, solid and secure. So they wouldn’t have to brace for the moment someone sees the bag and decides whether they can “handle it.”

Even those in relationships may wrestle with doubt. Will my partner still want me? Still find me attractive? Can I trust when they say that this doesn’t change anything?

An ostomy adds another layer to intimacy and relationships. Some potential partners do flinch. Some hesitate. Some don’t know what to say, or they say the wrong thing, or they give a look that stings. (This is stigma in action.)

But love—the kind worth having—is not that fragile. It is not scared of an ostomy bag. And there’s more of that love out there than people think.

People find love at every stage of their ostomy journey. Some before surgery, with partners who sit beside them in hospital rooms, proving that for better or worse isn’t just a phrase. Others after, when they are finally well enough to show up fully in their lives—embracing a love that doesn’t come despite the ostomy, but because of the space it created for healing and wholeness.

Bag or no bag, love is about connection—truly seeing and being seen. And the partners of ostomates prove every day that it’s actually not about looking past the bag at all. They see the bag. They honor it. Not as an obstacle, but as a mark of their partner’s resilience, vulnerability, courage, and strength.

And those are qualities worth loving.

4) Myth: You can tell if someone has an ostomy bag.
Truth: With the right products and care, ostomies often go unnoticed.

People with ostomies are everywhere: at work, at the gym, on dates, in line at the coffee shop. Chances are, most people have met someone with an ostomy without ever realizing it. They’ve stood next to them, shook their hands, shared a laugh—and never knew.

That’s because ostomy bags are not what people think. They’re not open or exposed. They’re not constantly leaking odor or waste in public. In fact, many ostomy bags don’t even resemble the crinkly, medical-looking pouches of the past. Today, there are options designed for discretion and comfort. Sight, sound, scent? All covered. Most of the time, an ostomy is invisible unless the person wearing it chooses to share.

For those who do experience leakage or complications with their ostomy, or just prefer an extra layer of discretion, there are options. A change in products or routine, a wardrobe shift—adjustments that restore comfort and control because people with ostomies aren’t meant to live in constant worry. If someone wants discretion, it can be theirs.

The truth about ostomy myths

Ostomy myths don’t just mislead; they shape lives. They seep into conversations, assumptions, and even the way people see themselves. They chip away at confidence, making it harder for those with ostomies to fully show up in their lives. They feed fear in those facing surgery, delaying care and prolonging suffering. And for everyone else, they can reinforce the dangerous idea that some bodies are more worthy than others.

An ostomy bag doesn’t shrink a person’s worth. It doesn’t make them any less strong, less capable, or less deserving of love and respect.

Because a person with an ostomy is not their bag. No matter who they are—no matter when, how, or why they got their ostomy—they are so much more.

 

Coloplast develops products and services that make life easier for people with intimate healthcare needs. Working closely with the people who use our products, we create solutions that are sensitive to their special needs. Our business includes ostomy care, continence care, advanced wound care, interventional urology, and voice & respiratory care.

Follow Coloplast on Instagram, Facebook, and YouTube, or visit us online at https://www.coloplast.us/

Author’s note: This blog primarily uses the term “ostomy bag” to reflect how the author describes her own pouching system—a functional, everyday part of her life. While the intent is to reclaim the word “bag” from its negative associations, we recognize that others advocate for alternative terms like “ostomy pouch.” Whenever possible, please ask those with ostomies about the language they prefer. 

Editor’s note: This blog is from a UOAA digital sponsor, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

 

Don’t Miss UOAA’s 2025 Conference ~ A Whole New World

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By Cheryl Ory, UOAA President and Conference Chair

Attending UOAA’s 9th National Conference can be transforming for so many new ostomates. Knowing they are not alone can make a positive impact in their new world of living with an ostomy or continent diversion. It’s also a great way for previous attendees to reconnect to those they’ve met and found friendship with over the years while continuing to gain knowledge.

You’re invited to join us on August 14-16, 2025, for UOAA’s 9th National Conference at the lovely Hyatt Regency Grand Cypress Resort in Orlando, Florida.

We know how important it is for the ostomy community to come together, share life experiences, learn valuable information from experts in the field, and talk to vendors about their products and services. Our attendees can also consult with a WOC Nurse, maybe for the first time in years. And let’s not forget the social events that are a must at every conference. Making time for you to network, laugh and enjoy each other’s company is also one of our goals, which this year includes celebrating UOAA’s 20th Anniversary of supporting the community!

A Program with Something for Everyone

Our 2025 conference educational program schedule will not only focus on the physical aspects of having an ostomy or continent diversion, but the emotional and mental health challenges that many may experience as well. We’ve lined up a number of inspirational speakers who will cover the psychological needs of an ostomate both pre and post-op; envisioning life with an ostomy; overcoming PTSD, and how new ostomates can find their way forward with an ostomy. Diet and nutrition, health, fitness and active living, sexuality and intimacy, body image and wardrobe tips will also be discussed by fellow ostomates and experts in the field. And these are just a few of the sessions that you can choose from throughout the conference!

On Thursday afternoon and Friday morning our Exhibit Hall will be open, a must for the entire ostomy community!

Kimberly Holiday Coleman ,left, will be back with a session on Body Image that will have everyone feeling good!

Our keynote speaker is a secret right now, but you won’t be disappointed when they appear on stage at our opening ceremony on Thursday morning. So make sure to join us as we come together to welcome the ostomy community to this unique event.

First-time attendees will be welcomed with an orientation session and surgery-specific basic sessions offered on Thursday. You’ll not only learn about your type of ostomy, but you’ll also have the opportunity to meet and chat with ‘ostomy buddies’, fellow ostomates who have attended before. They’ll be happy to show you the ropes to ensure you have the best conference experience. 

There will also be three special sessions designed for our Affiliated Support Group (ASG) Leaders as well as an educational track and open discussions addressing the needs of the younger population of ostomates in attendance. We are also offering 4 sessions for medical professionals, which will also be eligible for CE credits. And let’s not forget caregivers; where would our community be without them? On Friday morning they will have the opportunity to attend sessions with fellow caregivers, as well as a mental health professional who will discuss coping with the stress of being a caregiver.

You’ll not only learn about your type of ostomy, but you’ll also have the opportunity to meet and chat with ‘ostomy buddies’, fellow ostomates who have attended before.

On Thursday afternoon and Friday morning our Exhibit Hall will be open, a must for the entire ostomy community! We anticipate over 40 vendors will be there to visit with you and share any new products they are offering, services they provide, clothing and accessories available in today’s market, and much more. We’ll be serving a complimentary boxed lunch on Friday before the Exhibit Hall closes at 1pm for you to enjoy.

You can also schedule a 1-hour consultation with a WOC Nurse at our Free Stoma Clinic through our Mobile App. Appointments are available all day Thursday and Friday and Saturday morning (Clinic will close at Noon).

Speaking of our Mobile App, you’ll receive an email to download the App, sign into our unique event, and set up your profile about 2 weeks before the Conference. You can view the schedule and bios of our speakers, check out the exhibitors and where they are located in the Exhibit Hall, connect with “ostomy buddies” and network with fellow attendees, join a Focus Group with one of our Sponsors and more.

Fun Social Events

This year’s closing night event will have a Mad Hatter theme!

Explore Orlando and enjoy dinner out on Thursday night, and then stop by the President’s Reception to meet our co-founder, Ken Aukett, myself, our new President Elect, Bob Baker, as well as UOAA’s Staff and Board of Directors. Enjoy a yummy dessert and beverage as we celebrate our 20th Anniversary with a special toast that evening.

On Friday, before heading to dinner, you are invited to a special UOAA fundraising event, a “Hole in One Golf Putting Contest”. Enjoy a cold glass of lemonade, visit with new and old friends, and try your hand at putting! Who knows, you may get lucky and win the prize, all while raising money to help support UOAA’s programs and services. If you’re not up to going out on Friday night, we are also planning an indoor activity to be announced soon. 

As we wrap up the Conference, Saturday night will not disappoint with our “Mad Hatter Ball”. You’ll enjoy a few scrumptious treats and there will be a cash bar for cold drinks, as well as coffee and tea served. Think about wearing a themed costume or fun hat to the event, and dance the night away to the DJ we have lined up! What a great way to say goodbye to those you’ve just met, and to someone who may now be a forever friend. 

Make it a Vacation with Family or Friends

What a great opportunity to meet fellow ostomates in-person that you’ve only met online while you attend UOAA’s 9th National Conference. Stay a few days earlier or after the conference and enjoy what the Resort has to offer with family and/or friends.

The Hyatt Regency Grand Cypress Resort is a family-friendly resort on a lake with water sports and features a fabulous lagoon style pool with a water slide, (I can picture myself lounging in one of those cabanas after all our hard work to put on this conference is done) A shuttle bus is available to area theme parks and it is within a 5-minute drive of Disney Springs™ and shopping. There are also 3 on-site restaurants as well as a grab and go market.

Golfers can enjoy proximity to two, 18-hole Jack Nicklaus-designed golf courses.

UOAA has made arrangements with the Hyatt Regency Grand Cypress Resort to provide the same Guest Room Rate, $149 per night plus taxes, for single through quadruple occupancy, starting on Tuesday, August 12th, through Monday, August 18th. Make a reservation at the special UOAA Link or call and Provide code “MB18” and the Resort Fee is waived for our group, a $49 per room per day savings!

Stay a few days earlier or after the conference and enjoy what the Resort has to offer…

Register Today!

Register by May 31st to attend at the ‘Early Bird’ rate, a $30 savings! You can also make your reservations at the Resort all in one place – www.ostomy.org/conference2025/. We will continue to update this webpage, including our Program Schedule, as it continues to come together. Please note some of the information shared in this article is subject to change, so please visit the webpage often leading up to the Conference.

We hope to see you in August as we explore this Whole New World!

My UOAA Story- Stanley Cooper

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20 years ago, UOAA formed and continued a legacy of advocacy and support for the ostomy community.

I had my Ostomy Surgery in 1992 due to ulcerative colitis. At that time the national organization for our community was the United Ostomy Associations (UOA). Around that time UOA was working on a project to increase the allowable amount of ostomy supplies a person can order. They wanted to double the amount that a person could order, because if a patient had skin problems or leakage problems a person would need more supplies than normal.  As it stood the allowable wasn’t enough and if a person needed more they had to be paid for out of pocket and UOA members were calling to see if something could be done. That was the start of the Advocacy program at UOA.

When UOA folded in 2005 former members put together the new organization, United Ostomy Associations of America (UOAA) it was determined that the new organization would have an Advocacy Program from the start. That was a confirmation to us all, as to how important an advocacy program is to UOAA and its members. Today, that legacy continues with an active advocacy network and national advocacy goals everyone should be involved with.

When I had my surgery, I was a married man with four daughters and worried about the future and whether I would be able to provide for them. My ET Nurse (Entrostomal Therapist), today’s WOC Nurse, gave my wife information on the local support group. My wife and I attended a meeting and after talking to a few attendees, I began to feel a lot better about myself.  I was so appreciative of the Information that I had received that I decided I needed to do more and at the next meeting, they had sample letters that they were asking people to type up and send to their senators. One member brought the letter back after a UOA National Conference and made copies of it. My brother had given me his old computer and printer so I retyped the letter up and printed out 50 copies, printed out envelopes and donated the stamps to send them for the group. All someone would have to do is sign the letter, put it in the envelope and mail it.  After that, the board of directors of the support group asked me and my wife to join their board. We gladly accepted.

We went to two of our first national conferences in 1995, what an eye-opener for both of us. there were so many sessions that both of us wanted to attend but couldn’t make it to all of them because some were at the same time, so my wife said,” how about we split up and report back to each other at the end of the day.” It was fantastic. A few years later UOA decided it was going to dissolve. We were devastated.

During the holiday season Stanley Cooper enjoys playing Santa Claus in the Philadelphia area.

We thought we were going to our last conference in Anaheim, California when it was announced that a new organization was forming. That was a huge relief to me and my family to know that there would be a national organization with the same values as the former organization to fulfill the emotional needs and be able to help any future family members or friends that someday may find out that they need to have an ostomy.

UOAA has continued the tradition and I was honored to volunteer when it came to Philadelphia in 2019. This year UOAA is hosting its 9th National Conference August 14-16, 2025 in Orlando, Florida.

Today UOAA also has an outstanding website here with ostomy.org that patients and medical professionals can go to and print out information on ostomy management and more. This is a huge help to new ostomy patients and ostomates who have had their ostomies for a while and are having problems can solve it on their own or postpone their need until they can get to see a doctor or WOC Nurse.

UOAA also has a Network of Affiliated Support Groups around the country where patients can go to a meeting and talk to other ostomates about having an ostomy, get answers to their questions such as will I be able to return to work? What type of clothing will I be able to wear? Will I be able to have relations with my husband, wife, boyfriend, girlfriend or significant other? Just some of the questions that have come out and there are hundreds more. Local Support Groups are vital to all ostomy patients and can be found on UOAA’s website with their support group finder.

Ostomies are lifesavers and I’ve been active in my retirement as a bakery worker and have gotten to serve as a Santa Claus in my community around Philadelphia.

We continue to support Ostomy Awareness Day each year and also any advocacy actions we can take on a state or local level. We’re all lucky UOAA is here for our community. Happy 20th Anniversary!

If you’d like to share a story about how UOAA has helped you or others in the past 20 years with ostomy advocacy, support, educational resources, events or more- email us at info@ostomy.org

BELIEVE in the Unseen Magic of All the Holidays and UOAA Advocacy

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“To believe in the things you can see and touch is no belief at all. But to believe in the unseen is a triumph and a blessing.” – Abraham Lincoln

By Jeanine Gleba, UOAA Advocacy Manager

UOAA’s Advocacy Committee and grassroots advocates were busy in 2024. We do all sorts of advocacy work throughout the year for the ostomy and continent diversion communities. A lot of our advocacy work is unseen, but you should know it is there.

For example behind the scenes we supported several efforts with other coalitions and like-minded patient organizations by signing onto ten different letters that were sent to Congress many with positive results and we had several open action alerts on our advocacy platform supporting Federal legislation. We also continue to advocate with the Access and Care Coalition in our efforts with the Medical Directors from the Centers of Medicare and Medicaid Services (CMS) to make improvements to the ostomy policies and processes in particular for those beneficiaries who medically need greater quantities of products than what is allowable under the current policy.  We won’t stop until this is resolved.  Another example has been challenges with billing codes that were approved by CMS a couple of years ago for irrigation sleeves, but Medicare beneficiaries have been unable to get the quantities they need. Using the misleading CMS quantity chart, suppliers are interpreting the quantity of “1” as 1, each.  However, the 1 actually represents a 1 month supply.  For reusable sleeves this equates to 4 sleeves per month and for disposable sleeves it is the quantity that the beneficiary needs. UOAA worked with the CMS billing contractor Noridian to help clarify this to ensure irrigators obtain the supplies they need.  Together we wrote this announcement that was sent to the supplier community for many weeks in 2024 and it was included in Noridian’s weekly Monday educational series.  

Speaking of holiday wishes, have you ever wished there was an outpatient ostomy clinic near you but didn’t know where to look? In 2024 UOAA’s Advocacy Committee unveiled a new “Outpatient Ostomy Services Locator” with close to 700 listings. 

“This directory, a resource that will enhance an ostomate’s recovery and get them back to their life, is just what the doctor ordered,” -Guy Orangio, MD, FACS, FASCRS

If you still can’t find a place for ostomy care and want to do something good for the ostomy community in your area, consider working with a local Affiliated Support Group leader or local hospital and/or ostomy nurse to open one – learn how to with UOAA’s new course Roadmap to Establishing Outpatient Ostomy Services which was released in 2024…and better still we have partnered with AppleTree CEU and now offer free Continuing Education credit.

Internally we revamped the advocacy priority webpage on ostomy.org to make it easier for you to know what our primary issues are and where we stand. View it here.

Did you see our new advocacy resources created in 2024? One of the newer advocacy campaigns is advocating to stop the practice of non-medical switching of ostomy supplies. You can learn more and see the resources we created on this new webpage. This year for Ostomy Awareness Day we created a new toolkit on how to obtain a Governor proclamation. As a result, thanks to our grassroots advocates half of the United States obtained proclamations!

On top of that we continue to make strides in the efforts to improve coverage and access to ostomy supplies in state Medicaid plans. Throughout 2024 we shared when Idaho, Maryland and New York made such improvements. 

We’ve also seen our advocacy work influence others and in 2024 our Ostomy and Continent Diversion Patient Bill of Rights were the model for the Intermittent Catheterisation Clinical Practice Principles. They were also used in soon-to-be-published research to improve patient outcomes and a colorectal surgeon fellow is now ensuring these best practices are being provided to ostomy patients in a North Carolina VA hospital. Slowly but surely, we are making a difference!

Lastly, our advocacy team contributed 10 blogs to ostomy.org to educate ostomates, keep people informed and inspire others.

And for those looking for a peek into the future:

As part of UOAA’s ongoing efforts to advocate for more ostomy nurses and increase ostomy education with medical professionals, in early 2024 we proposed a collaborative effort between UOAA and the Wound Ostomy Continence Nurses Society®. Together we designed a fun and exciting campaign entitled “Back to Your Nursing Roots” to encourage nurses with an ostomy certification to return to their nursing roots and plant ostomy seeds with new nursing students! We are currently in the pilot test phase with 12 certified ostomy nurses. The campaign will “bloom” in March 2025! 

Believe in us. Most importantly, when you believe in yourself magic can happen.

Christmas with an ostomy, all wrapped up

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By Convatec

We want to help everyone in our ostomy community have a wonderful holiday.

So, we’ve put together this guide to share our top tips. In our 12 ways of Christmas, you’ll find advice about everything from stocking up on supplies to eating and drinking in moderation. If you have a child with an ostomy, you’ll find tips on how to prepare for Christmas day. You’ll also find our Accessories Wish List, featuring our most popular accessories.

12 Ways of Christmas

The countdown to the big day has begun. To help you prepare, we’ve put together our 12 ways of Christmas. Share your tips on our social media channels using the hashtag #OstomyHoliday

1. Stocking up

Now’s the time to order more ostomy products if you haven’t already done so.

2. Get wrapping and packing

If you plan to travel, make a checklist of everything you need to pack or better still, pack an overnight bag now.

3. Eat, drink and be moderate

Avoid the risk of bloating or even a blockage by enjoying your favorite foods in moderation.

4. It’s all about the bubbles

Remember champagne, sodas and other carbonated beverages can cause ballooning and indigestion.

Check out our top ostomy nutrition tips here

5. Add Accessories to your wish list

The holiday break is a great time to give ostomy accessories a try. If you’ve got an ileostomy, give Diamonds™ Gelling Sachets a try – just pop one in your pouch to thicken your output and reduce gas.

6. Beware of what’s hidden in the dessert

If you’re one of the few who enjoy fruitcake, be aware of the ingredients and which might cause irritation.

7. Marshmallows aren’t just for S’mores

Many people with an ileostomy find that marshmallows are a great way to quickly thicken output.

8. Enjoy it

Sometimes the holidays can be stressful, even without an ostomy! Being knowledgeable and prepared can ensure you have a great time.

9. Dreaming of holiday food?

From a vegetable overload to rich, spicy foods, the holiday menu is packed full of potentially gas-inducing foods. Many people find they can enjoy these foods in moderation. And remember, if you’re at someone else’s house, it’s not rude to refuse.

10. Don’t expect the Santa Express…

If you’re traveling by land, air or sea, there’s likely to be a limited service. So, it’s a good idea to keep a supply of pouches and supplies within easy reach, just in case.

Check out our top travel tips for ostomates here

11. Stay hydrated

It’s tempting to hope that all that soda and eggnog is keeping you hydrated, but in reality, the opposite is more likely to be true. Alcohol is a diuretic, so if you decide to indulge a little, make sure to also drink plenty of water.

12. Take it easy the day after

Whatever day you celebrate on, it can be hugely fun, but also tiring. So be sure to plan to rest the day after.

Let’s make it all about stockings, not pouches: holiday tips for children with an ostomy

We all want our kids to wake up on Christmas morning (not too early!) thinking about their stockings, not their ostomy pouches. Best of all, there are things we can do as parents to help.

Plan ahead

You’ve already got so many things to think about, so it’s a good idea to make a checklist. Have you got enough supplies? If you’re going away, have you packed a bag?

Eat ahead

It can be a good idea to give your child bland food a day or so before a big holiday feast, to compensate for any overload the day of.

Sleep easy on Christmas Eve

You’re likely to already have an established bedtime routine. If so, try making it a bit earlier so you and your child are not rushed. Remember, to minimize the risk of leakages, avoid eating too close to bedtime and make sure the pouch is completely empty.

Wrap the mattress in a plastic sheet

If you’re not already doing so, get wrapping! A plastic sheet is easy to clean, avoiding any unnecessary upset.

Editor’s note: This blog is from one of our digital sponsors, Convatec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Discarding Pouches Discreetly But With Dignity

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Lynn Wolfson, UOAA Director

As ostomates, we often feel self-conscious in public but deserve the same respect as anyone else. We don’t want to be singled out or face discrimination because of our ostomies. However, we also have a responsibility to leave a positive impression on others and the places we visit.

Recently, while flying, I had an unusual interaction with an airline attendant. Before I entered the restroom, she approached me to ask if I needed anything. Though her inquiry seemed strange, I assured her I was fine. After I left the restroom, she asked if I had disposed of any bodily waste in the trash. I was surprised by the question and said I hadn’t.

As a teacher, I saw this as an opportunity for education. I asked the flight attendant why she had asked such a personal question. She explained that she had noticed my ostomy through my clothing and that her grandmother had also had an ostomy, often discarding used bags in the trash without proper disposal. Her concern clarified her question. While the inquiry was inappropriate, it underscored how improper ostomy hygiene can reinforce negative stereotypes.

I explained that her grandmother likely had a colostomy, while I have an ileostomy with a drainable pouch. I suggested that her grandmother should have used a disposable bag, like a grocery or Ziplock bag, to seal or knot before disposal. This practice helps reduce mess and odor and allows ostomates to discreetly dispose of their pouches. It’s important for all ostomates to follow this practice at home, in others’ homes, and in public spaces. Many manufacturers provide plastic bags with the pouches for this purpose.

It’s crucial for us to carry or request a bag for disposing of our ostomy pouches and to knot these bags before discarding them.

For new ostomates, if you find yourself in a public restroom without disposal bags, wrap your used pouching system in toilet paper and place it in the wastebasket. To minimize odors, consider using one of the many deodorizers available from ostomy supply providers. Some deodorizers are drops that can be added to the bottom of the pouch, while others are air freshener sprays.

To minimize splashing when draining a pouch, try sitting backward on the toilet seat and placing toilet paper in the bowl before draining. It’s worth noting that at past UOAA conferences, hotels have commented on how clean and hygienic UOAA groups are for their cleaning staff compared to the general public.

Following my experience, I’ve advocated with the airline to consider adding a universal sign in the lavatories to provide guidance on the proper disposal of medical supplies. It would be beneficial if airplane restrooms included bags for this purpose, which could also be used for baby diapers, sanitary napkins, and tampons.

In summary, it’s crucial for us to carry or request a bag for disposing of our ostomy pouches and to knot these bags before discarding them.

The Impact of Advocacy: Healing Yourself and Uplifting Others

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By Nicole Richards

“When you stand and share your story in an empowering way, your story will heal you and your story will heal someone else.” – Iyanla Vanzant

I believe this quote accurately describes the importance advocacy is to the ostomy community. Living with an ostomy is a true test to one’s physical and emotional health. Raising awareness is sharing our own personal journey of those physical and emotional experiences with others. It’s only with this vulnerable truth, that we allow other ostomates to normalize their situation. Through advocacy we not only work on our own healing journey, but we inspire and support others on theirs.

This past summer I answered the call to take action from UOAA, and I filed a proclamation request with my state’s Governor for Ostomy Awareness Day. While writing the request I opened myself up to a very vulnerable part of my past that I had stuffed away and never fully processed. More specifically, writing the proclamation request made me realize just how much I minimized my own experience of what life was like pre-ostomy. Another realization I had was that I needed to be more compassionate and forgiving of myself for all that I had been through during that time. This was such an “ah ha” moment for me. I am very grateful for the opportunity I had to advocate and share my story. Had I not have taken the time to revisit the years of my life leading up to ostomy surgery I may not have had the opportunity to heal that part of my past.

The Power of Your Story

It is not only healing for ourselves; it is validating for others who are going through similar struggles. Telling your own personal story helps other ostomates feel less lonely on their ostomy journey; it creates connection and community. Talking about your experiences is not just an act of self-care but an act of service to others.

We experience life differently from one another. My perspective and experience could be completely opposite than that of the next person. With that being said, we tend to resonate with people whose journey is similar. Additionally, many of us not only have an ostomy, but we have an underlying health condition that brought us to the point of needing ostomy surgery. The fact that there are numerous reasons a person might need an ostomy makes us such a diverse group of people. This is why your unique ostomy story matters so much.

These personal stories are more memorable than facts, so they are indispensable in advocacy efforts.

By listening to other people’s perspectives and experiences we create awareness and learn something we didn’t understand. Telling your story is not only important for healing of yourself and others, but ostomies carry many misconceptions. Unfortunately, those misconceptions lead to stigmas and barriers. Through advocacy and sharing our story we aid in the breakdown of those barriers and collectively shed light on the realities of living with an ostomy. Equally important when it comes to advocating on issues for the ostomy community, your voice matters! By telling your story, legislators and policy-makers hear how their constituents are affected. These personal stories are more memorable than facts, so they are indispensable in advocacy efforts.

Based off my interactions with the ostomy community, I can almost guarantee most of us are willing to go out of our way to provide support to one another. Furthermore, I believe most ostomates feel a sense of purpose and fulfillment by helping one another. We are strong and resilient beings who have so many stories and experiences to pass on that could deeply encourage and uplift another in the ostomy community, provide awareness to future ostomates and those struggling with their ostomy.

So, where are you in your healing journey?

I recently read a book called “You Can Heal Your Life” by Dolores Hay. She refers to starting the healing process by “cleaning your emotional closet.” You go in, you pick something up, you examine it, then you either store it away for later or you get rid of it. I love this analogy because it allows you to briefly examine the emotion and decide if now is the time to process and release it, or store it away for later when you feel strong enough to do so.

Are there parts of your ostomy story that have been stuffed away in your emotional closet? Are you ready to look at it so you too can get rid of it? Are you ready to impart some of those experiences that may help others and provide awareness? Maybe through advocacy you can find healing too.

My guess is that if you are an ostomate reading this, you have a story to tell. A personal journey someone else would love to hear, connect with, and find encouragement from. You may keep someone else from feeling alone in their ostomy journey. You just never know who needs to hear from you and your unique lived experience!

Editor’s note: If you are interested in getting more involved with UOAA and advocating for the ostomy community, join their Advocacy Network. Have an ostomy supply or care access issue? Your story matters. Contribute your story for national advocacy. Or you can share your ostomy story on UOAA’s Wall of Love!

Managing the Challenges of Pancaking

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By Janet Stoia Davis RN CWOCN FCN and Janice C. Colwell APRN, CWOCN, FAAN

 

What is pancaking?

For a person with a fecal stoma, emptying an ostomy pouch can at times be slow, messy and frustrating—especially if they find that stool is stuck at the top of the pouch around the stoma. When stool is thick and dry, a phenomenon called pancaking may occur. Thick stool exiting the stoma that does not fall to the bottom of the pouch can form into the shape of a pancake at the top of the pouch, hence the term “pancaking”.

Why can pancaking be a problem?

Thick pasty stool can remain over the stoma, making its way under the pouch adhesive and potentially lifting the adhesive/pouch. When this occurs, the stool contacts the skin around the stoma causing leakage. This leakage can damage the peristomal skin, lift the pouch from the skin, and result in odor and seepage of stool onto clothing.

Who is at risk for pancaking?

Anyone with a fecal stoma can experience pancaking, but it is more common among people with a colostomy. Colostomies are created in the colon or large intestine (they are given two, names which confuses people, but they are one and the same). The colon’s job is to absorb or “suck” water out of the intestinal contents, and as stool travels through the colon it becomes thicker. By the time it reaches the final section of colon on the left side of the body, it can be pasty and dry. Many colostomies are created on the left side of colon, making the stool pasty, dry, and thick. When stool is expelled from the stoma, it may not move away from the stoma, getting stuck at the top of the pouch leading to pancaking.

Individuals with ileostomies can also experience the challenges of pancaking, but it is less common and will depend on the consistency of their stool. In some cases, form-fitting clothes may constrict the pouch and flatten the stool, preventing it from falling to the bottom of the pouch.

What can be done to decrease instances of pancaking?

For some people, increasing fluid intake can make the stool less thick and pasty, which may allow it to travel away from the stoma and drop to the bottom of the pouch. Stool softeners can be taken orally to increase the moisture content of the stool which may also facilitate the movement of the stool into the bottom of the pouch. If an individual’s clothing fits snugly over the pouch, wearing a looser fit may also help decrease the incidence of pancaking.

Some pouching systems have a built-in filter that helps air escape the pouch and deodorizes the gas. However, if the filter removes all air from the pouch, it may create a suctioned environment that makes it difficult for stool to slide to the bottom. A sticker for the gas filter (provided with some pouches for underwater use) or a piece of tape over the filter may help avoid the vacuum effect in the pouch. This will vary by individual.

The use of an in-pouch lubricant can facilitate the movement of stool away from the stoma and into the bottom of the pouch. These lubricants can be applied to the inside of the pouch one or more times per day. This creates a slick surface on the inner lining of the pouch to help thick stool slide to the bottom of the pouch and prevent it from pancaking over the stoma. Lubricants can be used in both drainable and closed end pouches.

In addition to pancaking reduction, a lubricant may also make pouch empties faster and cleaner. Several companies make lubricant that can be used in the pouch. A new company, Revel, has placed special emphasis on pancaking and drain time reduction. Revel created a new type of lubricant using a technology called LiquiGlide that creates a long-lasting slippery surface on the inside of the pouch. Their product, It’s in the Bag, can last up to 24 hours, alleviate pancaking, and decrease pouch drain time. This product has been used by people with a fecal stoma who reported a decrease pancaking and emptying time as well as leaving behind an overall cleaner pouch.

Revel is a proud sponsor of United Ostomy Associations of America and dedicated to creating products that make significant improvements in the lives of ostomates. To learn more, visit https://revelostomy.com/

 

Editor’s note: This blog is from one of our digital sponsors, Revel. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

We Are Living Proof Ostomies Are Lifesavers

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Fall Into Ostomy Awareness

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Ostomy Day or Ostomy 5k- This is the Time to Get Involved

Whether you attend an in person or virtual event, make this be the year you get off the sidelines and discover the power of ostomy awareness. Learn more about all the ways to get involved on our Ostomy Awareness Day (OAD) web page.

“Ostomies Are Lifesavers” – this simple message can pack a big punch when you hear it from someone you know. Whether you post to friends and family on social media or confide in a few people, it can help dismantle stigmas and open hearts and minds. Everyone benefits when you state “I Am Living Proof that Ostomies Are Lifesavers” and reflect on the life you have enjoyed because this surgery exists.

To share your message with UOAA and others consider sharing a video, photo or statement on our online Wall of Love. #IAmLivingProof #OstomiesAreLifesavers

Virtual events to celebrate OAD

Events this week kick-off on Thursday, October 3, with a special Virtual Art Expression Class in collaboration with Connecting Pieces. Have fun, experience some artful healing and connect with others to decorate an ostomy pouch or anything you’d like. Register today! $10 child, $25 Individual, $35 Group

On Saturday, October 5, Ostomy Awareness Day, WOCN® Society is hosting a virtual Ostomy Education Day. Caregivers, medical professionals seeking CRE credits, and anyone in the public wanting to learn more about ostomy care are welcome to join this free event.

On Saturday you’ll also have the chance to connect directly with our inspiring Ostomy Awareness Day Champion Kimberly Holiday Coleman. Visit UOAA’s Instagram Page @UOAA_ at 12 noon Eastern Time (9am Pacific Time)  for a special Instagram Live Q&A – and feel free to ask her anything!

The Ostomy 5k- Not just for Runners

It’s a celebration of resilience and a gathering of ostomy awareness supporters no matter how far you can walk, run or roll. Virtual 5k participants have gone the distance by using a treadmill, swimming, kayaking, riding stationary bicycles, and even horseback riding! Be sure to share your photos no matter where you do it! 

The in-person Run for Resilience events are a mix of timed runs and fun runs as well as scenic walks and all are very family-friendly. Registration is still open and everyone is welcome to participate or simply gather and cheer on the resilience of the ostomy community!

The events are held on scenic greenway and park locations in Durham and Birmingham, city walkways outside Chicago in Downers Grove, riverside trails in Nashville and Northwest Arkansas, to mountain valleys in the Poconos of Pennsylvania and Meridian, Idaho.

The Trumbull County Ohio walk/run is ready for any weather. It will take place on an indoor track at the Niles Wellness Center. They’ll have a free mobile health screening service, a raffle and refreshments.

 

Locations like North Carolina are just as well known for their amazing silent auction items that are not to be missed. Local DJs, like Susie Q in Rogers, Arkansas, add to the festive atmosphere of these events.

All events have snacks and hydration and a variety of local and national sponsors’ tables to visit.

Celebrate with our Run for Resilience Sponsors

Sponsors add to the fun and awareness atmosphere of our Ostomy 5k Events Nationwide.

Coloplast is the Exclusive Diamond Sponsor of this year’s Run for Resilience Ostomy 5k. Representatives will be on hand to answer your questions and show off supplies at the events nationwide with the exception of Alabama. Check your race bags for a special sticker and magnet as well. Coloplast is also hosting an Ostomy 5k event for staff on the campus of their Minneapolis headquarters.

Revel, a new national sponsor this year, is excited to be a part of Ostomy Awareness Day and  proud to be supporting UOAA’s mission to advocate for the ostomy community. Revel will be hosting a “no-pancaking” breakfast with a full waffle bar at the founding race in Durham, NC! They’ll also be serving up samples of It’s in the Bag and free swag at booths in Durham, NC; Niles, OH and Downers Grove, IL.

Hollister is proud to be a returning sponsor this year and will have representatives and fun activities at all the national event locations. As we approach #OstomyAwarenessDay on October 5th, Hollister wants to hear about your plans to celebrate the ostomy community! For ideas on how to get involved, take a look at their activities.

Other Gatherings Nationwide

For more opportunities to meet others and learn about ostomy products check our UOAA Event Calendar for info on Ostomy Fairs and Affiliated Support Group gatherings being held to celebrate the day.

Don’t forget to let us know how you choose to make a difference on this day or in the future. Whether you got a proclamation passed where you live, or want to model that ostomy awareness t-shirt we want to see it! Email us at info@ostomy.org.

Awareness Saves Lives: Celebrating Ostomy Awareness Day

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By UOAA Advocacy Manager Jeanine Gleba and UOAA Communications and Outreach Manager Ed Pfueller

“If you believe in great things, you may be able to make other people believe in them, too.” ~ Oliver Wendell Holmes

UOAA’s greatest national advocacy effort to raise ostomy awareness is Ostomy Awareness Day. It is held annually on the first Saturday of October. By raising awareness that this is a life-saving surgery we are steadily dispelling fear and misconceptions and erasing stigma. 

The most significant aspect of Ostomy Awareness Day is that we empower people living with ostomies. Every time a person raises ostomy awareness, it has the power to save and transform lives. They show the world their resilience and that they are leading fulfilling lives with their ostomy.  

Get inspired to share your story after listening to this year’s Ostomy Awareness Day Champion Kimberly Holiday-Coleman share her story.

A simple way to share your personal story about how having an ostomy has saved or changed your life is with your family and friends on social media and use the hashtags #OstomiesAreLifesavers,  #OstomyDay2024 or #IAmLivingProof and tag UOAA.  You can also share our #OstomiesAreLifesavers “giphy stickers” on social media (search @UOAAOstomy).

Even if you are not on social media you can click here to record a video automatically or leave a text response or photos for our online ‘wall of love’ gallery of “Ostomies Are Lifesavers” stories.

We hope you can attend the festive atmosphere of one of our eight Run for Resilience Ostomy 5k events around the country or share a photo in your Ostomies Are Lifesavers t-shirt you get when registering for the Virtual Ostomy 5k. However you choose to celebrate, let us know!

To raise much needed ostomy awareness in your community please consider writing a Letter to the Editor of a local newspaper or work behind the scenes by sharing our Ostomy Awareness PSA videos with your local TV outlets. 

To kick-off the weekend events UOAA is partnering with the nonprofit Connecting Pieces for a Virtual Art Expression Class on Thursday, October 3, 2024 at 6:30 pm ET. Bring an ostomy pouch for a healing and fun creative exercise with whatever simple art supplies you have at home. All are welcome! 

On Ostomy Awareness Day on Saturday, October 5, you can also “Ask an Ostomate.” Our Ostomy Awareness Day Champion Kimberly will be hosting Q&A on UOAA’s Instagram @uoaa_ Live at Noon (11am CT).

We hope you’ll join UOAA and the ostomy community and make a difference too! Keep checking our Ostomy Awareness Day webpage for all the ways you can raise ostomy awareness on October 5, 2024.

PS. Awareness doesn’t just happen overnight or in one day. Learn more about raising ostomy awareness all year long within our “How to be an Ostomy Champion” toolkit.

A Milestone for Ostomy Awareness

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 10 Years of the Run for Resilience Ostomy 5k

By Ed Pfueller, UOAA Communications and Outreach Manager

When people without ostomies pay to put on a pouch, fill it with applesauce, and then run a 5k- you know you are onto something. It was 2014 in Durham, North Carolina, and what started a few years prior as the ‘Wanna Wear One’ challenge for medical professionals to learn empathy for ostomy patients had now evolved into a community-wide ostomy awareness event.

The idea for an Ostomy 5k started after Lara DuPree, a WOC nurse at the University of North Carolina, discovered that there was not a 5k for the patients she was most passionate about. She reached out to friend Angela Richardson, a WOC Nurse at Duke, to help change that.

“I was like, I don’t know anything about that, but okay!” Richardson recalls. ­­Richardson had seen her grandmother and patients initially wish for death over an ostomy and knew more needed to be done to educate against stigmas.

DuPree reached out to United Ostomy Associations of America (UOAA) and found that though they were not experienced in such events they were willing to help build enthusiasm. The event was a perfect celebration of Ostomy Awareness Day recognized nationwide every October.

The event soon had a location on a scenic greenway in Durham, but still needed funding. The duo reached out to their ostomy manufacturer contacts and also hit the streets asking local businesses, like run shops, many of whom did not know what an ostomy was. “Each person we talked to was another opportunity to raise ostomy awareness,” Richardson recalls. They also got in-kind donation items for a silent auction that raised over $1,000.

Medical units of their respective hospitals also fundraised and challenged each other for the coveted “golden toilet trophy” engraved like The Stanley Cup! “It was a fun way to get people involved, a good conversation piece for anyone walking by the nursing station,” DuPree says.

A kids’ fun run and activities like face decorating, also make it a great family-friendly event. The organizer’s children grew up around the event and are now vocal and dedicated ostomy advocvates.

One ostomate runner that first year has since had a lasting legacy with the race, Sandi McBride.

McBride found “a ray of hope” in her fellow ostomates who completed the 5k alongside her. Sadly, McBride passed away four months later from Crohn’s disease complications. “The Ostomy 5k refueled her spirit and determination and she knew her ileostomy didn’t define her,” her daughter Keyla reported.

In her honor, the McBride Scholarship was created with a portion of the money raised each year. This gift enables a local person in need to attend a UOAA National Conference. “She was such a positive and inspiring person and had a big team of family and friends that came to support her that year and returned for several years after she passed,” DuPree says.

Lara DuPree and her mother Dani Osewalt.

After the success of the first year, the pair were excited to get the word out even more and found lots of enthusiasm at UOAA’s 2015 National Conference in St. Louis. “We wore our t-shirts all around and passed out pins to everyone who was interested,” Richardson recalls.

In the weeks leading up to the 2015 Durham race the importance of supporting the ostomy community became even more personal for DuPree, as her mother, Dani Osewalt, had ileostomy surgery after a return of colon cancer. DuPree balanced caring for her mother with organizing the race. Her mom was discharged on the day of the event, Ostomy Awareness Day. “It has to be symbolic of something,” DuPree thinks.

Osewalt is the 5k’s unofficial cheerleader, and the top fundraiser for the cause every year.  “I am beyond proud of the dedication Lara has for the Ostomy community that I am a part of. She inspires me, educates me and supports me as an ostomate and as her mother!” Osewalt says.

A Legacy Across the U.S.

In 2016, UOAA Executive Director Jay Pacitti worked to increase sponsorships and expand the event nationwide. “We had folks from all over the U.S. ask about starting an event. It was great to see people so passionate and willing to do what it takes to spread awareness through a 5k.” Pacitti remembers.

The event was also renamed the Run for Resilience Ostomy 5k. “We felt that the resilience just spoke towards persons living with an ostomy, rising above challenges and continuing to persevere through whatever it takes,” Richardson says.

2024 marks the 8th anniversary of the Birmingham, Alabama and Boise, Idaho Ostomy 5ks. This year events are also taking place in Arkansas, Ohio, Pennsylvania, Illinois, and Tennessee.

Millie Parker and her extended family participate in person or virtually each year.

Before the pandemic sidelined live events in 2020, UOAA volunteer Millie Parker usually flew to North Carolina with three generations of family members for the 5k. The Worldwide Virtual Ostomy 5k, now also in its 10th year, has allowed her to continue the tradition. “Now wherever we are, all 19 of us wear our Ostomy Awareness Day shirts each year to run, walk, bike, swim or kayak to celebrate my new lease on life,” Parker says.

Nationwide the Run for Resilience Ostomy 5k is the biggest fundraiser in support of UOAA’s programs and services. Since 2014 about 1,300 people have participated in the North Carolina event alone and it has earned almost $109,500. Nationally almost $494,000 has been raised in support of UOAA’s mission.

“The impact organizers Lara, Angela and now Jessica have made to the ostomy community and to UOAA over the past 10 years is absolutely amazing,” says UOAA executive Director Christine Ryan.

“It has been beautiful to see the ostomy awareness and communities that have blossomed around the Run for Resilience Ostomy 5k events all across the country,” says UOAA President Cheryl Ory.

Back in North Carolina, an impending Hurricane canceled the 5k portion of the event in 2022 but the popular silent auction was still a success. In 2023, despite pouring rain, smiles shined on the faces of participants crossing the finish line as a DJ welcomed them each in. Sponsors shared details of their ostomy products at their table displays and the Triangle Ostomy Support Group shared their local support resources.

Run for Resilience Ostomy 5k founders Lara DuPree, left, and Angela Richardson, center, had out a medal for the top female ostomate finisher at the 2023 event in Durham, North Carolina.

On Saturday, October 5, 2024 Lara, Angela and newest co-race director, Jessica Blakeslee, and their dedicated friends and volunteers are looking forward to celebrating 10 years of raising ostomy awareness at the Durham, North Carolina Ostomy 5k.

They look forward to encouraging ostomates to meet and celebrate their resilience. One of their favorite memories is when a supporter from Nebraska flew to North Carolina for the event. “She said, I’ve had my ostomy for 10 years, and I’ve never met somebody else with an ostomy, this is the first time. And she just started crying. She felt seen, it was amazing,” DuPree remembers.

They know ostomy awareness and education still has a long way to go and want their community to know that there is nothing a person with an ostomy can’t do.

Fittingly (despite the serious runners the timed race often attracts) the course record is still held  by an ostomate– Collin Jarvis.

UOAA wishes to thank all the volunteers and local and national sponsors that have made the Run for Resilience Ostomy 5k possible! Visit ostomy.org/5k to support the cause!

 

 

Access to Supplies with Medicare – The Never-Ending Story

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Words of Advice from UOAA’s Advocacy Committee Co-Chair Sue Mueller and Advocacy Manager Jeanine Gleba

UOAA often hears from the ostomy community about their struggles with getting quantities of ostomy supplies that are over the Medicare allowable limits. UOAA recognizes that the process to obtain supplies beyond the maximum amount is difficult to navigate and is not well understood.  

Medicare’s coverage of ostomy supplies is explained in their Local Coverage Determination (LCD) policy (A52487) and the allowable quantity limits are in LCD policy L33828.  According to their policy:

“The quantity of ostomy supplies needed by a beneficiary is determined primarily by the type of ostomy, its location, its construction, and the condition of the skin surface surrounding the stoma. There will be variation according to individual beneficiary need and their needs may vary over time. The actual quantity needed for a particular beneficiary may be more or less than the amount listed depending on the factors that affect the frequency of barrier and pouch change. 

The explanation for use of a greater quantity of supplies than the amounts listed must be clearly documented in the beneficiary’s medical record. If adequate documentation is not provided when requested, the excess quantities will be denied as not reasonable and necessary.”

According to our conversations with the Center for Medicare and Medicaid Services’ (CMS) billing contractors the quantities listed are reasonable and necessary for 80% of the patient population. The key for the small population who require quantities of supplies that exceed the usual maximum amount, is the information documented in the medical record that explains the need for the increased amount.  What are the factors that affect the greater frequency of changes for you? You must determine what documentation is missing from your medical record that medically necessitates having the greater quantity and then work with your medical professional to get the missing information included in your records and have your supplier submit them to Medicare. Please note that a letter from a nurse or doctor is not sufficient nor is just having it listed on your prescription. The justification of your need for additional supplies must be in your medical record. To learn more read UOAA’s blog “Know What’s In Your Medical Record”.

Any claim that goes over the allowable quantity is automatically denied in the Medicare billing system. It must then be appealed and the supplier has to show the documentation that proves medical necessity etc.  Appeal denial is so frequent that most suppliers no longer advance the increased amounts while waiting for an appeal decision and do not automatically file appeals. They only submit claims for the allowable limits and then the consumer has to pay out of pocket for any overages. 

Given the cumbersome frustrating process, before you deal with the hassle, UOAA suggests that you consider being re-evaluated by an ostomy nurse. Together you can evaluate why you need more supplies and determine if you need a different pouching system or can find another work around.  For example someone who uses 3-5 pouches per day may benefit from changing to a drainable pouch. If there isn’t an ostomy nurse in your local area, some facilities have telemedicine options or UOAA has a self-pay virtual ostomy clinic. There are many different types of supplies available to meet varied needs of ostomates and remedy the challenges that occur over the lifetime of an ostomy. A certified Wound Ostomy Continence (WOC) nurse is the ideal person to assess your situation and make recommendations. 

Increasing the number of pouches is not the solution for every problem. For example someone with a high-output stoma producing greater than 2L of liquid stool daily will want to first consider looking at their diet by working with a dietician and reading UOAA’s Eating with an Ostomy information. In some situations the solution may be adding medications or the timing of medication and eating.  This is why it is important to consult with your medical team or obtain a medical team that is responsive to your needs.

After you have consulted with your medical team and determined that you have a justifiable need that can be documented for more pouches, then pursue the Medicare appeal process with your supplier. Be prepared to purchase your additional supplies while you wait for the Medicare decision. Try to get your needed supplies at the lowest cost through discounts and free supplies. UOAA lists lower cost supply resources here.

If your appeal is denied, another resource is your local State Health Insurance Assistance Program (SHIP). They can assist you with correcting billing issues, and filing complaints and appeals. With your permission, SHIP will work with Medicare directly to help solve problems on your behalf. Find your local SHIP here.

The information we just discussed applies to people with traditional Medicare, if you have a Medicare Advantage plan you should follow the appeal procedure of your plan. You may also request a case manager who is an employee of the plan for assistance with the process. The decision-making process is different with Medicare Advantage plans. 

UOAA has been advocating on this issue for many years and we will continue to beat this drum with the Centers for Medicare and Medicaid Services (CMS) and their coverage jurisdiction Medical Directors until improvements are made.