Squid Game: The Challenge Contestant Embraces Life with an Ostomy

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My ileostomy and how it gave me the confidence to participate in such a wild adventure!

By Kathy Kelly #258

Squid Game: The Challenge Season 2 streams on Netflix starting November 4

At age 35, while pregnant with my 4th child, I was diagnosed with ulcerative colitis. The symptoms appeared out of nowhere during my pregnancy and unfortunately, because I was pregnant, there was very little that could be done to manage my disease.  After giving birth to my daughter, I immediately sought medical intervention to address my UC symptoms, but relief was terribly elusive.  I went from being an active, social, and extroverted person to not wanting to leave my house.  Not only did I have little to no control or predictability of my colon, but I also struggled with intense cramping, mouth sores, and copious blood loss.

Kathy Kelly is featured on the poster of Season 2 of Squid Game: The Challenge on Netflix.

Over the next 18 months, I tried several different “Biologics” and endured multiple rounds of steroids.  Each new medicine brought with it the hope of relief, but that hope was never realized as I never experienced meaningful healing.  I spiraled into thinking and feeling like I would never be healthy again – UC was now dictating the terms of my quality of life.

After nearly 20 months of a losing battle with UC, my doctor made me aware of the “nuclear” option – I could have my colon removed and be fully healed of UC.  In hindsight, it seems so obvious, but at the time, I remember shuddering at the thought.  Yes, my UC was awful and yes, I was spending all of my waking hours desperately trying to manage my symptoms.  But having “a bag” felt like it was way too extreme.  My husband and I discussed it and I met with other GI docs to discuss the process and the more I learned about it, the more the lifestyle was normalized for me.  I found people online that shared their experiences and one thing stuck out to me – they had control.  For nearly two years at this point, I had completely lacked control.

So, in May 2021, after 22 months of suffering in relative silence with UC and with the support of my medical team, I had my colon removed and was given an ileostomy.  While there was certainly an adjustment period – learning how to change my bag and care for my stoma – the immediate relief was shocking.  However, it wasn’t all positive.  Even some of my well-intentioned nurses would say things like “hopefully, this is just temporary and you’ll be back to normal soon”, and I remember feeling like neither my UC nor my new reality with an ileostomy was normal.  I quickly overcame that because of the obvious improvements to my health and quality of life. I made the decision just 4 months later to make my ileostomy permanent by having my rectum removed.

Having a permanent ileostomy has certainly been a journey – I had a peristomal hernia that required an additional surgery and I’ve experienced all of the typical “first timer” experiences – catastrophic leakages while on a date or at a friend’s house.  But, I can stay with completely certainty that my ileostomy has given me my life back.  I’m as active as ever.

I’m engaged in relationships with my husband, children, family, and friends.  I’m excited to be pushed out of comfort zone again – and to that end, I recently participated in Season 2 of Squid Game: The Challenge on Netflix!

We watched the first season of Squidgame Game: The Challenge as a family and we loved it! My husband made a silly comment to the kids saying “your mom would be able to kill all of those players” and when the kids saw that they were casting season 2, they begged me to apply. I just assumed my application would be lost in the thousands of emails, but fortunately something caught their attention!

It was an incredible experience that involved international travel, intense competition, and long hours of uninterrupted filming. My doctor even said limited bathroom breaks would probably be easier for me than most!

If I was still dealing with UC, I would’ve never trusted my body to take on something this challenging and stressful!  My ileostomy has restored my health, my energy, and my control and I’m incredibly grateful for it!

I think most of the friends I made while filming would be SHOCKED to learn I have no colon-which I love! My bag saved my life, and it’s something I’m really thankful for.

My husband was my biggest supporter. His encouragement allowed me to engage and play without any of the self-imposed pressure that had been building for months with this big secret! Now that the show is airing it is no surprise to friends that I would do something like this because I am so competitive and love engaging with people!

 

Editor’s note: You can now cheer on Kathy Kelly on Squid Game: The Challenge Season 2 on Netflix. Win or lose, we know the resilience of an ostomate is not a force to reckoned with! United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for people who have had or who will have ostomy or continent diversion surgery.

MY JOURNEY TO BECOMING A CERTIFIED OSTOMY NURSE

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UOAA is excited to announce that the 2025 recipient of the Educational Award for Ostomy Nurse Certification is Erin Young from California!

Below Erin shares a little bit about herself and her motivation to become a certified ostomy nurse.

I am incredibly grateful to have been awarded a scholarship to support my ostomy certification education. This generous gift eases the financial aspect of continuing my education, but more importantly, it serves as a reminder of the encouragement and belief others have in my journey. Having this investment enables me to give back in meaningful ways to the ostomate community and inspires me to keep moving forward with purpose.

I have wanted to be a nurse for as long as I can remember. My dream began in kindergarten and has guided me ever since. I started my healthcare journey as a Certified Nursing Assistant while attending nursing school. For the past six years, I have been fortunate to work in diverse areas like telemetry, oncology, intermediate care, and a GI clinic. Each role has helped me grow as a nurse, teaching me new skills, deepening my compassion, and showing me how healthcare can change lives.

I want to support the ostomate community not just with clinical expertise, but also with empathy rooted in shared experience.

Becoming a certified ostomy nurse is more than just a career goal for me, but is something that feels deeply personal. Seven years ago, I received a life-changing medical diagnosis that sent me down an unexpected road. I underwent a total colectomy and ultimately chose to have a j-pouch. Several years later, I became a member of the ostomate community when I had surgery for an ileostomy. This profound experience has been transformative in ways I never could have imagined. Surgery restored my health, but it also introduced me to the physical and emotional challenges that come with adjusting to living with an ostomy. I’ve learned firsthand what it feels like to navigate those vulnerable, overwhelming moments, and I know how meaningful it is to connect with someone who truly understands.

Pursuing certification as an ostomy nurse feels like a calling. I want to support the ostomate community not just with clinical expertise, but also with empathy rooted in shared experience. Saying “I’ve been there too” builds trust and comfort that textbooks can’t teach. Every day, I bring that understanding to the bedside. My goal is to give back to the community that supported me and to be the nurse I leaned on after surgery. I want my patients to feel seen, heard, and never alone. Every patient deserves this.

Becoming a certified ostomy nurse is not just a career move, it’s a calling that is the culmination of my lived experience and the start of a purposeful contribution to a field that changed my life. I see it as a way to advance my career and make a meaningful difference for patients facing an isolating experience. I’m ready to give back, to lead with compassion, and to help others not just survive, but thrive with an ostomy. This journey honors my past, embraces my present, and dedicates my future to caring for others living with ostomies.

Congratulations, Erin!

The next scholarship application will open, pending funding availability, in January 2026 and closes on June 30, 2026. 

 

Find an Ostomy Nurse

UOAA Advocates Bring Patient Voices to Capitol Hill

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By Jeanine Gleba, UOAA Advocacy Manager

Despite the government shutdown, United Ostomy Associations of America (UOAA) successfully hosted Patient Voices on the Hill Day on October 8th. UOAA advocates from across the country—strategically chosen from districts and states with influential lawmakers on health policy—traveled to Washington, D.C. to protect access to ostomy and urological supplies.

💬 Patients Speak Out

During a full day of meetings, advocates shared powerful clinical insights and personal stories to educate Members of Congress and Administration officials about the dangers of including ostomy and urological supplies in the Competitive Bidding Program (CBP). They highlighted how treating these medical devices as “one-size-fits-all” equipment could severely limit access to essential, individualized prosthetic supplies—putting patient safety, health, and quality of life at risk.

The patient stories shared were deeply moving. Advocates showed photos, supplies, and firsthand experiences illustrating the physical and emotional impact of pouch leaks, skin damage, and the challenges of living with an ostomy. Their voices made the issue personal, underscoring the human cost of misguided policy changes.

In every meeting, UOAA advocates called for Congressional oversight to ensure that ostomy and urological prosthetic devices remain excluded from the CBP proposal.

Patient Voices on the Hill Day Advocates included, back row from left: Dr. Diego Schaps, Mark Jassey, Rick Riessle, Rolf Benirshke and Mike McGinty Middle row from left: Lisa Donovan, Jeanine Gleba, Jenny Levinson, Laura Kaiser (APRN, CWOCN) Briana Hovermale, Jessica Pelle, Colleen Seeber-Combs, Theresa Johnson, Megan Miller (CWOCN), Christine Ryan, Rebecca Mcelyea (CWOCN) and Kimberly Sanders. Front row from left: Reilly and Tracy Otto, Steve Kearley. Missing from photo: Sananda A. Jones. Photo by Ed Pfueller, UOAA Communications and Outreach Manager.

The fly-in brought together 16 dedicated patient advocates and caregivers, including ostomy nurses and leaders from UOAA, Convatec, and a representative from the WOCN Society. Together, they conducted 30 meetings across Capitol Hill—8 in the Senate and 22 in the House—engaging 16 Republican and 14 Democratic offices. Lawmakers on both sides of the aisle expressed strong interest in safeguarding patient access to medically necessary products.

As a result, the event generated significant bipartisan support and strengthened relationships with Congressional champions committed to protecting access to ostomy and urological supplies as essential prosthetic medical devices.

We extend our deepest gratitude to all the advocates who took time from their lives to speak out on behalf of our community, and to Convatec for joining forces with us to make this effort possible.

In addition, thank you to the 1,000 advocates nationwide who responded to our most recent Call to Action!  Your stories and outreach encouraged Representatives to sign a Congressional Letter led by Reps. Neal Dunn (R-FL) and Greg Murphy (R-NC)—both urologists—urging CMS and OMB to withdraw the proposal. The final letter, sent on October 9, 2025, was signed by 26 Members of Congress, a strong showing of bipartisan support. UOAA’s advocacy efforts were recognized in a recent HME News Article.

At this time, there are no open action alerts for this campaign. However, if you have received a response from your elected official, please contact us at advocacy@ostomy.org so we can continue the dialogue with their offices. 

We will continue to provide updates as they become available. For background information, updates, and ways to get involved—including social media tools—please visit our Competitive Bidding advocacy page.

We expect the final ruling on this issue in November. Regardless of the outcome, please know that UOAA remains steadfast in its commitment to work with policymakers and ensure continued access to the supplies that support dignity, health, and quality of life for all people living with an ostomy.

Thank you for standing with us and lending your voice to this vital effort.

NEW UPDATE! List of  specific Lawmakers wen need to contact ASAP – take action here.

Join UOAA’s Advocacy Network to get the latest alerts to take advocacy action on issues important to our ostomy and continent diversion community!

Celebrate World Ostomy Day with UOAA!

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

Each year United Ostomy Associations of America (UOAA) celebrates Ostomy Awareness Day in the United States on the first Saturday of October. Coincidentally, every three years on the first Saturday it is World Ostomy Day. This year we are celebrating World Ostomy Day around the globe on Saturday, October 4, 2025.  The International Ostomy Association determined this year’s theme as “Invisible Disabilities. Visible Support. The Global Unity of Ostomates. The goal of this theme is “Bringing light to uncover the invisible ostomy and create visible support. Fostering conversation, global awareness, and ensuring equity for our communities both locally and globally.” 

UOAA hopes everyone will be part of the “Visible Support” so many people are seeking after surgery. We also recognize that not all people living with an ostomy feel a connection to the  “Invisible Disabilities” theme but we seek to educate all ostomates on their workplace rights and federal ADA protections. Together we can raise positive awareness and smash stigmas to ensure all ostomates are universally accepted and treated equally with dignity and respect.

This year UOAA has named Keely Cat-Wells as this year’s World Ostomy Day Champion. “Being a World Ostomy Day Champion is a huge honour. It’s about using my platform to bring visibility to a community that is too often overlooked, even within the wider disability movement. Having an ostomy has shaped so much of my lived experience, and I know how isolating it can feel when society erases or stigmatizes something so fundamental to your health and survival,” she says.

We’re also excited to announce that UOAA has become members of the Hidden Disabilities: Sunflower Program. Have you seen the Sunflower? This is a global program whose tagline is “Making the invisible visible.” which makes them the perfect partner for this year’s World Ostomy Day! The Sunflower empowers individuals to voluntarily share that they have a non-visible condition and may need additional help, understanding, or simply more time.  Sunflower members iinclude companies such as United Airlines and LEGO and airports around the world. UOAA is working with them to create dedicated ostomy-content on their website. Check out the upcoming Hidden Disabilities Sunflower Conversations Podcast on October 4 where our champion Keely Cat-Wells appears alongside Nate Hadlock, Chair of UOAA’s Patient Advisory Board.

A Special Edition of Ostomy Academy

To kick-off the weekend events and celebrate World Ostomy Day UOAA is partnering with the nonprofit organizations South Asian IBD Alliance (SAIA), Color of Gastrointestinal Illnesses and Cheeky Charity for a special edition Ostomy Academy on Cultural Influences on Ostomy Life on Friday, October 3, 2025 at noon EST. In this conversation, we’ll address the unique challenges people may face within their communities—based on their ethnicity, culture, sexual orientation, or gender—and explore the support systems that can help. Register here.

Find or be the “Visible Support”

Visible ostomy support can come in many forms such as becoming a member of one of UOAA’s 285 Affiliated Support Groups.  Despite assurances from medical professionals, people facing ostomy surgery may feel scared or isolated. There is no substitute for peer support, the visual proof provided by someone who has had similar surgery and learned to live well with an ostomy.

What better “visible support” is there then being an “ostomy friend”? UOAA is proud to partner with Embracing Ostomy Life in the Team HOPE program. Team HOPE matches volunteer veteran/established people living with an ostomy, who have completed UOAA’s online “Ostomy Friends” training course, with new ostomates. Connections are made based on factors like gender, type of ostomy, lifestyle, and age. Get involved in this person-to-person support to help new ostomates achieve an optimal physical, mental and social recovery.

Another great form of visible ostomy support is attending the festive atmosphere of one of our eight Run for Resilience Ostomy 5k events around the country or join the Virtual Ostomy 5k in your corner of the world! This year’s World Ostomy Day T-Shirt is still available to virtual participants who sign-up by September 23rd! These events are also a critical fundraiser for the services and programs provided by UOAA so even if you don’t want to walk, roll, or run, consider cheering others on and a donation to celebrate the resilience of all people living with an ostomy.

Ostomy companies are another visible form of support for the community and their Ostomy 5k event sponsorships help off-set costs and make these gatherings possible. Many will have reps on hand to share products and talk with attendees. See the World Ostomy Day page for all the ways sponsors are celebrating online and at events.

Share your “Visible Support” on Social Media

Give thanks for your Support! Use social media to highlight the people, groups, orgs or resources that have supported you in life with an ostomy. Use Hashtags like #WorldOstomyDay #VisibleSupport #InvisibleDisabilities and be sure to tag UOAA.

We make it easy to share even if you are not on social media you can click on a storyprompt here here to record a video automatically or leave a text response or photos for our collection of “Visible Support” stories!

However you choose to celebrate, let us know! Share your photos and ideas for raising ostomy awareness this year with UOAA. 

To learn more and get involved in World Ostomy Day 2025 please visit https://www.ostomy.org/world-ostomy-day/

World Ostomy Day Champion Keely Cat-Wells is a Leader in Breaking Down Barriers

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Keely Cat-Wells is approaching the 10th anniversary of her ileostomy surgery. Before the surgery at 17, Keely endured years of misdiagnoses, experimental procedures, and was incorrectly told her pain was imagined. She was forced to leave college and put aside her dream of becoming a professional dancer. The experience left scars of trauma, but it also gave her a perspective that continues to fuel her mission today.

Living with chronic illness, PTSD and a permanent ileostomy, she has turned those challenges into resilience and purpose. In the years since, she has found joy, adventure, and meaning, advocating alongside friends, building new pathways for others, and creating opportunities she once wished had existed for herself.

That lived experience directly informs her role as the founder and CEO of Making Space, a talent and learning platform that has supported over 10,000 Disabled professionals through employment and education, and was recently named one of Forbes’ Top 100 Companies in Accessibility.

United Ostomy Associations of America (UOAA) has named Keely as this year’s World Ostomy Day Champion. The International Ostomy Association determined this year’s theme as “Invisible Disabilities. Visible Support. The Global Unity of Ostomates and the day is being celebrated on Saturday, October 4, 2025.

Highlighting ostomy awareness is about normalizing the conversation, breaking down barriers of shame, and ensuring that others with ostomies see themselves represented with dignity.

“Being a World Ostomy Day Champion is a huge honour. It’s about using my platform to bring visibility to a community that is tooPhoto of Keely a white woman with blond hair wearing a black midriff shirt with a black ostomy pouch just visible above the waistline of her black pants.  often overlooked, even within the wider disability movement. Having an ostomy has shaped so much of my lived experience, and I know how isolating it can feel when society erases or stigmatizes something so fundamental to your health and survival,” she says.

Keely is a Forbes 30 Under 30 honoree, the youngest-ever Presidential Leadership Scholar, and a Gloria Steinem Fellow. Keely has served on the advisory board of Lady Gaga’s Born This Way Foundation and has written on disability employment and representation in TIME, Fast Company, Rolling Stone, and more.

She also co-produced a film with Reese Witherspoon’s Hello Sunshine that helped spark policy reform for Disabled travelers, and has spoken at leading companies, governments, and global institutions to challenge perceptions of disability.

Prior to founding Making Space, Keely founded C Talent, a talent agency that reshaped disability representation in media and grew a roster reaching more than 50 million people. Acquired in 2022, C Talent became the largest acquisition of a company specializing in Disabled talent.

Raising ostomy awareness is a passion for Keely.

“Highlighting ostomy awareness is about normalizing the conversation, breaking down barriers of shame, and ensuring that others with ostomies see themselves represented with dignity. It’s also about pushing for systemic change, because accessibility, healthcare, and inclusion must extend to every part of our lives, including how we navigate the world with medical devices,” she says.

“We have legal rights, and our access needs must be upheld. Public restroom access, supply coverage, and travel accommodations, and more are disability justice issues, not optional extras.”

UOAA recognizes that not all people living with an ostomy feel a connection to this year’s “Invisible Disabilities” theme or the larger Disability rights movement but we seek to educate all ostomates on their workplace rights and federal ADA protections. UOAA works toward a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically, and psychologically.

Living with an ostomy means navigating many of the same barriers faced by other Disabled people: inaccessible spaces, employment discrimination, lack of workplace accommodations, and stigma that silences.Keely wearing black on the white marble steps of the U.S. Capitol building in Washington, DC

“Disability is broad, diverse, and intersectional. Including ostomates within the movement strengthens it, ensuring that no Disabled person feels left out of their own community,” Keely says. “It is easy to feel “not Disabled enough” within disability spaces, and it is also easy to feel “too Disabled” in non-Disabled spaces.” She believes ostomate stories can change perceptions of what disability looks like and that our experiences deserve to be seen and valued within the broader Disability community.

“We have legal rights, and our access needs must be upheld. Public restroom access, supply coverage, and travel accommodations, and more are disability justice issues, not optional extras.”

In her 10 years with an ostomy Keely has seen positive changes in ostomy awareness and acceptance.

“It has been awesome watching the increase in people sharing their stories openly on social media. What used to feel like something hidden or stigmatized is now being reclaimed with pride, people are creating visibility, building community, and sparking action just by speaking their truth.”

In her business work she has also seen brands start to reflect change. “When companies like LEGO include ostomy representation in their products, it sends such a strong message: that our experiences are valid, visible, and worth celebrating. Representation like that normalizes the conversation and gives young people a chance to grow up seeing themselves reflected in the world around them.”

Of course, both Keely and UOAA recognize that there’s still work to do.

“Stigma remains, and too many people continue to face discrimination, lack of access to the right supplies, or barriers when traveling and working. To keep driving progress, we all need to keep telling our stories, keep pushing for policy changes, and keep holding brands, governments, and healthcare systems accountable.”

To find out more from Keely Cat-Wells, check out the upcoming Hidden Disabilities Sunflower Conversations Podcast on October 4 where she appears alongside Nate Hadlock, Chair of UOAA’s Patient Advisory Board. To get involved in World Ostomy Day 2025 please visit https://www.ostomy.org/world-ostomy-day/

UOAA is Here for Bladder Cancer Survivors

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Since its inception 20 Years ago United Ostomy Associations of America, Inc (UOAA) has supported and welcomed members living with a urostomy (ileal conduit) or urinary diversion as a result of bladder cancer and related conditions.

Urostomy surgery is explained in a page from UOAA’s Living with a Urostomy Guide

Each May is Bladder Cancer Awareness Month. The American Cancer Society estimates about 84,870 new cases of bladder cancer in the United States for 2025 and about 17,420 deaths from bladder cancer (about 12,640 in men and 4,780 in women)

While this common cancer is most often treated without radical surgery a urologist may suggest bladder removal surgery to stop the cancer if a bladder tumor reaches the deeper muscle wall or resists other therapy. A urinary diversion is needed to replace the bladder. This involves using parts of the intestines to allow urine to pass from the kidneys to either an internal urinary reservoir pouch such as Indiana Pouch or a neobladder.

For example, Deion “Coach Prime” Sanders recently went public with his journey and life-saving bladder creation surgery for bladder cancer.

A urostomy or an external ileal conduit, is when a stoma is formed. An ostomy pouch is worn over the stoma to collect urine.

With surgery comes new things to learn and adjust to in order to achieve the quality of life you were used to before bladder cancer.

UOAA has over 270 Affiliated Support Groups around the United States. Bladder cancer survivors attend many of them and also serve as volunteers and leaders. Peer support and preparation can put you on the path to success in what may be a challenging time both emotionally and physically.

We recognize that those with an ileostomy, colostomy and various gastrointestinal disorders may dominate public conversations and education about living with an ostomy. Please know that the voices of urostomates and those with a urinary diversion are also welcome at all UOAA events and supported and empowered by UOAA.

UOAA’s Living with a Urostomy Guide is available for free online. Created by ostomy nurses with input from a urostomy patient and a leading urologist, this trusted resource is vital to anyone who has or may have to have this life-saving surgery.

Learn about the unique aspects of a urostomy pouch and options that help improve sleep for urostomates like a night drainage bag.

Ostomy.org is also home to a guide on continent urostomies and other specific considerations.

UOAA advocates on a national level for all people living with an ostomy or continent diversion. Consider taking out a National Individual Membership to help amplify our voices and receive special member benefits along the way.

Check out our many self-advocacy tools designed to help you know what to expect and to take control of your healthcare.

Having access to an ostomy nurse is critical to solve issues before they worsen. You can use our Outpatient Ostomy Services Finder to find a clinic near you or consult a certified nurse online with our Virtual Ostomy Clinic provided by The Wound Company. We also have information on what nurses need to know about urostomy management.

It’s important to learn the facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, travel, and embrace a new normal life. Reading patient stories from both the male urostomy patient and female bladder cancer survivor perspectives are also helpful.

Seize any opportunity to meet other urostomates. UOAA’s 2025 National Conference in August will feature special sessions and meet-up opportunities for people living with a urostomy.

People living with an urostomy as a result of bladder cancer may experience unique sexual issues. Consult with you doctor but also learn about some common issues in our sexuality and intimacy guide.

Misinformation and stigmas surrounding both ostomy surgery and bladder cancer still exist. Nonprofits like Bladder Cancer Advocacy Network (BCAN) and UOAA are working to improve quality of life with support and information. Bladder cancer survivors are an important part of UOAA, join with us to create a better tomorrow.

Meet Christina & Molly – Two Friends, One Mission

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We’re Christina and Molly — best friends who both have Crohn’s disease and ileostomies. Over the years, we’ve come to realize what a gift it is to have each other’s support on this journey, and now we want to share that gift with others.

Christina is 43 and has lived with Crohn’s for 24 years. She’s had her ileostomy for 13 years and lives in Texas with her husband and their 7-year-old son. Her son was conceived and delivered while she had her ileostomy, proving that yes, a successful pregnancy can be done!

Molly is 38 and has had Crohn’s for 21 years and an ileostomy for 18. Born and raised on the island of Oahu, Hawaii, she now splits her time between California and Hawaii. Thanks to her ileostomy, she has a great quality of life — she wakesurfs, does hot yoga, plays pickleball, and, best of all, no longer has to plan her life around bathroom trips.

We’ve partnered with UOAA to create videos and share resources that provide honest, uplifting, and helpful support for ostomates — whether you’re newly adjusting or have had your ostomy for years. Your life isn’t over– you’re just simply learning your new normal. We are hoping to help you thrive in your new normal living with an ostomy.

Christina and Molly started sharing their health journeys on YouTube at Crohn’s Talk: Belly Laughs and Battles where you can find more of their videos. Stay tuned to @TheUOAAInc on YouTube to discover new videos by them for the ostomy community in the weeks ahead. Feel free to comment and let us know what topics  you would like to see discussed. Disclaimer: They are not providing medical advice, but sharing to help others. 

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.

73 Years with an Ostomy

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Remembering Ruth Fawley

By Ed Pfueller, UOAA Communications and Outreach Manager

In 1950, Ruth Fawley celebrated her 21st birthday, but the following decade was spent mainly in hospitals. Her ulcerative colitis led to an ostomy in 1951 and multiple unsuccessful intestinal surgeries. At one point, she was in a life-threatening coma for a week. Considering her health struggles, few people at the time might have predicted she would live an active life and reach the age of ninety-four before her passing in 2024.

A turning point in Fawley’s life came with her introduction to Dr. Harry Ellicott Bacon, Professor and Chairman of the Department of Proctology at Temple University Hospital in Philadelphia, Pennsylvania. He performed ileostomy revisions and subsequent surgeries that ultimately allowed her to lead a more normal life.

Dr. Bacon was an internationally renowned and innovative surgeon who prioritized the emotional well-being of his patients. He invited Ruth to a peer support group for women with ostomies and related surgeries.

Ruth worked as an executive secretary and while working at the travel magazine Holiday met many well-known authors, likely sparking her lifelong passion for travel.

She married her longtime husband, J. Russell Fawley, Jr., in 1959. When it came to starting a family, doctors at that time were not sure if a woman with an ileostomy could get pregnant and give birth. “She would later joke that out of the nineteen surgeries she endured, the only time she left the hospital with more than she went in with was when she had her two Cesareans,” remembers her daughter Nancy Fawley.

She thinks her mother would want fellow ostomates reading this article, “To be inspired and know you can have a family, travel and have a long normal life with an ostomy.”

Nancy says her mother was a wonderful cook and loved to garden. Ruth loved the water, whether swimming at the Jersey Shore or doing near-daily water aerobics later in life. Ruth also had a keen artistic eye, loved to sew and was well-known for the dynamic use of colors in her quilts.

Like many of her generation, Ruth carried on quietly in life with an ostomy but had to manage the challenges of short bowel from her many surgeries. She was a longtime supporter and member of UOA and UOAA and an avid reader of The Phoenix Magazine.

A June 2011 article on Army Pilot Bob Cuyler’s story of flying in a combat zone with an ostomy inspired her to write a letter to him. He responded in kind by sending her a Presentation Flag his unit took into active duty, which she cherished for years after. In her return letter, she thanks Cuyler for his service and fortitude and shares that even finding ostomy appliances was difficult in those early days. “An ileostomy was not spoken of and I know the humiliation, embarrassment and stigma attached to it,” she shared. But her sense of humor shines through as she ends her letter joking that the old Ostomy Quarterly magazines used to arrive in plain brown paper wrappers, leading her neighbor to think she was getting Playboy Magazine!

“If I get to the gates of heaven and still have this ostomy pouch I’m turning around!”

Nancy says that her mother shared many Phoenix articles with her over the years so she would have a better understanding of her condition. “I relied on this information when I worked with doctors, health care professionals and hospice caregivers who had little to no experience with patients with an ileostomy,” Nancy says.

In honor of her mother’s memory, Nancy has donated to UOAA at The Phoenix Society Diamond level in part because of UOAA’s continued commitment to ostomy education for both patients and medical professionals.

In her later years, Ruth herself became a caretaker for her husband as he battled with Parkinson’s disease and dementia before his death in 2014. During this time, she created a striking quilt with dynamic colors she entitled “meltdown.” Ruth’s colors live on in the many quilts she gifted to family and friends.

In her final months, Nancy got to hear more stories of her mother’s travels in England and France and a doctor’s direction that a bit of scotch can help in digestion. She thinks her mother would want fellow ostomates reading this article, “To be inspired and know you can have a family, travel and have a long normal life with an ostomy.”

At the end of her 94-years she had just about enough of dealing with it though, “If I get to the gates of heaven and still have this ostomy pouch I’m turning around!” she told her daughter. The amazing mix of humor and resilience required after 73 years with an ostomy still shining through.

 

The Phoenix Society recognizes those individuals who are able to sustain and/or increase their total annual donation of $500 or more during each calendar year. Become a member of The Phoenix Society or donate at any level to help UOAA fulfill its mission to promote the quality of life for people with ostomies and continent diversions through information, support, advocacy, and collaboration. UOAA is thankful for those who give, including Nancy Fawley and the other Diamond and Ruby Level members listed below. 

 

Celebrating UOAA Volunteers

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By Christine Ryan, UOAA Executive Director

In honor of the recent National Volunteer Week, UOAA would like to pause for a moment to recognize the extraordinary volunteers who help us achieve our mission. You’re simply the best!

Did you know in 2024 that 360 volunteers gave over 6900 hours to support the many projects and efforts UOAA worked on? This included 11 individuals who served as volunteer leaders on our 2024 Board of Directors. And we cannot say enough about the passionate volunteers who are working tirelessly on our 2025 Conference Planning Committee. Additionally, all of the members serving on our Medical Advisory Board and Patient Advisory Board are also dedicated volunteer leaders.

We also have 2,000 volunteer advocates in our Advocacy Network ready to answer our call to take action on the causes important to our community!

Left: UOAA National Leadership Volunteers at a National Conference. Right: UOAA Advocacy Volunteers in Washington D.C. with the Digestive Disease National Coalition (DDNC).

UOAA is proud of the passionate volunteers on our Advocacy, Education and Children to Young Adult Webpages Development Committees, all working behind the scenes advocating and creating educational resources to ensure UOAA is the trusted go-to place for ostomy and continent diversion information. Some of these volunteers have been serving for almost a decade! Then of course, we have many volunteers working on ad hoc special projects from designing courses to storytelling on Capitol Hill and in our blogs!  

Without all of these dedicated individuals sharing their time and talents with our small non-profit organization we would not be making a priceless impact or be where we are today! 

During this special time, UOAA would also like to formally announce its 2024 Distinguished Volunteer of the Year is Laurie Corona, MSN, RN, CWON. Laurie, a retired Certified Ostomy Nurse, has been on UOAA’s Education Committee since March of 2021, and became a Co-Chair of the Committee in May of 2022. She has been instrumental in creating the new versions of the Living with an Ileostomy Guide, Living with a Colostomy Guide, Living with a Urostomy Guide, Living with a J-Pouch, and Living with a Nephrostomy Guide, all of which are now available on UOAA’s website. She also worked with other members of the Committee and Board Members on the 2024 version of the New Ostomy Patient Guide. 

Laurie has worked tirelessly on ensuring UOAA has the most current, relevant and up-to-date educational resources to share with the ostomy community. Needless to say, over the past 4 years Laurie has dedicated countless volunteer hours to UOAA and is very passionate about helping the ostomy community through education and information. Laurie is stepping off of the Education Committee in May, 2025 and she is wished all the best in her future endeavors.

Feeling inspired to make a difference in the lives of the ostomy and continent diversion communities?  You can get involved with UOAA in the following ways:

  • Join our Advocacy Network
  • Join a UOAA Committee seeking new members
  • Become an Ostomy Friend – If you would like to volunteer your time to support and inspire others living with a new ostomy – complete UOAA’s Ostomy Friends Online Course and you will be matched through “Team HOPE” with a new ostomate, creating a personal connection between the two of you.
  • Would you like to become a social media ambassador? Contact our Communications and Outreach Manager to learn more.
  • Interested in leading UOAA on its Board of Directors and ensuring a strong future for the organization? Our election process for a President Elect and 2026 Director at Large will begin in early July. Look for more information on our Become A Leader webpage soon.
  • Attending our 2025 National Conference in Orlando, FL this August? We need volunteers. Contact Sharon Darnov, this year’s Conference Volunteer Coordinator and she will discuss the opportunities available during the event.

Would you like to establish an Affiliated Support Group in your area? Click here to learn more about how to get started and the benefits of affiliating with UOAA.

To all of UOAA’s volunteers: Thank you.  We celebrate your contributions to UOAA today and every day!