United Ostomy Associations of America
  • HOME
  • OSTOMY INFORMATION
    • Ostomy Information
      • What Is An Ostomy?
      • Living with an Ostomy: FAQs
      • Diet + Nutrition
      • Ostomy Skin Care
      • Sexuality
      • Bill Of Rights
      • New Ostomy Patient Guide
    • My Ostomy
      • Ileostomy
      • Colostomy
      • Urostomy
      • J-Pouch
      • Continent Diversions + Other Ostomy Types
      • Temporary Ostomy
      • Short Bowel Syndrome
      • Español
    • Children to Young Adults with Ostomies
      • Infant/Toddler (0-3 Years)
      • Preschool (3-5 Years)
      • Elementary School (6-9 Years)
      • Pre-Adolescent (10-13 Years)
      • Adolescent (14-18 Years)
      • Young Adult (18-25 Years)
      • Parents & Clinicians Resources
      • Know Your Rights
      • What To Expect After Surgery
      • Odor Control
      • Fast Facts
      • Ostomy Game
    • Crohn’s Disease & Ulcerative Colitis Information
      • Defining, Caring and Treating
      • Preparing for Ostomy Surgery
      • Common Issues, Managing Diet, Mental Health
      • Intimacy, Fertility and Pregnancy
      • Resources
    • General Information
      • UOAA Ostomy Marketplace
      • Product + Supply Information
      • UOAA Resources Library
      • Resources for Nurses/Home Health
      • Travel Tips + TSA
      • Donate Your Ostomy Supplies
      • Emergency Supplies
      • Related Links
      • UOAA Virtual Ostomy Clinic
      • Outpatient Ostomy Services Locator
  • SUPPORT
      • discussion
        Ostomy 101:
        Easily communicate “What is an ostomy?" with our infographic.

        Read More

    • Find Support
      • Support Group Finder
      • Support Group Websites
      • UOAA Virtual Ostomy Clinic
      • Online Peer and Ostomy Support Programs
      • Outpatient Ostomy Services Locator
      • Find a Mental Health Provider
      • Find an Ostomy Nurse
      • Online Discussion Board
      • Apps for Ostomates
      • Emotional Concerns
    • Connect With Us
      • Start/Affiliate Your Group With UOAA
      • Resources For ASGs
      • National Membership
      • Sign Up for Our E-Newsletter
    • Participate
      • Attend An Event
      • Become An Advocate
      • Join Us for a Conference
      • Make A Donation
      • Become a Member of The Phoenix Society
      • Donate Your Ostomy Supplies
      • Take A Survey
  • ADVOCACY
      • portal
        Roadmap to Establishing Outpatient Ostomy Services
        Documents that are available as PDFs to download and print.

        Read More

    • About
      • Advocacy Program
      • Advocacy Priorities
      • 10 Questions to Help You Speak Up and Self-Advocate
    • UOAA Action Center
      • Take Action
      • Competitive Bidding
      • Ostomy and Continent Diversion Patient Bill of Rights Campaign
      • Non-Medical Switching Campaign
      • Join Advocacy Network
      • Find Your Legislator
      • Advocate Tools
    • Other Ways to Get Involved
      • Ostomy Awareness Day
        • Tools
        • Who’s Raising Awareness?
      • Roadmap to Establishing Outpatient Ostomy Services
      • Share Your #MyAccessMatters Story
    • Tools and Resources Library
      • Restroom Access Self-Advocacy Tools
      • Travel Tips + TSA Communication Card
      • Swimming with an Ostomy
      • Workplace Resources
      • Aging with an Ostomy or CD
      • Home Health Tools
      • Webinars
        • Ostomy Supplies and Insurance
        • How to Navigate Insurance and Get Supplies Affordably
    • Take Control of your Healthcare
      • UOAA Virtual Ostomy Clinic
      • Expect More Series & Checklists
      • Additional Advocacy Resources
        • The Americans with Disabilities Act (ADA)
        • Long-Term Care Ombudsman
        • Quality of Care Complaints
        • Medicare Rights Center
  • WHO WE ARE
      • Have a Question for Us?
        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.

        Contact Us

    • About Us
      • Our Mission + History
      • Our Leaders
      • National Sponsors + Partners
      • National Membership
      • Contact Us
    • How We Help
      • Advocacy
      • Awareness
      • Support
      • National Conference
      • Ostomy Nurse Scholarship
    • Get Involved
      • Volunteer
      • Become A Leader
      • Join A Committee
      • Career Opportunities
      • Sign Up for Our E-Newsletter
  • LATEST
  • EVENTS
    • Ostomy Awareness Day
    • Run For Resilience 5K
    • Ostomy Academy
    • Educational Webinars
    • 2027 National Conference
    • Calendar
  • GIVE NOW
  • SEARCH
  • Menu Menu

The Voices of People Living with an Ostomy Were Heard on Capitol Hill

Advocacy, Ostomy News

UOAA Advocacy Event Precedes Introduction of ‘Access to Medical Supplies Act’ Bill

By Jeanine Gleba, UOAA Director of Advocacy

UOAA recently rallied advocates in our Advocacy Network to participate in a virtual Ostomy Hill Day to educate Congress on the greatest threat facing our community in decades: the inclusion of ostomy supplies in Medicare’s Competitive Bidding program.  On September 30, 2026, sixty-five advocates met with members of Congress offices to share their experiences and advocate for access to the ostomy supplies they depend on. Twenty-eight states were represented and 73 offices were visited! 

Shortly before the Hill Day, UOAA provided training with a “mock meeting” and supporting materials to ensure every advocate was prepared for their meetings whether it was the first time they ever met with a lawmaker or were seasoned advocates. Most groups also met in advance to get to know each other and assure a smooth day of meetings. Based on feedback from attendees 100% utilized the training materials and felt it was beneficial for preparedness.

Did we make an impact? According to follow-up information provided by the leaders of the eleven groups that day, ninety-nine percent of the meetings were positive and encouraging as noted from one meeting “This office is on it!”.  Many groups showed the variety of ostomy supplies they rely on for their pouching systems and stressed that ostomy supplies are not one-size-fits-all. Staffers were attentive and engaging in particular expressing interest in any bills and sign-on letters. Immediately following the meetings all group leaders sent leave-behind materials to the offices they visited. UOAA also reached out to specific offices who had additional questions. To exemplify a positive meeting: The California team was pleased that Senator Adam Schiff (CA) asked Dr. Brian McNeil, a former urologist, to be present as his representative. “Dr. McNeil heard our voices and immediately understood the clinical importance of reliable access to appropriate ostomy supplies. He expressed his full support for our efforts.”

It truly makes a difference when people are willing to speak up and put a face and personal story behind these issues. Every conversation, every story, and every advocate who showed up helped bring greater awareness to the challenges facing our community and the importance of preserving access, choice, and quality care. It was evident these supplies should not be included in Medicare’s Competitive Bidding Program. 

As noted by advocate Joanna Burgess-Stocks “I believe a lot was accomplished on Hill Day with our 8 visits.  It was efficient and we made very good use of our time and were able to make a great argument for the negative impact competitive bidding would have on ostomy supplies.  It made me feel good to know that I was doing something to help get the word out about this issue.  I also met some wonderful people in my group and that is always a wonderful thing to be with others living with an ostomy.  I felt proud to tell my friends and family that I made an impact on Capitol Hill!  Sometimes you just have to push yourself from behind to do something a little scary – this was worth it!” 

I am grateful to all of the advocates who showed up to be the voice for the almost 1 million people living with an ostomy in the United States. I’d also like to recognize the amazing leaders who stepped up to lead their groups and give even more time and support to ensure that UOAA had a successful Ostomy Hill Day: 

Group 1: Pennsylvania (Leader – Deborah Popp)
Group 2: New Jersey, Delaware (Leader – Jeanine Gleba)
Group 3: Maryland, Virginia, North Carolina (Leader – Joanna Burgess-Stocks)
Group 4: New York (Leader – Julie Allen)
Group 5: California (Leader – Becky McElysea)
Group 6: Idaho, Nevada, Washington, Colorado (Leader – Justus Anderson)
Group 7: Texas, Oklahoma, Arkansas, Louisiana (Leader – Heather Botteicher)
Group 8: Wisconsin, Michigan (Leader – Justine Bykowski)
Group 9: South Carolina, Florida, Georgia (Leader – Theresa Johnson)
Group 10: Missouri, Indiana, Illinois (Leader – Charlie Grotevant)
Group 11: Connecticut, Maine, Massachusetts, New Hampshire (Leaders – Julie Hyams and Dan Boisvert)

The ostomy community showed Congress that our community is informed, engaged, and determined to be heard. 

Several advocates also helped amplify our message by contributing Op-Eds that were published in media outlets across the country, extending our reach to diverse geographic audiences. To date, seven have been published, including this piece by advocate Scott Wuerch, which raises serious concerns about the potentially devastating consequences of competitive bidding for the ostomy community. You can view them all under our Pressroom.

The timing of our Hill Day proved invaluable with building relationships with these offices and the recent introduction of bill H.R. 10787.  Since the bill introduction the leaders of our groups contacted the 75 offices visited and requested that they become co-sponsors of the bill. Please visit our Action Center to learn how to ask your Representative to co-sponsor the Access to Medical Supplies Act. 

 

October 19, 2026
https://www.ostomy.org/wp-content/uploads/2026/10/Virtual-Ostomy-Hill-Day.png 900 1290 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2026-10-19 09:57:262026-10-19 10:24:36The Voices of People Living with an Ostomy Were Heard on Capitol Hill

KENTUCKY NURSE TO BECOME AN OSTOMY RESOURCE FOR HER RURAL COMMUNITY

Advocacy, Ostomy News, Ostomy Nurse

UOAA is excited to announce that the 2026 recipient of the Educational Award for Ostomy Nurse Certification is Heather Franklin from Kentucky!

Read more about Heather and her motivation to become a certified ostomy nurse.

I am incredibly honored and grateful to be the recipient of United Ostomy Associations of America’s Educational Award for Ostomy Nurse Certification. This scholarship means much more to me than an opportunity to further my education. It represents an opportunity to continue growing as a nurse and to bring specialized ostomy knowledge back to the rural community I am proud to serve.

I have been a registered nurse for eight years and currently work as a float nurse in a small rural hospital in Kentucky. Working in a rural hospital has given me the privilege of caring for people from many different backgrounds and walks of life. I have cared for patients in many areas of the hospital, including medical-surgical units, intensive care, mother-baby, and outpatient settings. Working as a float nurse has taught me to be adaptable, to continue learning, and to recognize the needs of patients across many different stages of their healthcare journey.

Early in my nursing career, I found myself especially drawn to wound care. I became interested in not only treating wounds, but also understanding why they developed, how we could help them heal, and how important patient education was to preventing complications. That interest eventually led me to pursue my wound care certification in 2025.

Becoming wound care certified was an important step for me, but it also opened my eyes to how closely wound care and ostomy care can intersect. I began to see even more clearly how much specialized knowledge can impact a patient’s recovery, confidence, and ability to care for themselves after leaving the hospital.

I believe caring for an ostomy patient means caring for the whole person.

Our community has also seen an increasing number of patients facing abdominal conditions, including cancer, bowel obstructions, and chronic gastrointestinal diseases. Many of these conditions ultimately require surgeries such as bowel resections, which can result in temporary or permanent ostomies.

For a patient who has never encountered an ostomy before, suddenly being told that they will leave the hospital with a stoma can be overwhelming. They are expected to learn how to empty and change their pouch, care for their skin, recognize complications, and adjust to an entirely new way of living—all while recovering from major surgery.

For someone living in a rural community, that education and support can become even more important once they leave the hospital. Resources may not always be readily available, and not every patient has easy access to a healthcare professional with specialized ostomy knowledge.

I have seen firsthand how much patients can benefit from having someone who is willing to slow down, listen, teach, and help them work through problems that may seem overwhelming at first.

One experience that has stayed with me involved an elderly, immobile patient who had a large, unconfined coccyx wound that extended to the bone. Our team had cared for him during multiple admissions, making repeated efforts to help the wound heal. Eventually, his family made the difficult decision to pursue a chronic Foley catheter and colostomy in hopes of giving the wound the best opportunity to heal. With continued care, including negative-pressure wound therapy, the wound was ultimately able to heal.

That experience reminded me that sometimes caring for a patient means looking beyond the immediate wound and considering the entire person and the circumstances affecting their ability to heal.

That is one of the reasons I want to continue my education in ostomy care.

Their (UOAA’s) investment in nurses is also an investment in every patient and family who will benefit from the knowledge we bring back to our communities.

My goal in becoming certified in ostomy care is not simply to add another certification to my name. I want to become a resource for my hospital and the community I serve. I want to help patients feel more prepared and confident before they leave the hospital, and I want to be someone they can turn to when questions or challenges arise.

I also hope to help the nurses around me feel more comfortable caring for patients with ostomies. In a rural hospital, we all wear many hats, and having additional knowledge and resources within our own community can make a meaningful difference in patient care.

Most importantly, I believe caring for an ostomy patient means caring for the whole person.

An ostomy affects much more than the body. It can affect a person’s confidence, independence, relationships, daily activities, and emotional and spiritual well-being. A new ostomy can change the way someone sees themselves and may leave them wondering what their life will look like moving forward.

Patients deserve someone who will listen to those fears without judgment, answer their questions honestly, and remind them that an ostomy does not define who they are or what their future can look like.

I hope to provide that kind of support.

My journey toward becoming an ostomy nurse is really an extension of the nurse I have been working to become throughout my career. My wound care certification gave me the opportunity to deepen my knowledge. This scholarship now gives me the opportunity to take that learning a step further and develop specialized skills in ostomy care.

Ultimately, I want to bring that knowledge back home.

I want to educate. I want to advocate. I want to support patients and families when they are facing something that may feel unfamiliar and frightening. And I want to help other nurses feel more confident caring for patients with ostomies.

I know I still have much to learn, and I am grateful for the opportunity to continue learning.

I am deeply grateful to United Ostomy Associations of America and to the donors who make this scholarship possible. Their investment in nurses is also an investment in every patient and family who will benefit from the knowledge we bring back to our communities.

I am honored to begin this next chapter of my nursing journey, and I hope that the knowledge I gain will allow me to make even a small difference in the lives of the patients and families I am so proud to serve.

Congratulations, Heather!

The next scholarship application will open in January 2027 and closes on June 30, 2027. 

If you’d like to help UOAA continue this scholarship for years to come, please consider making a donation to the Ostomy Nurse Scholarship Fund online, please complete the Donate Form, and at the bottom under the ”Additional Comments” section, please note “Ostomy Nurse Scholarship Fund”. You can also send a check made payable to UOAA, in the memo line include the Fund name, and mail to PO Box 2293, Biddeford, ME  04005-2293.

Find an Ostomy Nurse

October 7, 2026
https://www.ostomy.org/wp-content/uploads/2026/10/Heather-Franklin-1.jpg 1966 1600 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2026-10-07 12:39:562026-10-07 13:22:41KENTUCKY NURSE TO BECOME AN OSTOMY RESOURCE FOR HER RURAL COMMUNITY

A Community of Ostomy Awareness

Advocacy, Colostomy, Events, Ileostomy, jejunostomy, Ostomy 5k, Ostomy 5k, Ostomy Awareness, Ostomy News, Urostomy

Ostomy Awareness Day and the Run for Resilience Ostomy 5k provide a chance for the community to come together.

We are one community that is stronger when working together to educate the public on life-changing and often life-saving ostomy and continent diversion surgeries. Join with UOAA and make a difference on Saturday, October 3, 2026 in celebration of Ostomy Awareness Day.

We hope you’ll join a community gathering at a Run for Resilience Ostomy 5k event around the country, but there are also many ways to make an impact from wherever you live! You can become a fundraiser and share your story, sign a petition, attend a National Support Group meeting, or share a photo/video story of you and your “ostomy community.”  Check out the Ostomy Awareness Day page for the latest ideas and community events.

Virtual events to celebrate Ostomy Awareness Day

UOAA National Support Group Meeting

Find Community this Ostomy Awareness Day! In honor of Ostomy Awareness Day, United Ostomy Associations of America (UOAA) invites everyone to join us for a special National Support Group Meeting featuring guest speakers Nate Hadlock, our 2026 UOAA Ostomy Awareness Day Champion and Kimberly Holiday-Coleman our 2024 Champion.

The meeting will be on Zoom Saturday, October 3, at 7pm ET. Register here to join or reach out to oa@ostomy.org for more info.

Together, we’ll celebrate the strength, resilience, and diverse experiences of people living with ostomies while creating an opportunity to learn, connect, and support one another.

WOCN Ostomy Education Day 

On Saturday, October 3, 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.

Support or Attend the Run for Resilience Ostomy 5k 

The Run for Resilience Ostomy 5k is a celebration of resilience and a gathering of ostomy awareness supporters no matter how far you can walk, run or roll. Virtual Ostomy 5k participants have gone the distance on a treadmill and by swimming, kayaking, riding stationary bicycles, and even horseback riding! Be sure to share your photos of whatever you do!

You can also donate to support others and help us reach our $25,000 fundraising goal!

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 greenways and park locations around the country. See if there is an event near you or somewhere you’d like to travel to.

Events are October 3 in (AL, IL, OH, MI, OR) Sunday, October 4 (ID, NH) and Saturday, October 10 (SC).

Celebrate with our Run for Resilience Sponsors

Sponsors add to the fun and awareness atmosphere of our Ostomy 5k events nationwide. Check out new products and visit with company representatives at sponsor tables. Also check your race bags for special giveaways. 

Convatec is proud to be the Exclusive Diamond Sponsor of the 2026 UOAA Run for  Resilience Ostomy 5K.

We’re excited to walk, run, or roll with the ostomy community at in-person events across the United States on October 3, 4, and 10, 2026. Join an event near you or participate virtually from wherever you are. Register for the 2026 Run for Resilience Ostomy 5K.

We couldn’t just celebrate one Ostomy Awareness Day, we’d rather celebrate #Ostober!

Join us on Facebook and Instagram as we celebrate a whole month of ostomy care, community, and resilience throughout #Ostober.

Join more than 450,000 Convatec me+ members worldwide for free, personalized ostomy support, including access to certified ostomy nurses, product specialists, practical resources, and product samples. Call 1-800-422-8811 to enroll or enroll now!

Hollister and Coloplast are the Platinum sponsors of this year’s Run for Resilience Ostomy 5k.

As we approach Ostomy Awareness Day on October 3rd, Hollister Incorporated invites you to share your #OstomateVoices and to hear about your plans to celebrate the ostomy community! For ideas on how to get involved or get a stoma sticker, check out their website.

Show us Your Community! Share Your Photos/Video.

Take time to celebrate those who have joined you on your ostomy or continent diversion journey. Share photos or make a video with your ostomy friends, family, caregivers, support group, and clinicians. Share on social media and please tag and DM UOAA! Use the hashtags #OstomyDay2026 and #OstomyCommunity when you share your community. Not on social media? Reply to our Storyprompt below or email us at info@ostomy.org to join a community collage.


Advocate for the cause!

We are stronger together and our voices deserve to be heard. Please join UOAA and other national stakeholders in our advocacy efforts to keep ostomy and urological supplies out of competitive bidding. Check out our Action Center to sign a petition and  also learn more about the efforts to declare Ostomy Awareness Day in all 50 states!

To keep up-to-date on Advocacy efforts all year long, join UOAA’s Advocacy Network. To be connected to future events and resources and show our power in numbers, become a national member of UOAA.

Everyone with an ostomy is different and so is how you choose to celebrate or educate on this day. Check out all our suggestions on how to make an impact on this Ostomy Awareness Day and beyond. One thing is certain, we are One Community that is Stronger Together!

September 17, 2026
https://www.ostomy.org/wp-content/uploads/2026/07/OAD-Updated-V6-1.png 1800 1800 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2026-09-17 11:43:282026-09-17 13:58:30A Community of Ostomy Awareness

The Adventure of a Lifetime: Lessons from Cycling Across Europe After Ostomy Surgery

Colostomy, Digital Sponsor, Exercise/Sports, IBD, Ileostomy, Ostomy News, Ostomy Tips, Patient Stories, Travel, Young Adult

By Axel Keller

This morning, I asked a woman to take my picture. Afterward, she looked at my bicycle, loaded with bags, and asked where I was headed. “Portugal,” I replied. We were standing in Copenhagen, Denmark, nearly 3,000 miles from my destination and almost 2,000 miles from where I had started 38 days earlier at the northern tip of Norway. Her jaw dropped. “Wow,” she said. “That’s the adventure of a lifetime.” I smiled, because little did she know, this wasn’t the adventure of a lifetime. That adventure had already happened. It began years earlier when I was diagnosed with ulcerative colitis and continued through countless hospital visits, medications, and uncertainty before culminating in the removal of my colon in December 2025 at just 22 years old.

The bike ride is only one part of this journey. Since surgery, I’ve learned more than I ever expected about living with an ostomy. Today, I’m partnering with Coloplast to answer a few questions about life with an ostomy and share some of the lessons I’ve picked up along the way.

What would surprise a new ostomate most about your life today with an ostomy?

If there’s one thing that would surprise a new ostomate, it’s how ordinary my ostomy has become. Before leaving for Europe, I imagined it would be the focus of every day. I worried about changing my bag in remote places, carrying enough supplies across multiple countries, finding clean places to do bag changes, and what would happen if something went wrong hundreds of miles from the nearest hospital.

Instead, my ostomy has become just another part of my routine. I change my bag, pack my supplies, and get back on my bike. Some mornings I wake up thinking about the weather, how many miles I want to ride, or where I’ll find food that evening. Most days, my ostomy isn’t the first thing on my mind anymore.

That’s probably the biggest surprise of this entire journey. Cycling across Europe isn’t possible because I ignore my ostomy, but rather because I’ve learned to live with it. What once felt overwhelming has simply become another part of preparing for the day, no different than filling my water bottles or checking the air in my tires.

How are you managing your ostomy as you cycle across Europe?

Before leaving for Europe, managing my ostomy was one of my biggest concerns. I spent months planning every detail because I wanted to eliminate as many unknowns as possible. Looking back now, it’s funny how much time I spent worrying about something that has become one of the easiest parts of my daily routine.

When it came to supplies, my philosophy was simple: always bring more than you think you’ll need. I packed about 25% more supplies than I expected to use throughout the trip because accidents happen, and it’s always better to have extras than to find yourself without what you need. I ordered everything well in advance of my flight to make sure it arrived before I left, and because I had four flights to reach the start of my journey in northern Norway, I carried all of my ostomy supplies with me in a separate medical bag. If my checked luggage was delayed or lost, I knew I would still have everything I needed.

Once I was on the bike, I never kept all of my supplies in one place. Most of them stay in one pannier, but I always keep a few complete bag changes spread throughout my other bags. That way, if one bag gets damaged, wet, or lost, I still have backup supplies within reach. It’s a simple habit that has given me a lot of peace of mind.

Bag changes have also become much easier than I expected. My Coloplast appliance typically lasts four to five days, so sometimes I’ll change it during a rest day at a hotel or cabin, just as I would at home. Other times, I’m deep in the mountains or camped in the middle of the woods. Before leaving on this trip, I practiced changing my bag while sitting on my bed, knowing that it would be similar to changing it inside my tent. By the time I found myself doing my first bag change on the road, it felt familiar because I had already practiced the process.

For disposal, I carry small dog waste bags with me. After a bag change, I seal everything inside one of those bags and store it in a separate place on my bike until I reach a proper trash bin. It’s a simple system, but it works well and helps me leave every campsite exactly as I found it.

The biggest lesson I’ve learned is that confidence comes from preparation. I didn’t eliminate every possible problem before leaving, I simply prepared well enough that when something unexpected happened, I knew I could handle it. That mindset has carried me through thousands of miles across Europe, and it’s one I’ll take with me long after this ride is over.

What has this journey taught you about yourself and life with an ostomy?

More than anything, this journey has changed the way I think about my ostomy. When I first had surgery, it felt like everything revolved around it. Every decision I made, every place I went, and everything I planned was influenced by this new part of my life. It was impossible not to think about because everything was still so new.

Now, it’s simply part of who I am.

There are days on this trip when I spend far more time thinking about the weather, where I’ll sleep that night, or how many miles I want to ride than I do about my ostomy. I still take care of it every day, but it no longer defines my day. That shift didn’t happen overnight. It happened through repetition, preparation, and proving to myself, one experience at a time, that I was capable of far more than I believed after surgery.

This journey has also changed the way I think about myself. Before leaving, I wanted to prove that I could ride across Europe with an ostomy. Somewhere along the way, I realized I didn’t have anything left to prove. My ostomy wasn’t holding me back anymore. It had simply become another part of my routine, just like packing my bike or setting up my tent.

The greatest lesson this trip has given me is that confidence doesn’t come from having all the answers. It comes from showing up, facing the unknown, and realizing you’re capable of handling more than you ever imagined. My ostomy may have changed the way I live, but it hasn’t changed the size of the life I’m able to live.

What would you tell someone who’s worried their ostomy will hold them back from traveling, exercising, or living the life they want?

If you’re reading this while recovering from surgery, wondering if you’ll ever travel, exercise, or chase the dreams you had before your ostomy, I’d first tell you that those feelings are completely normal. I remember lying in a hospital bed wondering many of the same things. At the time, riding a bicycle across Europe wasn’t even on my mind. I was simply hoping to feel healthy again.

Recovery takes time. There isn’t a moment where everything suddenly feels normal again. Instead, life slowly begins to open back up. The first walk turns into a hike. The first bike ride turns into a longer ride. Before you know it, you’re doing things that once felt impossible.

Don’t feel like you have to prove anything to anyone. Your goal doesn’t have to be riding across Europe. Maybe it’s walking around the block, going out to dinner without worrying about your ostomy, returning to your favorite hobby, or taking your first trip after surgery. Every milestone matters because every milestone reminds you that your life is moving forward.

If this journey has taught me anything, it’s that an ostomy doesn’t have to make your world smaller. It may change the way you prepare, the things you pack, or the routines you build, but it doesn’t have to change your dreams. Six months ago, I was recovering from surgery. Today, I’m writing this from a campsite in Denmark.

If I can leave you with one thought, it’s this: be patient with yourself. Give yourself time to heal, celebrate the small victories, and don’t let fear decide what your future looks like. You may be surprised by just how much life is still waiting for you on the other side of recovery.

 

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.

Axel is a Coloplast product user who received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare professional about which product might be right for you.

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

 

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.

September 9, 2026
https://www.ostomy.org/wp-content/uploads/2026/09/Axel-Keller_blog.jpg 1404 2000 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2026-09-09 09:10:082026-09-09 09:10:08The Adventure of a Lifetime: Lessons from Cycling Across Europe After Ostomy Surgery

Using the Power of UOAA’s Ostomy and Continent Diversion Patient Bill of Rights

Advocacy, Caregivers, Healthcare, Ostomy News, Ostomy Nurse, Support Resources

A WOC Nurse Team’s Journey to Expand and Improve Ostomy Care

By Joanna Burgess-Stocks, BSN, RN, CWOCN, UOAA Advocacy Committee Co-Chair

When organizational changes threatened access to specialized outpatient ostomy care, a team of certified Wound Ostomy and Continence (WOC) nurses at Indiana University Health turned to an important advocacy tool: UOAA’s Ostomy and Continent Diversion Patient Bill of Rights (PBOR). What followed was a successful effort to preserve and expand ostomy services for patients across the continuum of care.

Meet the WOC nurses who used the PBOR exactly as intended; to educate and outline optimal standards of ostomy care to facility leadership and to use it as a catalyst for change and improved patient care. Read their amazing journey of courage, fierce discipline and what drove their passion to create change.

 Discovering the Power of the PBOR

For May Ishikawa, MSN, FNP-C, CWON and Bethany Feeney, MSN, APRN, AGPCNP-BC, CWOCN-AP WOC nurse champions at Indiana University Health, the PBOR became much more than a document, it became a catalyst for advocacy, program growth, and improved access to specialized ostomy care. May states “It completely changed how I practiced when I transitioned from inpatient to outpatient care.”

May Ishikawa was introduced to UOAA resources by a fellow CWOCN who regularly shared patient education materials, including the New Ostomy Patient Guide and Eating with an Ostomy. As she explored additional resources, she discovered the PBOR and quickly recognized its value as a guide for lifelong ostomy care. These clinicians shared copies with patients, and it became central to their patient education and empowerment efforts.

It also provided a needed framework for encouraging annual ostomy checkups and empowering patients to seek support as needed. May states “maintaining a connection with a certified ostomy nurse through the entire ostomy journey is a basic right.”

This simple yet powerful document would help shape a much larger journey, one that transformed advocacy into action.

Building on a Strong Foundation

IU Health already had many elements of the standards of the PBOR in place. Building a strong collaboration between inpatient and outpatient WOC teams ensured that patients left the hospital with scheduled follow-up appointments, creating a seamless transition from surgery to recovery. Their comprehensive approach to outpatient care included the following assessments:

  • Pouching system effectiveness
  • Peristomal skin health
  • Patient confidence and self-care skills
  • Supply management needs
  • Overall adaptation to life with an ostomy

A Pivotal Moment

The ostomy clinic, originally located within an outpatient wound clinic under the hospital’s rehabilitation division, experienced steady growth. However, during an organizational review, leadership proposed shifting the outpatient space to focus exclusively on wound care, raising concerns about the future of dedicated ostomy services.

Rather than viewing this as a setback, May and Bethany saw an opportunity to advocate for their patients. May states “We utilized this pivotal moment to reinforce the core principles of the PBOR, reminding our community and our organization of the value of direct, unimpeded access to certified ostomy nurses.”  Their efforts helped demonstrate that ostomy care is an essential part of quality patient care before surgery, after surgery, and throughout a patient’s lifetime.

Building the Case for Change

To support their case, the team developed a meticulous business plan that combined financial and operational data, a detailed appendix of specialized billing codes, and clinic outcomes to demonstrate the value of specialized ostomy care. Their Advanced Practice Provider (APP) Manager became a key advocate and partner in the effort, helping present the proposal to senior leadership.

“It was important to track our department’s own internal data, May explained, “By presenting objective metrics that clearly measured the clinical impact certified ostomy nurses made on every patient we saw, we were able to build an undeniable case.”

Patient feedback and testimonials were equally compelling, illustrating how specialized ostomy care helped individuals adapt, regain confidence, and improve their quality of life. Together, the data and patient feedback convinced leadership of the program’s value. Ultimately, the clinic relocated under the surgical service line, preserving patient access to certified ostomy nurses and strengthening its connection to surgical care.

Why This Effort Worked

The success of the initiative came from changing perspectives. Rather than presenting specialized ostomy care as an additional service, the team reframed it as a fundamental patient right. By combining clinical data, patient stories, interdisciplinary collaboration, and the principles of the PBOR, they demonstrated that access to certified ostomy nurses is not a luxury, it is an essential component of quality healthcare.

Closing the Preoperative Education Gap

For May and Bethany, one important opportunity remained: expanding access to comprehensive preoperative education.

Patient feedback and tracking regarding the provision of pre-operative services at the clinic had consistently demonstrated the value of preoperative counseling. Patients who received education before surgery reported feeling more prepared and experienced smoother transitions after surgery. Those who had not received preoperative support often expressed a desire that such services had been available to them.

“When patients understand their rights and expectations, they become stronger advocates for themselves and help drive improvements throughout the healthcare system.”

Today, under its new surgical-home structure, the clinic was ideally positioned to expand services and bring the PBOR’s vision to life. Guided by its principles, the team strengthened preoperative counseling and highlighted the critical role education plays in helping patients enter surgery informed, empowered, and confident. Their program includes:

  • Procedure-specific education
  • Stoma siting with active patient participation
  • Expectations for recovery
  • Output management
  • Hands-on pouching instruction
  • Skin care and wafer preparation
  • Nutrition and hydration guidance
  • Discussions about intimacy and lifestyle concerns
  • UOAA educational resources and manufacturer starter kits

Lessons for Other Organizations

For facilities interested in implementing the PBOR, May and Bethany recommend:

  1. Read the PBOR and the accompanying White Paper thoroughly.
  2. Conduct a gap analysis comparing current practices to PBOR standards.
  3. Identify opportunities to improve patient access throughout the continuum of care.
  4. Track meaningful clinical metrics, including readmissions and patient satisfaction.
  5. Pair patient outcomes with operational and financial data to build a compelling case for leadership.
  6. Educate stakeholders about the value that the PBOR brings to patients and the healthcare organization.

A Call to Action; Expanding Reach of the PBOR!

For May and Bethany and their colleagues, the PBOR is a powerful advocacy tool, but its impact could be even greater through broader awareness among healthcare organizations, professional societies, educators, and patient advocacy groups.

Bethany emphasizes the importance of introducing patients and caregivers to the PBOR early in their care journey. “When patients understand their rights and expectations, they become stronger advocates for themselves and help drive improvements throughout the healthcare system.”

The experience at Indiana University Health demonstrates what can happen when evidence-based practice, advocacy, and patient-centered care come together. Guided by the PBOR, May and Bethany and their team transformed a challenge into an opportunity to strengthen services and expand access for ostomy patients.

As May notes, “Ostomy care is basic essential healthcare that patients deserve, not just before and immediately after surgery, but throughout their entire lifetime journey.”

August 11, 2026
https://www.ostomy.org/wp-content/uploads/2026/08/PBOR-Advocacy-Blog.jpg 1459 2000 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2026-08-11 16:04:462026-08-12 08:45:59Using the Power of UOAA’s Ostomy and Continent Diversion Patient Bill of Rights

UOAA Supports Colorectal Cancer Survivors

Advocacy, Colorectal Cancer, Colostomy, Ileostomy, Ostomy Basics, Ostomy News, ostomy reversals, Support Resources

By Cheryl Ory, UOAA President

While advances in cancer treatments rise the news on colorectal cancer has been alarming. Colorectal Cancer is the 2nd leading cause of cancer death in the U.S. and the number one cancer killer of people under the age of 50 according to the American Cancer Society.

The deaths this year of the beloved actors James Van Der Beek and Catherine O’Hara have brought more awareness to colorectal cancer. Hopefully the spotlight during this National Colorectal Cancer Awareness Month continues to encourage more people to be screened. UOAA stands alongside partner organizations like Fight Colorectal Cancer to push lawmakers into giving more funding and attention to what is a colorectal cancer crisis.

United Ostomy Associations of America (UOAA) has been supporting cancer survivors and others living with an ostomy for over twenty years so that they can have the best quality of life possible. If your cancer requires life savings ostomy surgery, remember – you are not alone. UOAA estimates that between 725,000 to 1 million people in the U.S. of all ages and backgrounds are living with an ostomy, and over 100,000 ostomy surgeries are performed each year.

UOAA President Cheryl Ory at the Fight Colorectal Cancer United in Blue Rally in Washington, D.C. in 2024.

In 2008 I was diagnosed with Stage 3b colorectal cancer. I was told the cancer had been developing for at least 10 years or more, most likely when I was in my early 30’s. There was a polyp, if it had been removed at an earlier date the cancer would not have developed. After radiation, chemo, surgery, and more chemo I am now a colorectal cancer survivor with a permanent colostomy, an ostomy that has saved mine and others lives from not only cancer, but other debilitating diseases.

If you are a person still at risk, like those with IBD, let me urge you to get screened. Screening can result in any colorectal cancers being found earlier when they are easier to treat.

Every individual person’s disease treatment is unique but ostomy surgery for colorectal cancer may mean a temporary ostomy, ileostomy (from the small intestine) or colostomy (large intestine). This may be required to give a portion of the bowel a chance to rest and heal. When healing has occurred, the colostomy can often be reversed and normal bowel function restored.  It’s important to know that not everyone with an ostomy will be a candidate for a reversal operation. A permanent colostomy may be required when a disease affects the end part of the colon or rectum.

We have two guides written from a patient’s perspective, Living with a Colostomy and Living with an Ileostomy, to help you learn as much as possible before and after you have this life changing surgery.

It’s especially important to connect with one of hundreds of  UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Even online peer support and preparation can put you on the path to success in what may be a challenging time both emotionally and physically.  Ask if the hospital has a certified ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

You may feel too overwhelmed as you are discharged at the hospital to fully understand ostomy pouching systems and accessories and lifestyle considerations.

As you recover, if you have a descending or sigmoid colostomy you may want to ask your doctor or ostomy nurse if you are a candidate for colostomy irrigation. I utilize colostomy irrigation, which is similar to an enema, as a way to have control over my output schedule that fits my lifestyle. UOAA seeks to raise more awareness for the practice and encourages medical professionals to discuss this treatment option with patients who may benefit.

If you have a  medical question contact your doctor or ostomy nurse. If you need help finding an ostomy nurse use or our outpatient ostomy clinic finder or make plans online with a virtual ostomy clinic. If you have a quality of life question-UOAA resources here at ostomy.org and peers at UOAA Affiliated Support Groups likely have the answers.

It’s important to learn the facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. After some trial and error, you may also eat most of the foods you have been able to eat in the past. Education is key to battling misinformation.

Unfortunately misinformation and stigmas surrounding both ostomy surgery and colorectal cancer affect the number of people getting screened or getting the medical treatment they need.  Let’s work together to educate, advocate and support survivors.

 

Cheryl Ory is a colorectal cancer survivor who received a permanent colostomy in 2008. Cheryl is a Registered Nurse who has had a passion for volunteering with the ostomy community ever since and first joined UOAA’s Board of Directors in 2015. She now holds the position of President.

 

 

 

March 2, 2026
https://www.ostomy.org/wp-content/uploads/2026/03/colorectal-cancer-survivors.png 788 940 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2026-03-02 13:11:302026-03-10 23:26:39UOAA Supports Colorectal Cancer Survivors

Squid Game: The Challenge Contestant Embraces Life with an Ostomy

IBD, Ileostomy, Ostomy News, Patient Stories

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.

November 5, 2025
https://www.ostomy.org/wp-content/uploads/2025/11/Kathy-Kelly-Squid-game-1.jpeg 565 640 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2025-11-05 10:02:232025-11-05 10:05:12Squid Game: The Challenge Contestant Embraces Life with an Ostomy

MY JOURNEY TO BECOMING A CERTIFIED OSTOMY NURSE

Advocacy, Ostomy News, Ostomy Nurse, Patient Stories

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

October 20, 2025
https://www.ostomy.org/wp-content/uploads/2025/10/Erin-Young-nurse-scholarshop-1.jpg 1517 1000 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2025-10-20 12:36:332025-10-22 10:10:18MY JOURNEY TO BECOMING A CERTIFIED OSTOMY NURSE

UOAA Advocates Bring Patient Voices to Capitol Hill

Advocacy, Ostomy News

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!

October 14, 2025
https://www.ostomy.org/wp-content/uploads/2025/10/Group-photo-FLTXLA-Capitol-scaled.jpg 2560 1920 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2025-10-14 16:51:292025-10-24 16:20:43UOAA Advocates Bring Patient Voices to Capitol Hill

Celebrate World Ostomy Day with UOAA!

Advocacy, Colostomy, Events, Ileostomy, Ostomy 5k, Ostomy Awareness, Ostomy News, Urostomy

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/

September 19, 2025
https://www.ostomy.org/wp-content/uploads/2025/09/web_World-Ostomy-Day-logo-2025-white.png 554 576 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2025-09-19 10:28:162025-09-19 12:54:59Celebrate World Ostomy Day with UOAA!

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

Advocacy, Ostomy Awareness, Ostomy News, Patient Stories

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/

September 15, 2025
https://www.ostomy.org/wp-content/uploads/2025/09/Keely-photo-1-scaled.jpeg 2560 2202 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2025-09-15 12:57:242025-09-15 12:57:24World Ostomy Day Champion Keely Cat-Wells is a Leader in Breaking Down Barriers

UOAA is Here for Bladder Cancer Survivors

Continent Diversions, Ostomy News, Urostomy

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.

July 13, 2025
https://www.ostomy.org/wp-content/uploads/2023/05/Bladder-cancer-blog.png 808 1149 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2025-07-13 14:15:282025-07-28 16:07:18UOAA is Here for Bladder Cancer Survivors

Meet Christina & Molly – Two Friends, One Mission

Emotional Health, Exercise/Sports, IBD, Ileostomy, Ostomy News, Ostomy Tips, Ostomy Videos, Patient Stories

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. 

June 5, 2025
https://www.ostomy.org/wp-content/uploads/2025/06/Molly-and-Christina-friends-1.jpg 1859 1788 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2025-06-05 12:34:492025-06-05 12:34:49Meet Christina & Molly – Two Friends, One Mission

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

Colostomy, Exercise/Sports, IBD, Ileostomy, Ostomy Awareness, Ostomy News, Patient Stories, Young Adult

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.

May 19, 2025
https://www.ostomy.org/wp-content/uploads/2025/05/Rob-Nunnery-pickleball-01.jpg 1397 2200 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2025-05-19 14:53:092025-06-09 11:08:51From Pain to Purpose: How a Professional Pickleball Player Reclaimed His Life After Colostomy Surgery

73 Years with an Ostomy

Ileostomy, Ostomy News, Patient Stories, Personal, UOAA History

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. 

 

May 8, 2025
https://www.ostomy.org/wp-content/uploads/2025/05/Ruth-Fawley-1.jpg 1575 1200 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2025-05-08 16:34:112025-05-08 16:34:1173 Years with an Ostomy

Celebrating UOAA Volunteers

Advocacy, Events, Ostomy News, Support Group News, UOAA History, UOAA Volunteers

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!

May 5, 2025
https://www.ostomy.org/wp-content/uploads/2025/05/UOAA-BOD-1-scaled.jpg 2560 2248 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2025-05-05 14:58:432025-05-05 14:58:43Celebrating UOAA Volunteers
Page 1 of 7123›»

Our Categories

Advocacy (82) Body Image (3) Caregivers (21) Colorectal Cancer (19) Colostomy (142) Continent Diversions (8) Digital Sponsor (80) Disaster Preparation (4) Emotional Health (64) Events (33) Exercise/Sports (49) Fashion/Clothing (11) Healthcare (23) IBD (57) Ileostomy (191) J-Pouch (8) jejunostomy (8) Membership (3) Nutrition (19) Ostomy 5k (21) Ostomy 5k (17) Ostomy Awareness (56) Ostomy Basics (56) Ostomy News (99) Ostomy Nurse (15) ostomy reversals (13) Ostomy Supplies (3) Ostomy Tips (96) Ostomy Videos (4) Patient Stories (104) Pediatric Ostomy (5) Personal (69) Sexuality (12) Short Bowel Syndrome (17) Skin Care (10) Social Life (5) Support Group News (13) Support Resources (16) Teens (4) Travel (12) UOAA Conference (18) UOAA History (3) UOAA Volunteers (5) Urostomy (114) Young Adult (10)

Support Us:

Your Donation Funds UOAA Educational Programs:

DONATE TODAY
SUSTAINING GIFT
BECOME A MEMBER
UOAA E-NEWS SIGN UP
Get updates on events, national advocacy and important topics in the ostomy and continent diversion community.

Contact Us


United Ostomy Associations of America
P.O. Box 2293
Biddeford, ME 04005-2293

Virtual Ostomy Clinic

Contact UOAA

Donate Your Supplies

Call us toll-free at: 1-800-826-0826.
Our Information Line hours are Monday-Friday, 9am to 3pm EST. If you have an emergency, please dial 911 or contact your local medical professional.

Please understand that UOAA is a private, nonprofit, advocacy and informational organization. We are not a medical facility and we do not have medical or legal professionals on staff. Therefore, UOAA does not provide Medical, Mental Health, Insurance or Legal Advice. Visit UOAA Virtual Ostomy Clinic provided by The Wound Company for non-emergency, virtual ostomy support.

Privacy Policy

Get Involved

UOAA is the leading organization proactively advocating on behalf of the ostomy community. Recognizing that we are always stronger together, we encourage everyone to get involved by joining our Advocacy Network. We’ve also created several Advocacy Tools and Resources to help you successfully advocate on behalf of the ostomy community to ensure every ostomate receives quality care.

UOAA Run for Resilience Logo

UOAA does not and shall not discriminate on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, or military status, in any of its activities or operations.

Digital Health Award
© 2005-2026, UOAA. All Rights Reserved l Design by Tap House Media
  • Link to Facebook
  • Link to X
  • Link to Pinterest
  • Link to LinkedIn
  • Link to Youtube
  • Link to Mail
  • Link to Instagram
Scroll to top Scroll to top Scroll to top