This Pop-up Ostomy Clinic is A National Destination

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By Ed Pfueller, UOAA Communications and Outreach Manager

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Early Years of UOAA Reflections on a 20th Anniversary

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By Charlie Grotevant

As someone who underwent successful ileostomy surgery in 1983 followed by immediate membership in the Kankakee, Illinois chapter of United Ostomy Associations (UOA), my history is long. My wife Joyce and I attended several UOA National Conferences during the 1990s and 2000s, making friends from around the country.

In 2014, I began a Memoir entitled The Healthy Years chronicling my life beginning with 1983.  It consists of 162 pages with nearly 60,000 words and photos. There is an abundance of information regarding UOAA, taken from emails, writeups in Affiliated Support Group (ASG) newsletters, notes written shortly following many of the events, etc. This narrative is gleaned from my Memoirs.

Like our symbol, the Phoenix, UOAA rises from the Ashes of UOA

During the UOA years Ken and Linda Aukett served, during different intervals, as President of UOA, including a term for Ken as President of the International Ostomy Association.

Linda led advocacy efforts with elected and appointed government officials and interacted with other health-related support and research organizations.

My visibility with UOA became nationwide when I was the recipient of the 18th annual Great Comebacks Award in 2002. At that time the program was financially sponsored by Convatec and co-sponsored by Crohn’s & Colitis Foundation. UOAA became an additional co-sponsor in 2006.

During March of 2005, it became apparent UOA was planning to dissolve due to financial shortcomings. Contributing to this decision was the withdrawal of the Canadian chapters of UOA to become the Ostomy Canada national organization several years prior. UOA announced it would cease operations on September 30, 2005 after 43 years of providing essential services.

UOAA C0-Founder Linda Aukett at the Capitol in Washington, D.C. while serving as President of DDNC (Digestive Diseases National Coalition).

Ken and Linda Aukett were determined that a national ostomy support organization was essential for the continued support and education of approximately 750,000 Americans, their caregivers, and patients considering or needing ostomy surgery. Pursuing advocacy issues, as had been done with UOA, was equally important.

The Auketts began creating a Steering Committee to establish the successor organization.  It was to become an organization of individual Affiliated Support Groups (ASGs) operating under the umbrella of the national organization. ASGs would collect dues from individual members to maintain their respective local groups and would send ASG dues to UOAA.

UOA had served as a national organization with several hundred Chapters throughout the country. UOA published the Ostomy Quarterly magazine and sponsored a Youth Rally camp as well many other functions on the national level.

Mary Jane Wolfe had a lead role in setting up the new organization, helping come up with the name United Ostomy Associations of America (UOAA), but did not want to be on the Steering Committee. She recommended me to Ken who put the “hard sell” on this busy Illinois farmer to be the 7th member. Mary Jane was also a major force in the prior UOA Rally, leading by example from her wheelchair.

Charlie and Joyce, center, with Mary Jane Wolfe, left, and NFL legend and ostomy advocate Rolf Benirschke, right, at a National Conference.

The Steering Committee consisted of Ken as President, Julielynn Gibbons as Vice President, Ginnie Kasten as Secretary, Dave Rudzin as Treasurer, Ron Titlebaum and myself as Directors. Linda Aukett was officially recognized as the Advocacy Chair. George Salamy was named as Chair of the Trustees.

A major role incorporating UOAA, securing 50 (c3) tax-exempt status, and assisting with writing the Constitution of UOAA was filled by Philadelphia lawyer, Sheldon Sokol, working pro bono, for whom we are forever grateful.

Bob Baumel, who had served as webmaster for UOA, became and expanded the webmaster duties with UOAA. Thank you, Bob for all you have done and continue to do.

Ian Settlemire, who had served as Editor of Ostomy Quarterly, created The Phoenix magazine, the official publication of the UOAA. A free copy was sent to each former Ostomy Quarterly subscriber in December of 2005. Subscription fees to The Phoenix have been an important source of revenue for the UOAA for the past 20 years.

The final UOA National Conference was held August 3rd-6th in Anaheim, California with UOAA given time to tell of the new organization and respond to questions and concerns.

The Steering Committee members were given assignments to meet with vendors, UOA officials, medical professionals, and health service providers. In addition to the explanatory sessions, I was to meet with Dave Johnson, VP of Convatec, telling the goals of UOAA and requesting financial support. I was well acquainted with Dave because of the Great Comebacks Program and subsequent publicity events. He pledged a significant monetary commitment to UOAA.

Outhouse to White House

As a farm boy, who was 9 ½ years old before we had running water and indoor plumbing, I have truthfully gone from the outhouse to the White House. The White House adventure was arranged by Convatec at the time of the 2007 Great Comebacks National Awards in Washington, DC, with separate Congressional lobbying calls on the agenda, carried out the next day.

Charlie with President George W. Bush at the White House in 2007.

A White House after hours visit was hosted by Marvin Bush, younger brother of President George W. Bush.  Marvin is a member of the 5P Club, People who Poop or Pee in a Plastic Pouch, a survivor of IBD.

Marvin needed to leave prior to the arranged time for the mini bus to take us back to the hotel.  Then the President arrived on the scene, and this group of 13 had an interesting 25 minutes of non-political chit-chat.

Even though Convatec has undergone ownership changes, I remain forever grateful for all they have done for us and other recipients of the Great Comebacks Award.

Early Years of UOAA

On October 1st, 2005, UOAA became an official legal entity and the Steering Committee became the initial Membership Board of Directors, a bare-bones organization.  In later years after multiple staff positions were created, the designation MBoD became Board of Directors.

Linda arranged for the UOA toll-free number to be transferred to UOAA, with each Board member to take the calls one day a week. Lots of calls on some of my assigned days into an answering machine. I responded as soon as possible. Some wanted genuine information and encouragement, but a few wanted a shoulder to cry on or complain.

Coco, the Colossal Colon at the 2007 UOAA National Conference. It had been previously featured on The Today Show and UOAA volunteers appeared with it on an episode of Shipping Wars.

I was also happy to server as Liaison to Youth Rally, which became separate nonprofit organization.  I became a volunteer counselor in 2006 and continued as a counselor through 2012 when my hearing was deteriorating badly and I considered myself a liability rather than an asset to the Rally. Those weeklong camps at various college campuses were the most rewarding and most tiring weeks of those years. I continue to support Youth Rally financially.

2006 was a busy year for UOAA and others on the MBoD. Early that year, Joan McGorry was hired as Office Administrator to work out of her home.  This eliminated the weekly telephone response sessions on the part of those of us on the MBoD.

In February, I received a call from a WOC nurse in southern Illinois telling of a young lady being denied insurance coverage for ostomy supplies.  I consulted Linda Aukett regarding this issue and received guidance.

A few weeks later, I was invited by Convatec to speak at a national sales conference in New Jersey. At the sales conference, I met with the Convatec Director of Health Economics and Reimbursement and a separate healthcare consultant to discuss ways to proceed with the Illinois reimbursement issue.

A month later, following the testimony of the aggrieved ostomy patient to the Illinois Insurance Committee, I presented testimony and supporting evidence. An insurance lobbyist in his lawyer language quickly denied the need for mandatory coverage.

The Chair of the Committee appointed a sub-committee to study the issue. Net result, SB 2444, an amendment to the Illinois Insurance Code, passed requiring coverage for ostomy supplies, although allowing deductibles to occur. A victory for UOAA!

Julielynn Gibbons, Bob Baker and Charlie as UOAA reps at the 2007 GYGIG 3-day bike ride.

Also in 2006, UOAA became a co-sponsor and beneficiary of Get Your Guts In Gear (GYGIG), a 3-day bike ride fundraiser for UOAA, Crohn’s & Colitis Foundation, The Colon Club, and other organizations focused on IBD, colorectal cancer, and the needs of ostomy patients. This was the third year of the GYGIG event. In each of the first two years I rode, UOAA received $60,000.

In 2007, UOAA had additions with Mary Jane Wolfe, Kristin Knipp, Lynne Kramer and LeeAnn Barcus joining the MBoD.

A Support Group Ambassador Program was also initiated with the goal of surfacing volunteers to act throughout their respective states and regions in efforts to gain more ASGs and increase membership.

On a personal level, because of three winter months on the Gulf Coast of Florida, I visited and spoke to as many as a dozen ostomy support groups, facilitating changes in leadership and bringing one major hospital into UOAA. I did the same in Illinois.

2008 brought Bob Baker onto the UOAA MBoD. I was acquainted with Bob because of his Regional Great Comebacks Award. We also shared a GYGIG ride in 2007. Bob has now rejoined the UOAA Board.

One of the basic foundations of UOAA is the need for constant and competent advocacy with elected and appointed officials.

Susan Burns also joined the MBoD that year followed by Jim Bob Murray the next year. Millie Parker then came onto MBoD in another year or two as did Justin Blum. Many more followed.

At the end of 2008, I exited the MBoD because the hearing deficit was reducing my effectiveness. I continued as UOAA Ambassador and remain willing to call on ASGs and individuals when asked. I also continue leading the Kankakee ASG.

As I conclude this narrative, I praise Ken and Linda Aukett for all they have done and what Ken continues to do with years of total involvement in the greater ostomy community. They became the heart and soul of UOA, UOAA, and the International Ostomy Association, traveling to every continent except Antarctica.

Linda also served as the UOAA representative on the Digestive Diseases National Coalition (DDNC) Board and was later Chaired that organization, linking 23 national organizations together in advocating for common interests.

Evidence of Linda’s advocacy efforts was shown in 2011 when Ken and I accompanied a former US Senate staffer who was rudely examined by TSA personnel as he prepared to board a flight.

A few years prior, UOAA led the effort in getting the Blue Notification Card accepted by TSA as proper notification of special medical conditions and the need for the screening to be done in a discreet manner. Even so, continued insufficient training of some TSA personnel continued to result in occasional major mistreatments.

2013 UOAA National Conference in Jacksonville, FL.

A meeting, arranged by the insider using his personal friendship with the President of the Senate, occurred in the TSA office. TSA Director John Pistole, TSA Legal Counsel Jackson, and the Director of Operations were with us for an hour to meet and discuss the problems still arising during TSA screenings.

During our self-introductions, when Ken identified himself, the Legal Counsel asked of Linda. Jackson, quickly stated to the effect that ‘I have had many conversations with Linda and we continue to work on solutions for the problems at hand. Yes, the name Aukett brought instant recognition.

One of the greatest losses to our ostomy community was the passing of Linda in 2013 due to cancer. Her knowledge and abilities, whether with Youth Rally, with UOA and UOAA functions, and especially with advocacy efforts on Capitol Hill where she was known by elected and appointed officials is beyond comparison in my opinion.

Thank you, Ken and Linda for your ‘over and above’ efforts throughout many years of helping others.

Be the Future

As for my thoughts for the future of UOAA. One of the basic foundations of UOAA is the need for constant and competent advocacy with elected and appointed officials. This is more so than ever before due to the political divisiveness threatening all aspects of everyone’s life. UOAA has a wonderful Advocacy Program with many ways to get involved.

With all the inaccurate information floating through all media, including websites, blogs, etc., it is critical for UOAA to be the voice of accuracy. This will require increased determination on the part of everyone associated with UOAA to be the voice on the local level as well as nationally. Yes, UOAA can go forward if enough concerned people become UOAA members and come forward to volunteer and assist in meeting the challenges before us.

I invite others to share historical UOAA memories and let me know if everything I have shared is accurate. We hope to see many of you in Orlando for the 2025 National Conference where we will take time to celebrate 20 Years of UOAA!

 

4 things everyone should know about ostomy bags

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

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

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

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

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

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

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

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

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

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

And that is anything but the worst.

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

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

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

Ostomies are for:

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

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

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

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

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

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

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

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

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

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

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

And those are qualities worth loving.

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

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

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

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

The truth about ostomy myths

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

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

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

 

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

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

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

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

 

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

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By Cheryl Ory, UOAA President and Conference Chair

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

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

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

A Program with Something for Everyone

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

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

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

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

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

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

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

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

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

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

Fun Social Events

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

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

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

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

Make it a Vacation with Family or Friends

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

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

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

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

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

Register Today!

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

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

My UOAA Story- Stanley Cooper

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Jeanine Gleba, UOAA Advocacy Manager

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

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

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

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

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

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

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

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

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

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

And for those looking for a peek into the future:

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

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

The Impact of Advocacy: Healing Yourself and Uplifting Others

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By Nicole Richards

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

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

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

The Power of Your Story

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

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

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

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

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

So, where are you in your healing journey?

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

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

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

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

Managing the Challenges of Pancaking

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

 

What is pancaking?

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

Why can pancaking be a problem?

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

Who is at risk for pancaking?

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

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

What can be done to decrease instances of pancaking?

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

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

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

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

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

 

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

Fall Into Ostomy Awareness

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

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

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

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

Virtual events to celebrate OAD

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

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

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

The Ostomy 5k- Not just for Runners

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

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

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

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

 

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

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

Celebrate with our Run for Resilience Sponsors

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

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

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

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

Other Gatherings Nationwide

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

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

Awareness Saves Lives: Celebrating Ostomy Awareness Day

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

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

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

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

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

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

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

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

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

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

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

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

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

PROUD ACCEPTANCE OF THE 2024 UOAA OSTOMY NURSE SCHOLARSHIP

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UOAA is excited to announce that the 2024 recipient of the Educational Award for Ostomy Nurse Certification is Jessica Biggs from Arkansas!

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

I am thrilled to have been awarded the 2024 UOAA Scholarship, which will support my journey towards becoming a certified ostomy nurse. As a Registered Nurse with four years of specialized experience caring for individuals with ostomies at Washington Regional Medical Center General Surgery Clinic since 2021, this scholarship represents not just an opportunity for me to advance my education, but also a step toward enhancing the quality of care for my patients.

I received my Associate of Science in Nursing at North Arkansas Community College in 2016 and recently graduated with my Bachelor of Science in Nursing (BSN) from Western Governors University in 2024. During my BSN program, I was honored to be awarded the Capstone Certificate of Excellence for my comprehensive healthcare change proposal, which included the development and initiation of an outpatient ostomy clinic at my current place of employment.

The journey from general nursing to specializing in ostomy care has been driven by a profound desire to fill a critical gap in healthcare services in Northwest Arkansas and to provide compassionate, expert care to a community that desperately needs it. Northwest Arkansas, with its dense population, currently lacks sufficient outpatient ostomy care services. This unmet need has driven me to work tirelessly towards the establishment of a dedicated ostomy clinic.

Throughout my career, I have had the privilege of working closely with patients navigating the complexities of life with an ostomy. These individuals face unique challenges, from managing their physical health to dealing with the emotional aspects of their condition. Ostomies, though medically necessary for many, can often lead to feelings of fear and confusion. As a nurse, my role extends beyond just providing medical assistance; I strive to be a source of emotional support and education, empowering my patients to regain their confidence and independence.

By becoming certified through the Wound, Ostomy, and Continence Nursing Certification Board (WOCNCB), I will be equipped with the specialized knowledge and skills necessary to provide expert care and education to my patients. UOAA is enabling me to pursue this further education and specialized training in ostomy nursing. This advanced knowledge is essential for providing patients with evidence-based gold standards of care that addresses both their physical and emotional needs. I’m excited to have been accepted into the WEB WOC ostomy single scope program and start in the 2024 Fall semester.

As I embark on this next chapter of my professional journey, I am deeply committed to making a lasting impact on the lives of individuals with ostomies. Every day, I witness the resilience and strength of my patients, and I am inspired by their stories. They remind me of the importance of compassion and understanding in nursing care. It is not just about treating a condition; it is about treating the whole person and supporting them through their unique challenges. I believe that every patient deserves access to high-quality, compassionate care, and I am dedicated to making this a reality for the ostomy community in Northwest Arkansas.

In conclusion, receiving the 2024 UOAA Educational Award for Ostomy Nurse Certification aligns seamlessly with my passion for enhancing patient care and advancing the field of ostomy nursing. Thank you to UOAA for believing in my vision and for investing in the future of ostomy care!

Congratulations, Jessica!

The next scholarship application will open, pending funding availability, in January 2025 and closes on June 30, 2025. 

If you’d like to help UOAA continue this in 2025, 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.

A Milestone for Ostomy Awareness

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 10 Years of the Run for Resilience Ostomy 5k

By Ed Pfueller, UOAA Communications and Outreach Manager

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

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

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

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

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

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

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

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

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

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

Lara DuPree and her mother Dani Osewalt.

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

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

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

A Legacy Across the U.S.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

From the Stage…to Ostomy Surgery…To the Big Screen

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Update March 2026

The featured ostomy inspired 8min short film, STUCK, has completed its successful film festival run. From Hollywood to NYC, the film is now available on YouTube for all to see!
Please like, comment, and share on YouTube and help spread awareness. 

Short Film Inspired by Ostomate 

Written by Raimo Strangis

My ostomy journey began back in 2004. I was in my early 20’s and the frontman of a rock band, called Cranney. We started gaining a little buzz in the Toronto rock scene, playing all the historic venues like El Mocambo, Lee’s Palace, and the Horseshoe Tavern. Things were going great. Then, I started feeling really sick, but I ignored it. Finally, I went to the doctor and was diagnosed with ulcerative colitis. I had never heard of it. At first it was manageable; some stomach cramping and urgent bathroom runs. Medication was working and Imodium was my best friend. Suddenly, my condition got much worse. The urgency, blood, and cramping would come on like an avalanche. I exhausted all the medication options, and nothing was working, except for steroids, which is not a longterm solution. I lost a lot of weight and would plan my routes knowing where the best public bathrooms were. Every time I entered a building, I immediately needed to know where the washrooms were. There were days when I wouldn’t leave my room, let alone my house. I canceled shows, stopped going out with my friends, and skipped family outings. This behaviour turned into depression and anxiety, eventually ending the band and my musical career. I felt like I lost my purpose, which led to some dark nights and even darker thoughts.

My doctors recommended ostomy surgery. I had never heard of that either. After doing some research and being young and naive, I said there’s no way I’m doing that. So, I suffered for ten long years. Finally, in 2014, in my 30’s, married and with two kids, I decided to have ostomy surgery. It was the best decision I’ve ever made. No more pain, suffering, or worrying about bathrooms. I was free to live my life again and I didn’t care what people thought.

It’s easy to look back now and say, I should have just had the surgery sooner, I could have kept playing music. But when you’re in the moment, faced with a life-altering surgery, the fear, shock, and hopelessness is blinding. With no examples or stories of people going through the same struggles, I felt alone. This is where I knew an important story needed to be told.

The film captures a pivotal moment in time. Rai, a musician who just had ostomy surgery, is isolating at home struggling to come to terms with his new reality.

In 2020, I wrote a book titled, With Little Means. In the book, I tell a story of an aspiring musician who gave up on his dreams after ostomy surgery. The book fell into the hands of actor/producer Micheal Pillarella. He was moved by the story and felt it had potential to make an inspiring film. Together, we began working on an early version of a script.

Then, we knew we needed a great director to bring our story to life. Dan Abramovici is an award-winning writer/director, with his films being featured in acclaimed film festivals around the world. Dan’s vision was not your typical PSA, but an honest, real, film festival worthy short film. Once Dan and fellow screenwriter Liam Gareau, took over the script writing duties, a compelling story began to unfold.

Next, we needed a film production company to put it all together, that was Stagg Forrest Films. With a combined passion for storytelling and a wealth of experience, Myrthin Stagg and Kate Forrest were committed to creating an engaging and thought-provoking film that would resonate with audiences worldwide.

Then, we needed a cast of talented actors. Once Michael committed to the lead role of Rai, and actress Karen Knox came onboard to play the eccentric bandmate Isla, we knew we had the right actors to deliver a compelling performance.

Finally, we felt it was important to have the support of an organization that shared our vision and belief in the cause. Being a member of an ostomy support group, Barrie branch, I knew who I needed to contact, Ostomy Canada Society. John Hartman, recently retired and former Executive Director of OCS, from our first conversation, felt a strong connection to the story and was excited to get involved. Thus, a short film was born, Stuck.

STUCK – Teaser from Dan Abramovici on Vimeo.

The film captures a pivotal moment in time. Rai, a musician who just had ostomy surgery, is isolating at home struggling to come to terms with his new reality. Haunted by his deepest fears, he’s given up on his music career. Enter Isla, his eccentric ex-bandmate. She’s there because she desperately needs him to play a show that night, but also because she cares. The conversation escalates, and Rai says things he wishes he hadn’t, pushing Isla away. He’s afraid to get back on stage. After a moment of reflection, Rai grabs his guitar and begins to play for the first time in a long time. Will he play the show that night? We don’t know. But at least he’s picked up the guitar and is playing music again.

The short film will have it’s world premiere in Hollywood, California at the historic Chinese Theater on Sunday June 23, 2024, at 2:45pm, as part of the Dances With Films festival. The film will be submitted to international film festivals around the world.

I hope by telling a story like this we can bring comfort to those who may be suffering as I did. I thought having ostomy surgery would ruin my life, but instead it gave me my life back. Please join us on this special day as we celebrate a film that features a character living with an ostomy.

 

Ostomy Advocate Makes a Splash in Commercial

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Advertising students at BYU put a spotlight on ostomy awareness in creative commercial. 

The students could focus on anything they wanted for a final advertising project at Brigham Young University in Utah, but they knew they wanted it to be meaningful. After spending days thinking about a direction for the project Art Director Jane Reese and Copywriter Nate Nielson made a connection that they both had family members with ostomies. “We didn’t know until we were much older because they were very private about it and it felt like some kind of “secret”. That’s when we came up with the idea of “uncovering” your story,” says Nielson of the ad they conceived with the brand Hanes in mind.

Jane Reese has had eight family members with a colostomy. “A lot of people do not know what they are and we wanted to spread awareness and help do whatever we could,” Reese said during a break in the filming.

“We wanted the ad to highlight the emotion that our family members felt and at the same time illustrate that it’s normal to have medical conditions and no one should feel embarrassed or shamed by them,” Nielson says.

When Nate Hadlock, who is a member of UOAA’s Patient Advisory Board learned about the project he jumped at the opportunity to be involved.

“Ostomies often change a lot about a person’s life and how they view themselves, so seeing a beautiful video like this, along with the overwhelmingly positive response to it, can give ostomates new courage and confidence,” Hadlock believes.

The beautifully produced film project features Hadlock and several other ostomates living life to the fullest. Hadlock is seen in the commercial diving and gliding through the water swimming while wearing a Stealthbelt cover over his ostomy pouch. The image itself is powerful because of the hesitancy some ostomates may experience because of misinformation about swimming with an ostomy.

“I am extremely grateful that I was able to be a part of this project. The actual film day of making the ad was so much fun! The students could not have been more professional or treated me better. It was a special moment in my life! ” Hadlock says.

Hanes-Uncover Your Story from jane reese on Vimeo.

Nielson credits getting Hadlock on board with encouraging other people to be featured in the project. We wanted to show people of all backgrounds, because these conditions, can affect anybody,” Nielson says.

A voiceover of the Maya Angelou Poem ‘One Human Family’ is featured in the ad and reminds us that we are “more alike than we are unalike.”

“Though we all have different marks, scars, and stories, underneath we are all human. Everyone deserves to be proud of who they are,” Reese said of the project on a post on LinkedIn.

Hadlock feels that the message of the ad itself and the project as a whole can really help with ostomy awareness. “Ostomates need to see that they belong in this world as much as anyone else. If I had seen this ad 14 years ago, when I received my ileostomy, it would have changed my entire outlook on ostomy life and what I was going through,” he says.

In a YouTube video Hadlock shares a special behind-the-scenes look at the filming and more reflections on the project in the context of the often negative portrayals of ostomies on TV and in popular culture.

“Ostomies often change a lot about a person’s life and how they view themselves, so seeing a beautiful video like this, along with the overwhelmingly positive response to it, can give ostomates new courage and confidence,” Hadlock believes.

I have already been contacted by multiple people about how this “ad” has legitimately helped them, or somebody they know! Hopefully, ostomates who see this will realize, even if only a little bit more, that they are beautiful, capable, worthy of love, and definitely not alone.”

Other students who worked on the film came away with a new understanding of the ostomy community.

“I had my eyes opened to a whole other world- a world that so many around me live in daily, but that I had no idea of its existence. I was able to meet amazing people who shared with us their journey with an ostomy. If you are struggling with shame, embarrassment or any other thing because of your ostomy, know this: you are SO strong and you are capable of anything you put your mind to! “ says director Taylor Steadman.

Though the company Hanes was not involved in this project the ad has the look and feel of a full-scale professional production and is a credit to the talents of the student team.

“We wanted the ad to highlight the emotion that our family members felt and at the same time illustrate that it’s normal to have medical conditions and no one should feel embarrassed or shamed by them,” Nielson says.

“I’m very grateful for the opportunity to work on such an important project, and I hope that my cinematic choices made in this commercial helped capture the experiences and feelings of these incredible individuals,” said Spencer Nelson, Director of Photography.

Hadlock feels that helping with this project was a chance to do something uniquely meaningful. “I spent decades not wanting to ask for help or talk about the medical side of my life with anyone. However, becoming more active in this community has taught me so much and truly changed my life. I have also seen the tangible and intangible ways that my own advocacy can help others.”

That’s why I’m grateful to be involved in advocacy efforts with UOAA and why I plan to be a part of many more projects like this video in the future,” says Hadlock.

How to Stay Hydrated from a Marathoner with an Ostomy

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Ileostomate and athlete Collin Jarvis shares his recommendations for staying hydrated when you’re physically active. 

My name is Collin and I had ileostomy surgery in 2014 when I was on the Cross Country and Track & Field teams at the University of California – Berkeley. Staying hydrated was always an important aspect of my athletic performance, but after I had surgery, it became even more critical for me to drink enough fluids. Why? Because having an ileostomy can meaningfully reduce the body’s ability to get hydrated.1,2

Over the last decade I have continued to compete as an endurance athlete. Below are my top three tips for new ostomates looking to stay on top of their hydration:

Tip #1 – Make sure you are getting enough hydrating fluid throughout the day 

It can be challenging to keep up with fluid intake, especially when living with an ileostomy.3 I know this from personal experience!

Start by talking to your clinician about how much fluid you need on a daily basis. They will be able to point you to the best resources for your specific needs. General guidance is available online, but every body is unique. Keep in mind that the resources you come across online are going to be calculating fluid needs for a person who has all of their internal organs. So once you identify that baseline, ask your doctor if you need to increase your fluid intake above that level. In my case (i.e., as someone who is extremely active and has had their entire large intestine removed), I take in about 20% more fluids than what the average online calculator recommends.

Tip #2 – Be aware of when and how you are taking in your fluids 

Make sure to spread out the volume of liquid that you’re drinking as evenly as possible. In other words, take small and frequent sips throughout the entire day. This is important because our bodies are not perfectly efficient at absorbing the fluids that we put into them.

For example, you may have determined that you need around 100 ounces of liquids each day to meet your hydration needs. However, if you were to wake up in the morning and drink all 100 ounces right away, you would end up urinating most of that water out. In addition, drinking too much water at one time can dilute your body of the electrolytes it needs to properly absorb water which can exacerbate dehydration. Spreading out your fluid consumption evenly throughout the day is going to allow your body to work most effectively.

Keep reading on Hollister.com.

Hollister Incorporated is a proud sponsor of United Ostomy Associations of America and dedicated to delivering the highest standard of quality in ostomy care products. To learn more, visit www.hollister.com/ostomycare or call 1.888.808.7456.

 

References:
1. Justiniano, Carla F et al. “Readmissions With Dehydration After Ileostomy Creation: Rethinking Risk Factors.” Diseases of the colon and rectum vol. 61,11 (2018): 1297-1305.
2. Chen, Sophia Y et al. “Predicting the Risk of Readmission From Dehydration After Ileostomy Formation: The Dehydration Readmission After Ileostomy Prediction Score.” Diseases of the colon and rectum vol. 61,12 (2018): 1410-1417.
3. Absorption of Water and Electrolytes (colostate.edu) – http://www.vivo.colostate.edu/hbooks/pathphys/digestion/smallgut/absorb_water.html

 

Collin received compensation from Hollister Incorporated for his contribution to this article. The testimonials, statements, and opinions presented are applicable to the people depicted. These testimonials are representative of their experience, but the exact results and experience will be unique and individual to each person. Please make sure to consult with your healthcare professional for further guidance and instruction. The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. 

Do you speak stoma?

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A New Guide aims to help you find the right words to talk about your ostomy

By Joga Ivatury, M.D., MHA

The Speaking Stoma Guide is the first health communication guide for people with ostomies. This work was coproduced through collaboration with ostomates worldwide, UOAA, clinical experts, and health communication experts. This guide is freely available here on UOAA’s website, encompassing 11 communication topics areas including managing pouch leaks, communicating with friends and family, and intimacy.

This work has been inspired by our experience working with ostomates. We recognize that talking about your ostomy will not always be easy. We created the Speaking Stoma Guide to help. We hope this guide gives you an idea of things you could say if you are ever in similar situations and ways to manage challenging social situations that may arise. Each section has a big topic and has different situations that you may experience. In the next section, we will provide a snapshot of situations inspired by real people with ostomies.

Leaks
In this section, we have suggestions for what you might say to help manage the situation based on how much you want to disclose about having an ostomy. These phrases were produced directly from things ostomates told us. For people who did not want to disclose anything about having an ostomy (low disclosure), a person may say, “Can you show me how to get to the bathroom?” For high disclosure, a person may say, “Can you show me how to get to the restroom? My ostomy pouch has leaked and I need to clean up. Would you be able to find me an extra set of clothes? I really appreciate it!” Each section has several suggestions like this.

Talking About Food
With an ostomy, some people have limitations on the food that they can eat. Some ostomates expressed embarrassment when they couldn’t eat the same food everyone else is eating. It’s hard to say “no” whenever someone offers you food. One participant noted that he once told a host on behalf of his wife: “Please don’t take offense. She doesn’t eat these things. It’s not your cooking.” For higher disclosure, a person may say “Thank you so much for inviting me. After my surgery I’m still figuring out the foods that make me feel best, so I ate before I came. Everything looks delicious!” In general, there are many people with and without ostomies that have dietary restrictions.

Public Restrooms
What do you do when you need to use a public restroom to care for your ostomy and there is a long line! For low disclosure, you may consider saying: “Excuse me, I have an emergency and need to get to a restroom right now.” This does not reveal anything to strangers except the urgent need. For higher disclosure, you may reveal the presence of your ostomy and the rapid need for its care. People in line can be helpful too. One of our participants recalls how a stranger helped her get to the front of the line during a pouch leak.

Talking to Friends and Family
Time with friends and family are vital to everyone. How do you address having an ostomy with them? Some of our participants suggested having a “code name” for the ostomy that they can use with their family and friends to talk it in public. Unfortunately, some people have disparaging comments or jokes about ostomies once they know about it. Some ostomates use humor back to deflect the situation. It is also ok to say: “I am not really comfortable joking about my ostomy like that, but I am glad you will be willing to help if I need it. I really appreciate it.”

Noises
Noises happen! People with ostomies have no control of when they happen. In the beginning, our participants noted that they felt awkward about the noises their ostomies made. It helped people to remember that no one knows that the noises came from the ostomy. It is ok to say nothing (low disclosure). It is also ok to say: “Excuse me, I have an ostomy pouch and sometimes it makes noises” (medium disclosure).

Sex and Intimacy
Some people are not sure when or how to tell a romantic partner about their ostomy. There is no right or wrong time. Some people may choose to tell someone immediately, while other people might wait to tell the person until they know the person better. Your comfort is what is most important. We have suggestions and real-life testimonies in the guide related to speaking about sex and intimacy while having an ostomy.

Talking to Clinicians
We also go through ways to manage different levels of challenging social situations or what we term as “difficulty.” For example, you are in a clinical visit with a new physician who is not familiar with ostomies. Our participants universally encountered this situation. They noted that they often are the most knowledgeable person about ostomies in a clinical visit. In the guide we provide some easy to remember suggestions about how to manage this situation and others.

What’s Next?
We are scientists and this work does not end here. We are actively working to obtain funding to test this guide to see if it makes a difference for people with ostomies. We have also translated the guide into Spanish and are pilot testing it with people who prefer to speak in Spanish. Our experiences with major grant organizations, however, has been underwhelming to say the least. Some reviewers talk about “osteotomies” (surgically created bone holes) instead of ostomies demonstrating their complete lack of basic understanding. Other reviewers assumed that existing information already contained a wealth of communication-related information for ostomates. Despite these, we are undeterred and will keep pushing forward for funding. We would appreciate any support for this work from anyone including the ostomy community, ostomy pouch manufacturers, and local/state health agencies to keep the momentum going! We would also appreciate your feedback on the Speaking Stoma Guide. Please feel free to email me at jivatury@austin.utexas.edu.

Joga Ivatury, M.D., MHA, is an associate professor of surgery Dell Medical School and the inaugural chief of colon and rectal surgery at UT Health Austin. The Speaking Stoma Project was funded through the Communication for Health, Empathy, and Resilience Grant Program and created in partnership with Dell Medical School and the Center for Health Communication at The University of Texas at Austin.