Written by Danielle Gulden and Joe Teeters

We all know that “laughter is the best medicine”!  This year’s Ostomy Awareness Day Champions, Danielle Gulden and Joe Teeters, not only love that phrase, they live it! These two best friends, and co-founders of Double Baggin’ It are IBD warriors and permanent ileostomates. They’re also comedians, speakers and Two Best Friends without Buttholes!  They truly believe in the power of laughter, humor, advocacy and awareness! Which is why they LOVE Ostomy Awareness Day!  For them, every day is a chance to raise awareness.  But Ostomy Awareness Day is a special day to reflect and celebrate their life-saving surgeries and the lives they were given back! They share their stories so that future, new and veteran ostomates know that they are not alone!

Danielle and Joe have each been living with Inflammatory Bowel Disease for over 29 years.  Although their IBD and ostomy journeys have been quite different, their positive outlook on life and ridiculous sense of humor are the same!

Prior to 2014, Joe and Danielle had no idea the other existed…so, let’s rewind a few decades and learn about the journey of each of these Two Best Friends Without Buttholes!

Growing up, Danielle was a very healthy child, an extremely outgoing teen, and an adventurous free spirit! Spontaneity was her specialty, and travel was always her first love!  Joe, on the other hand, always had “poop problems.” He was always pooping and known as “Joe the Pooper” by his siblings. Like Danielle, he was an outgoing, active, and social teenager.

Fast forward to Danielle’s late teens and early 20s. By the time she was a sophomore at The Ohio State University, Danielle’s health drastically changed! She saw her busy social life dissolve; she’d make plans and have to cancel. Spontaneity was no longer an option, and the idea of traveling was now a nightmare!

Danielle had to drop out of classes because of her poor health.  Her symptoms and pain were becoming harder to ignore. She was in the bathroom around 25 times a day and became extremely malnourished and anemic.

You can hide your bag, but don’t ever let your bag hide you!

After being misdiagnosed for 6 years with a gluten intolerance, a colonoscopy in April of 1999 showed severe ulcerative colitis.  From 1999 until 2007, Danielle’s life was a constant barrage of colonoscopies, radiological tests, bloodwork and pharmaceutical cocktails.   She did the research and finally decided to have ostomy surgery.

After high school, Joe enlisted in the Naval Reserves. He passed the military physical and was cleared for training.  While away, Joe’s poop problems became more pronounced, and the pain was gradually becoming more than just an annoyance.

When he returned home after 5 months, he was in the best physical shape of his life. On the outside he looked healthy, but inside something was wrong. Joe was initially diagnosed with irritable bowel syndrome, then a colonoscopy in 1993 lead to his diagnosis of severe Crohn’s Disease. Two years later he had his first intestinal resection. Joe’s Crohn’s continued to advance, and he had a second intestinal resection in October of 2004.

Back in Cleveland, Danielle was super excited for her ostomy surgery! She was ready to stop being a prisoner to her bathroom and get back to living her life to the fullest! On April 30th, 2007, Danielle had her total proctocolectomy with end ileostomy at the Cleveland Clinic. It was truly one of the greatest days of her life! She high fived every single person on the way to the OR.

From day one, she embraced her ostomy, and her new life as an ostomate. Within a month or two of her surgery, Danielle was back to exploring and enjoying her pre-sickness hobbies and joys. She traveled, hiked, camped, swam, went to concerts, and amusement parks. Life was good again! She also joined the Cleveland chapter of the UOAA and eventually became active on their executive board.

Fast forward a few years, and 120 miles away in Columbus, Ohio. Within a year of his second resection, Joe’s rectal Crohn’s disease became severe, and his rectum very strictured.  After consulting with his GI and surgeon, Joe had a full proctocolectomy with end ileostomy on December 27th, 2012.

Joe’s recovery process and post-surgical experience was very different from Danielle’s. In addition to becoming an ostomate, the amount of bowel he had lost from three surgeries left him with Short Bowel Syndrome. It took the better part of a year to fully recover and return to pre-surgery activities.

During Joe’s recovery, a Facebook support group for ostomates became a lifeline. It was a great source of inspiration and hope, and a wonderful place that showed him he was not alone. Later, he sought out Central Ohio United Ostomy Association support group and became a member of the organization.

By now, you must be wondering how the heck these Two Best Friends Without Buttholes finally met.  As you can see, they have traveled separate but similar paths in their battles with Crohn’s and ulcerative colitis.  Their paths crossed in that Facebook support group mentioned earlier, when Danielle posted that she and her family were relocating to Columbus, Ohio. Joe, being a Columbus resident, and fellow ostomate, reached out and introduced himself. After meeting in person, in late 2014, at their local UOAA Affiliated Support Group, they started hanging out after the meetings. They soon discovered that they had a very similar outlook on life and shared a ridiculous sense of humor, and they wanted to use that to help others. A best friendship began…and slowly but surely, their vision for Double Baggin’ It was coming together. They decided to go to the United Ostomy Associations of America’s National Conference in September of 2015. There, after meeting over 400 ostomy patients like themselves, they decided to stop dreaming and start making their vision for Double Baggin’ It a reality. Double Baggin’ It was born, that week, when they filmed their first DBI video on a rooftop in downtown St Louis, Missouri.

Through Double Baggin’ It, Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and Inflammatory Bowel Disease. They advocate and raise awareness at the local and national level for both United Ostomy Associations of America and the Crohn’s and Colitis Foundation.  Danielle and Joe also visit with their legislators yearly in Washington, DC to share their voices and stories.

You can find them on Facebook, Instagram, TikTok, Twitter and YouTube (@DoubleBagginIt) where you can watch them raise awareness through shenanigans and ostomy-bombing (placing an ostomy bag on a statue, landmark, anywhere they see fit!) They also can be found speaking at IBD and ostomy conferences, support groups, camps, hospitals and classrooms – sharing their stories and spreading laughter through improv. Danielle and Joe know that not everyone is comfortable rocking out with their bags out – and that’s totally ok! What these Two Best Friends Without Buttholes want to make perfectly clear, is that “You can hide your bag, but don’t ever let your bag hide you!”

Join with this year’s Ostomy Awareness Day Champions in spreading awareness by following Double Baggin’ It and UOAA on social media and visiting the Ostomy Awareness Day page to keep up to date on all the latest events.

 

By Robin Glover

The Run for Resilience Ostomy 5k is set to return for its eighth year beginning on Ostomy Awareness Day, October 1, 2022. This year’s event will feature both in-person races around the U.S. and the worldwide Virtual Ostomy 5k. Individuals and teams will be running, rolling, or walking to raise money and show their support for the critical programs and services of United Ostomy Associations of America (UOAA).

Ostomies Are Life-Savers

No matter their story, there are two things all ostomates have in common: incredible resilience and a life saved or much improved by ostomy or continent diversion surgery. The Run for Resilience 5k is a celebration of that. And while every participant can get a run t-shirt with “Ostomies are Life-Savers” emblazoned on the front, each of them have their own stories and reasons why.

For Sydney, a 23-year-old living with an ileostomy, she’s participating and fundraising for the Virtual Ostomy 5k to share the story of how ostomy surgery saved her life. She also wants to serve as an inspiration to other young people facing similar challenges and let them know they can “live the life they want because of the ostomy bag” and not in spite of it. Sydney exemplifies the resilience of the ostomy community.

Liz exemplifies that resilience, too. A month and a half after being diagnosed with bladder cancer, she underwent a radical cystectomy (bladder removal) with a total hysterectomy and stoma placement. Liz is now an advocate who wants everyone to know that her urostomy saved her life. She and a fellow UOAA Support Group leader are hosting a Virtual 5k walk in Cincinnati  because “we are living proof that ostomies are lifesavers and that you can have a fulfilling life with an ostomy.”

The need for an ostomy or other continent diversion isn’t always directly due to a medical condition. Stefphanie was hit by a drunk driver and underwent eleven surgeries in the two weeks following the crash and required both an ileostomy and a mucous fistula. Though hesitant to talk about it at first, she’s now thriving and wants to share her story to inspire others.

If you don’t want to run or walk yourself, consider shining a light on this resilience by supporting the fundraisers of people like these.

In Person Events Are Back This Year!

In addition to the Virtual Ostomy 5k which can be held anywhere by anyone, in-person Run for Resilience 5k events are back this year!

These events are family-friendly gatherings and a chance to share ostomy awareness in communities all around the country. Most events take place on beautiful parkland or waterfront trails. They also all feature an opportunity to visit with ostomy product representatives in person and visit other event sponsor tables. Race participants will also receive a goodie bag with promotional items and educational materials.

Don’t worry if you are not in running shape ­– do what you can. Walkers outnumber runners at many of these in-person fun runs. More serious runners looking for an event to attend however may want to travel to the Durham, North Carolina Run for Resilience Ostomy 5k as it takes place on a timed and certified 5k course.

Past participant Lianne Weller shared what makes these events special, “The 5k race allows other ostomates to build confidence and breakdown barriers to getting back into physical shape; going one step closer to their goal. I feel more confident and less self-conscious because I’m surrounded by individuals who have all gone through similar obstacles.”

As envisioned by the 5k founders, all locations will get an optional ostomy pouch provided by Exclusive Diamond Sponsor Hollister. Non-ostomates are encouraged to wear their ostomy pouches during the race. (Don’t worry. They’re easy to put on.)

The Arizona Run for Resilience Arizona 5k will have a great new location in Scottsdale on October 1st, 2022, with a 5k run/walk and a fun run for the kids.

The newest in-person event is the Miami, Florida Ostomy 5k taking place at the University of Miami Campus in Coral Gables on Saturday, October 1st, 2022, from 9:00 am to 3:00 pm. Organizer Ana Restrepo says the event will include food, drinks, games, giveaways, and more.

Other in-person Run for Resilience 5k events being held across the country in celebration of Ostomy Awareness Day on Saturday, October 1, 2022 are:

Vancouver, WA

Nashville, TN

Boise, ID

Birmingham, AL (October 8th)

(Please follow each individual link to get more information about times and types of races.)

 “I Intend to Be Victorious”

For every person living with an ostomy or other continent diversion, there’s a story of resilience to go along with it. A virtual participant who goes by Poo and Friends, is working to take their life back one step at a time and they “intend to be victorious.

You can learn more about other participants of each race location or the worldwide virtual by clicking on the circle above their name and reading their story.

Don’t forget to click “Load More Fundraisers” to see them all, including Tanya who’s one of the many wonderful Certified Wound Ostomy Nurses (CWON) and Wound Ostomy Care Nurses (WOCN) taking part in the 2022 Run for Resilience Ostomy 5k.

Share Your Story Too

Are you someone who wants to help break the stigma around ostomies and be an inspiration to others? You’re encouraged to sign up, create your own fundraiser, and share your story. After all, the story of your journey can be what helps someone else make it through theirs.

To participate in the Virtual Ostomy 5k and get this year’s awesome Ostomies Are Lifesavers T-shirt in time for Ostomy Awareness Day you have to register by September 9th.

  • Run, walk, roll or pedal a 5k (3.1 miles) route of your choice. You can even use a treadmill!
  • Take pictures of yourself during your race and email them to info@ostomy.org or message or tag UOAA on Facebook, Instagram, Twitter, LinkedIn or TikTok
  • Hashtag your photos with #OstomiesAreLifesavers and #RunforResilience

Friends, family, members of the medical community, and anyone else who wants to support ostomates and celebrate their resilience are also encouraged to donate or create their own fundraiser. Fundraisers will receive special promotional items depending on how much they raise.

Help Support UOAA

Funds raised during the 2022 Run for Resilience Ostomy 5k will support United Ostomy Associations of America (UOAA), a 501(c)(3) nonprofit organization that provides national advocacy, support and resources for the 725,000 to 1 million Americans who have had or will have ostomy or continent diversion surgery. These surgeries are lifesaving and have allowed many people to return to living a healthy life.

To find out more about the Run for Resilience Ostomy 5k please visit www.ostomy.org/5k.

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

By Robin Glover

Ostomy surgery is a life-changing event. As ostomates, we go through things other people will never have to experience. Everybody’s story is different, but we have all shared in many similar aspects of our journeys. We are a unique community of strong and courageous people of all ages and backgrounds.

To celebrate that, United Ostomy Associations of America is hosting the UOAA 2022 Virtual Ostomy Symposium on Saturday, August 13, 2022 from 10:30 a.m. to 5:30 p.m. Eastern Time (7:30 a.m. to 2:30 p.m. Pacific) including breaks.

This symposium will feature a mix of ostomates, j-pouchers, and medical professionals delivering a fun, engaging, and informative day of learning, laughing, and community-building.

Questions you were too afraid to ask will be answered. Questions you didn’t even know you had will be answered.

In all, 22 speakers will be bringing their expertise on a variety of ostomy-related subjects. (And don’t worry, each session will be recorded so if you can’t make it live that day or can’t see all of the ones you want, you’ll be able to watch them later.)

You can find the full list of speakers and the agenda here.

What to Expect

The virtual lobby will be open at 10:30 AM EDT before the speaker sessions begin to chat, troubleshoot any tech issues and explore the agenda. Ticket holders get an email with a unique link to the event. Attendees are encouraged to enter “lounges” organized by ostomy or continent diversion type (and one for caregivers) to chat or meet with others like you. These will be open for the entirety of the event for those who want to pop in and out during breaks.

Sponsor Booths will also be open throughout the event to give ticket holders the opportunity to talk with representatives of ostomy product manufacturers and suppliers ­– and learn about the latest product advancements. Thanks to all our symposium sponsors including Platinum Sponsor Convatec for helping to make this event possible.

The most important participant for this year’s UOAA Virtual Ostomy Symposium is you.

After opening remarks from UOAA leadership, the symposium will kick off on the Main Stage with Louie Green, a standup comic and recent ostomate. He’s going to share his poignant ostomy journey with a bit of welcoming wit.

Next on the Main Stage at 12:40 AM EDT, Joy Hooper’s Ostomy BUZZables presentation will present the newest innovations and ostomy products available on the market. If there’s something new in the ostomy world, you’ll hear about it here.

Educational Sessions 

Throughout the day, Educational Sessions will run concurrently between the Main Stage where you’ll get to hear from wonderful WOC nurses, experienced ostomates, amazing doctors and dedicated advocates.

Presentations will cover everything from sex and intimacy and traveling the world with an ostomy to nutrition and staying hydrated and dealing with hernias. Other session topics will focus on peristomal skin issues, aging in place with an ostomy, affiliated support groups, and secrets of the big four stoma types.

There will also be a special workshop for young adults. Inspiring ostomates Molly Atwater-Pulisic and Collin Jarvis will be co-hosting the conversation about physical activity, relationships, and mental health for ostomates ages 18-35.

Attendees will be able to submit questions for the speakers during the presentations and the speakers presentation materials will be available to access at you leisure.

After these educational sessions be sure not to miss Dr. Janice Beitz back on the Main Stage at 3:55 PM EDT for a presentation titled If You See a Toilet in Your Dreams, do NOT use it! Emotional Support, Quality of Life and Humor. It will look at the power of humor in dealing with emotional challenges while dispelling some myths and misconceptions about ostomies.

The event will come to a close with a special presentation from Magen Cherry, a j-poucher and winner of the 2007 Miss Texas USA competition. She uses her platform to share encouragement and bring hope to fellow ostomates and j-pouchers coming to terms with their new reality. Fun fact: Magen had a colonoscopy three days after being crowned Miss Texas USA!

Connecting with a Caring Community

Of course, there are going to be plenty of great speakers but the most important participant for this year’s UOAA Virtual Symposium is you. By taking part in this event, you’ll be able to connect with a thriving ostomy community (or j-pouchers or any other type of continent diversion) and help us grow even stronger.

As we all know, living with an ostomy or other continent diversion isn’t always easy. It can be isolating. Sometimes even close friends and family don’t want to hear anything about it. There’s fear of the future and worry about existing relationships.

Many new ostomates want to hide it forever and hope no one ever finds out. But, through organizations like UOAA, they’ll find out they’re not alone and that life with an ostomy shouldn’t be something to be ashamed of, but rather that ostomies are life-savers and that you can join others in a celebration of being alive.

This year’s event is going to be awesome. Questions you were too afraid to ask will be answered. Questions you didn’t even know you had will be answered. You’ll get to connect with wonderful people while gaining inspiration and knowledge that could impact the rest of your life – and the lives of others.

As you can see this is not your typical webinar or Zoom call and the $35 ticket (plus $3.88 processing fee) and sponsor support of UOAA (a 501(c)(3) charity) help to offset the costs of hosting this special event.

All of this is leading to UOAA’s in-person National Conference in Houston in August of 2023. The connections you build during this year’s virtual event can open the door to even deeper friendships when we all get to meet each other face-to-face next year in Houston!

The UOAA 2022 Virtual Ostomy Symposium on Saturday, August 13th is going to be a great time and a great experience. And we need you there to make it even better.

To get all the information, learn more about the speakers, or find out how to get tickets, head to the event website.

This event has passed but you can view it below. “This is My Life Now: A Patient Guide to Advocacy” By ConvaTec featuring UOAA Advocates.

Join ConvaTec for a live discussion with ostomates, nurses and other healthcare professionals at their two-session, one-day virtual summit on Friday, October 1, 2021.

“Ostomates’ Rights Are Human Rights – anytime and anywhere” is this year’s World Ostomy Day theme, which is why ConvaTec is bringing together ostomates, nurses and caregivers to lead open discussions that will be patient rights-focused fostering awareness, education, and advocacy.  Together we will have conversations that matter!

The Patient Summit will be broken into two sessions:

Session 1, 1pm EST: This Is My Life Now: A Patient’s Guide to Advocacy:

Joanna Burgess, BSN, RN, CWOCN. Is a WOC Nurse at Convatec and is Co-Chair of UOAA’s Advocacy Committee

Jeanine Gleba, MEd., UOAA Advocacy Manager

Ellyn Mantell is a UOAA Advocate, Author and Ostomy Support Group Leader.

Did you know that by knowing your patient rights and feeling empowered and exercising those rights – you can take those situations where you felt down and make it positive. Think, “This is MY life now. I have the right to be me.”

Learn about your local and international ostomy support resources, understand your patient rights, and feel empowered to exercise those rights in this session.

Scheduled panelists:

• Ellyn Mantell (United States), UOAA Advocate, Ostomy Support Group Leader

• Jeanine Gleba (United States), United Ostomy Associations of America, Advocacy Manager

• Joanna Burgess (United States), WOCN, ConvaTec me+™ Nurse, UOAA Advocacy Committee Co-Chair

 

Session 2, 3pm EST: Creating a Healthy Bond: Healthcare Support for Your Patients:

Allison Rosen is UOAA’s World Ostomy Day Champion, a colorectal cancer advocate and Ostomy Support Team Member at MD Anderson.

Healthy bonds in life are all around us. But there may be times it feels difficult to bond. Do you know, or do your patients know, about the resources available for support? Whether that is support with a nutritionist so they can learn about fiber intake, or with an exercise therapist to get guidance on hernia prevention. It could even be the support a therapist can provide navigating new emotions in your personal relationships. There are healthy bonds that can be built between an ostomate and their healthcare professionals.

Create a strong bond with your patients and healthcare providers. Get to know the different types of pre and post-operative support available.

Scheduled panelists:

• Lorena Eltz (Brazil), Patient Advocate

• Lorraine Grover (United Kingdom), Psychosexual Nurse Specialist

• Allison Rosen (United States), United Ostomy Associations of America- World Ostomy Day Champion

 

Editor’s note: This blog is from ConvaTec, Platinum Sponsor of the 2021 Run for Resilience Ostomy 5k. This event raises ostomy awareness and helps fund the services and programs of UOAA, a 501(c)(3) nonprofit organization.

 

Hollister is proud to support World Ostomy Day! In partnership with United Ostomy Associations of America (UOAA), Hollister Incorporated is proud to stand with the entire ostomy community in celebration. Here are some ways you can learn something new, show your support, or connect with others in the global ostomy community.

Tune in to a Virtual Panel Discussion

 

 

 

 

 

 

 

Hollister has joined up with their sister brand based in Europe, Dansac, to bring you a virtual panel conversation with ostomates from around the world about their experiences and how they engage with the ostomy community. Tune in for a great conversation! Sign up for a reminder, and to submit a question for the Q&A.

Order Your Stoma Sticker

Stoma stickers are a great way to raise awareness, start a conversation, or show support. Order your free Stoma Stickers in time for World Ostomy Day, shipped anywhere in the US.

Share a photo or video of your Stoma Sticker on social media using #StomaSticker to be part of the conversation. Or show off your Stoma sticker while running the virtual Run for Resilience Ostomy 5K and share how you celebrated #WOD2021.

Share your #OstomateVoices and personalize your next Instagram or Facebook Stories with Hollister digital stickers. Search for them in the GIF library when creating an Instagram or Facebook Story and you’ll find a whole new collection.

Start Listening to #MyOstomy Podcast

 

 

 

 

 

 

 

 

Join Eve, Chris, Kelly, Ed, Gill, and Alice as they describe their challenges and breakthroughs with illness, symptom management, mental well-being, pregnancy, workplace conversations, and more in this limited run series. Each conversation helps to shine a light on the lived experience of illness, the positive impact stoma surgery can have, and the power of every person living with a stoma. Learn more

For more resources and interactive ways to get involved, visit Hollister.com/worldostomyday.

 

Editor’s note: This article is from Hollister Incorporated, Diamond Sponsor of the 2021 Run for Resilience Ostomy 5k. This event raises ostomy awareness and helps fund the services and programs of UOAA, a 501(c)(3) nonprofit organization.

By Jeanine Gleba UOAA Advocacy Manager

Every three years, ostomates around the world come together to celebrate World Ostomy Day on the first Saturday in October.  This year it will be held on October 2, 2021 and the European Ostomy Association (EOA) has declared the motto as “Ostomates’ Rights Are Human Rights – anytime and anywhere!” It is an opportunity for the world to join forces to increase public acceptance of ostomy surgery and to help people to better understand that health is a human right for everyone.

During the Covid19 pandemic the ostomy community around the world has been impacted such as ostomy nurse visits in the home being reduced and peer-to-peer support visits from an ostomy mentor in the hospital stopped.  In some countries, there has been limited access to ostomy supplies due to supply chain issues and/or limited access to affordable ostomy appliances. As a result, the EOA wanted to rekindle a focus on the Charter of Ostomates Rights

In the United States an ongoing UOAA advocacy initiative is to improve the quality of ostomy health care and ensure higher standards of care in all health care settings. One strategy to drive this change has been the utilization of the “You Matter! Know What to Expect and Know Your Rights Ostomy and Continent Diversion Patient Bill of Rights” as it specifically defines what high quality care should be expected and received during the ostomy surgical experience and for continuum of care. 

With the World Ostomy Day motto we will join the worldwide movement and the EOA’s goal to: “underline that ostomate rights are not negotiable. They must be respected by governments, politicians, healthcare authorities, companies and suppliers, by doctors and nurses, by every human and by every society – even in uncertain times.” 

Quality ostomy care should be provided to all regardless of race/ethnicity, age, gender, religion, place of birth, health or other status (even having an ostomy!). This World Ostomy Day you can help us drive change in the United States. Share the newly revised patient bill of rights poster (11×17 for printing purposes) with your ostomy surgeon, GI doctor, Primary Care Physician and/or ostomy nurse.  Ask them to ensure that these standards of care are utilized in their practice. 

As always there will be many other fun and important ways that people can participate in this year’s celebration! You can:

  • Attend an Online Event. UOAA 2021 Ostomy Awareness Day Champion Allison Rosen will kick-off the day with a Facebook/Instagram Live on the morning of October 2nd and also host a candid Q&A that evening. UOAA representatives will also take part in a host of ostomy educational events with partner organizations and others leading up to and immediately after World Ostomy Day. Follow us on Facebook, Instagram and TikTok for updates.
  • Watch our brand-new Ostomy and Continent Diversion Patient Bill of Rights animated series (Link available in September during the weeks leading up to World Ostomy Day)
  • Walk, Run, Roll or Pedal at UOAA’s 2021 Virtual Run for Resilience Ostomy 5k anywhere in the world. Register here and you’ll have the option to get our special World Ostomy Day t-shirt. This virtual event helps UOAA raise much-needed funds to improve quality of life for people living with an ostomy or continent diversion
  • Help UOAA get a proclamation declaring World Ostomy Day from all 50 states!  A sample is also available to download on our webpage noted below or you can take action at the state level here.
  • Upload our special “frame” for your social media profile photos that says you speak up for ostomy rights and use the hashtags: #WorldOstomyDay, #OstomyRights, #MyAccessMatters
  • Submit a letter to the editor of your local newspaper or reach out to local media. 
  • And so much more!

Visit the World Ostomy Day webpage for further details about the special events and the full list of all the ways to get involved.  

Let’s make the voice of ostomates in the United States heard around the world this year!

Photo Cred:  Dave Camara / Camara Photography

 

By Ed Pfueller, UOAA Communications & Outreach Manager

If you’re looking for Patrick McKinney you’ll likely find him outdoors. Depending on the season, McKinney, 54, of New Market, Maryland, can be found speeding down a ski slope, powering up a hill on his bike, tending to horses, or photographing his daughters playing sports.

That wasn’t always the case.  In 1984, as a 17-year-old, while donating at a high school blood drive, he was found to be anemic. The formerly active teen had been experiencing incontinence with blood loss for 18-24 months and was afraid to tell anyone.  After confiding in his mother and seeking a diagnosis, a colonoscopy revealed ulcerative colitis. By his mid-twenties he found himself hospitalized several times after his body stopped responding to conventional steroid-based therapies.  In 1993 he had the first of five surgeries that over the years eventually led to a temporary ostomy and a j-pouch. He was plagued by stricture problems and other issues with the j-pouch. “With the j-pouch I was still going to the bathroom 15-20 times a day when it was bad,” McKinney remembers. When another surgery was required in 2004 because his j-pouch perforated leaving him septic, his doctor at the Cleveland Clinic prepared him for the fact that depending on how it went, McKinney could wake up with a permanent ileostomy.

“It’s like being a kid again, wind blowing in your hair takes you back to your teenage years”

Indeed that was what happened and he experienced the struggles so many new ostomates have while trying to adjust both mentally and physically. McKinney now says, “Getting an ostomy was the best thing that ever happened to me, I got my life back.”

McKinney credits reading Rolf Bernirschke’s book Alive & Kicking for encouraging him to not be held back by his ostomy. “His book got my life back on a normal track. I started being an advocate and lived life again.” McKinney recalls.

McKinney wrote to Rolf and was honored to receive a Great Comebacks Eastern Region Award in 2008, which included the chance to meet the inspiring former NFL Man of the Year.  Since then he has embraced taking part in sports he had never even tried before having ostomy surgery.

McKinney’s first major post-surgery athletic challenge was competing in a half-marathon in Sonoma, California in 2009. The success of it inspired him to try other competitive sports. A family ski trip to Colorado piqued his interest in alpine ski racing. After entering an amateur event in 2014, he was surprised to learn his time qualified for nationals in his age group. After that he was hooked on “running gates.” McKinney has been alpine racing ever since and is a member of NASTAR’s Team Zardoz and the United Ski And Snowboard Association (USSA) Mid-Atlantic Masters Ski Racing Association and trains at Montage Mountain in Scranton, PA.

During the rest of the year, McKinney can most often be found on his bicycle touring the rolling hills of rural Maryland. As a member of the Frederick (Maryland) Pedalers Bicycle Club he rides over 3000 miles per year including events like the Tour de Frederick and the Civil War Century.

“It’s like being a kid again, wind blowing in your hair takes you back to your teenage years,” he says. For those hesitant to try riding again McKinney advises “Being prepared helps to put your mind at ease.” “Have a plan and know where the bathrooms are at local parks, I empty right before to go out. The back pocket on a cycling jersey is perfect for bringing extra supplies and wipes. My ileostomy tends to not have much output when I’m being active.”

In 2019 McKinney heard that UOAA’s National Conference was coming to Philadelphia, PA and welcomed the opportunity to see Rolf again and check out the unique event. Talking to other ostomates at the conference inspired him to do more with UOAA. “It helped me realize this is a chance to see what I can do, and that it is the right time to get more involved with the Frederick Area Ostomy Support Group.” McKinney has been an active member and is now the group’s President, supporting their activities even as in-person meetings were suspended this past year. In just the past few years he has offered his perspective as an ostomate to nursing students at a local community college and as an ostomy patient visitor. In support of Ostomy Awareness Day, he helped to procure proclamations from local government and organized a walk for the Run for Resilience Ostomy 5k, a major fundraiser for the programs and services of UOAA.

“Getting an ostomy was the best thing that ever happened to me, I got my life back.”

“The biggest thing is to provide some hope.  Almost everyone is devastated and so unsure about how to live through this experience,” McKinney says. On a national level, McKinney is now a member of the United Ostomy Associations of America Education Committee.

“I try to lead through living my best life. Sharing what I can do, but also keeping in mind to listen to your body. Get out there and walk, or ride on a bike.  For most, an ostomy will not impact that, I try to be encouraging and positive.”

His advice for other ostomates looking to get active? “Your only limitation is your mind.  If your doc says you are healthy enough do it, hydrate, hydrate, and always be prepared.”

Michael Seres started 11 Health as a direct result of his experiences as an ostomate. He had suffered with Crohn’s disease for over 30 years and after a small bowel transplant, he needed an ostomy. He felt alone and powerless. The bags were hard for him to get used to and they did not help to manage his condition – they just collected output. He started blogging and tweeting about his journey and found tens of thousands of patients who felt the same way but were too anxious or disempowered to do anything about it. Michael made a commitment that he would devote his life to making a difference for these patients.

Despite his health struggles, which included fighting and beating cancer multiple times, he found the strength to start a healthcare company that shares his single-minded focus of helping patients, and in particular ostomates. The company is called 11 Health as Michael was the 11th person in the UK to have had the pioneering transplant procedure. Only a few of the 10 that went before him survived the procedure. Michael did not just survive, he thrived and accomplished so much in his short life.

Advocacy was always a part of Michael’s life. He always found time to prioritize it amidst the challenges of running an international business and managing his health. In his talk at Stanford Medicine X in 2017, he talked about a revolutionary idea of using social media for doctor-patient communications. Michael believed that patients were the most underutilized resource in healthcare and he spoke beautifully about it in his famous TEDx Talk in 2018. The need for the patient to be at the center of patient care ran through his core. He felt that patients should not be passive end users. Instead, patients should be engaged in medical decision making and empowered by education and self-care tools. Michael’s reach was spread wide and he advocated for patients to the leadership of Google and even on a panel alongside Bill Clinton.

We lost Michael last year. Whilst our hearts are still filled with sadness, we are more determined than ever to deliver his vision of changing healthcare and making it patient centric.  He believed passionately in the ‘everyone included’ philosophy. A movement for change supported by doctors, nurses, policy makers but most importantly, patients. Making that change will be Michael’s legacy.

We are creating a special birthday Gutsy Gathering on March 23 from 3-7pm EST in Michael’s memory. It will not be a day to mourn. It will be a day to celebrate the achievements of an extraordinary man by inviting some equally extraordinary people to talk about their personal or professional involvement in the patient experience. Sessions will focus on themes relating to advocacy, confidence, community, and change.

The Michael Seres birthday Gutsy Gathering will be an annual event and an opportunity for friends to meet in a face-to-face setting. This year it will be virtual, with speakers joining us from around the world from across the ‘everyone included’ spectrum. The live sessions will run from 3-7pm EST and participants can come and go as their schedules allow. The event is free, and registration is required at www.gutsygathering.com. Our esteemed list of speakers continues to grow and can be found on the registration page. Please join us!

 

Editor’s note: This article is from one of our digital sponsors, 11 Health. 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.

Embracing Ostomy Advocacy and Giving Back

 

By Angie Davenport

I’ve had my ileostomy for 38 years due to ulcerative colitis but I only recently went public to encourage other ostomates.  Over the years I’ve helped many individuals by word of mouth while keeping my ileostomy private to the outside world. I have always wanted to be a blessing on a wider scope though to others with ostomies.

I was first diagnosed with ulcerative colitis in 1980 when I was three months pregnant.  At first, I thought it was pregnancy symptoms.  After a major episode, I was treated with medication for ulcerative colitis.  My son, James was born a few weeks early due to complications.

After the birth of my son in March of 1981, everything was under control and I eventually relocated from Warren, Ohio to Atlanta, Georgia.  While living in Atlanta I had a major setback with ulcerative colitis and I had to fly back to Ohio immediately and went directly to the hospital.

After several weeks of treatments in the hospital, my doctor came into my hospital room one night and said we have to do surgery or you won’t make it 24 hours.  I’ll never forget my mom crying and praying for God to give her my disease so I could have a normal life.

When I received my permanent ileostomy in March of 1982 I was a young 23-year-old single mom.  It was the day before my son’s first birthday.  I had never heard of an ostomy.  When I woke up in ICU I was devastated, ashamed and frightened.  I thought my life was over.

Once I became strong enough physically and mentally I moved back to Atlanta.  I was still feeling ashamed and frustrated until my physician in Georgia recommended I attend the local United Ostomy Association (the precursor to UOAA) support group.

While living in Atlanta I became very involved with the UOA group and completed the visitor training program.  I enjoyed visiting new ostomates at the hospital. I felt the freedom to be involved because no one really knew me in Atlanta. I remained active until I relocated back to Ohio in 1985.  That same year I married my high school sweetheart and we will celebrate 36 years of marriage in November.

Although I was very private about my ostomy I was very successful in my career. I became the first African American female officer at our local bank and functioned in several positions without the exposure of my ileostomy.  After the downsizing of my employer, I later worked 10 years at Great Lake Cheese until retiring in 2016.

What is my purpose in life?  How can I make my mom proud?

I’ve enjoyed my life as an ostomate.  I love traveling, cruising and shopping.  I was known in the business community as a person that loved to dress. I taught Dress for Success at the bank for all new tellers.

The past few years were filled with so much grief, with the most current being the death of my mom on July 4th 2019, only three days after my 60th birthday.  I was feeling the deep void of losing a brother and both parents within 4 years, depression was setting in.  I had support but I felt helpless and lost.  What is my purpose in life?  How can I make my mom proud?

Most will remember 2020 as a horrific year with so much sickness, death and devastation from a deadly pandemic.  For me, I utilized the time to seriously seek God for a purpose in my life and being quarantined turned out to be a blessing in helping me find my purpose.

I knew my testimony would bring awareness and hope to so many people.

I became more involved via social media with other ostomates.  I’ve met some wonderful friends and it became rewarding to encourage others that had shared similar experiences as me.  My heart was really saddened when I read an article about a young man that had gone to court for the right to die because he didn’t want to live with an ostomy.  I wept.  Also seeing how some individuals can’t afford the basic ostomy supplies and had to use grocery store bags and tape to secure their ostomy bags was heartbreaking.  I knew then, that there was so much more I could do for the ostomy community.  I knew my testimony would bring awareness and hope to so many people.

As a member of Jearlean Taylor’s Ostomy Stylzz Facebook Group I participated in a virtual fashion show.  She is a personal inspiration to me and that show boosted my confidence to a much greater level.  I felt a relief to go public.  I chose August 14th, 2020 to go live on Facebook and share my story.  I felt such freedom once I finished.  There were family members, coworkers, church and community friends that responded and supported me in disbelief.  For the past 38 years, they never knew I had an ostomy.

One family friend messaged me and told me that he was scheduled for surgery but has canceled many times, but because of my video he felt he could now go through it.  I still check on him to make sure he’s not having any problems.  That made going public all worth it.  But what else could I do?

I decided to participate in the Run for Resilience Ostomy 5K.  I registered over 20 walkers to participate virtually in several cities and I exceeded my fundraising goal by almost 100%.  The highlight of the day was my local mayor stopping by to present me with a proclamation from the City of Warren in support of ostomy awareness. Our local newspaper also highlighted the event.

…because of my video he felt he could now go through it.

After posting my Ostomy Awareness Day photos and story on Facebook I was contacted by so many family and friends willing to support me in the future.

With the pandemic still active, I’ve been limited in getting out in the public but I do try to make an effort to encourage other ostomates daily.  I’ve connected with my local Affiliated Support Group leader and I’m looking forward to greater things once we can meet publicly.

On, March 6, 2021 I will be a 39-year ostomate.

I’m on Facebook and I have a Youtube video discussing my ostomy journey.

I’m free, living with my ostomy!