Ostomy Strong and Giving Back on the Ice

By Ed Pfueller, UOAA Communications and Outreach Manager

In 2015 things were looking up for Justin Mirigliani. An active father of two, his ulcerative colitis symptoms were in remission. In his free time, he was an avid weightlifter and loved skiing and playing ice hockey.

He probably could have been forgiven if he wanted to skip his yearly colonoscopy, it was his 10th test since his ulcerative colitis diagnosis in 2002. But his doctor made sure he was scheduled, and he went in. It was a decision that likely saved his life. He discovered he had to have his entire large intestine removed due to a severe precancerous condition called high grade dysplasia. A video before his ileostomy surgery shows the raw feelings of this life-changing event and the video below shows his journey to healing and thriving.

Since that surgery on September 24, 2015, he has vowed to do all he can to help others who suffer with IBD and to help remove the stigma attached to those who have a “bag.” Justin is determined to show, through his active lifestyle, that nothing is impossible with an ostomy. Justin has given himself an epic challenge to prove this point. He has continued weightlifting and is trying to become the first ostomate to bench press 405 lbs. You can see this journey documented on his YouTube channel The Strongest Ostomate in the World. (Parastomal hernias are a risk for all ostomates so check with your doctor before starting any exercise regimen.)

Though Justin had developed a small bulge around his stoma very early on, he is careful to complete lifts that do not add excessive internal pressure, like deadlifts or squats. He wears a binder to help support the area around his stoma anytime he lifts anything remotely heavy. In the past four years of heavy bench pressing, shoulder pressing, and bicep work, there has been no change in the bulge around his stoma. So as not to neglect his legs, Justin runs flights of stairs with a weighted vest. As he says, “It’s just a matter of improvising.”

Justin has also given back to the IBD community by creating Checkmates Charitable Association. Checkmates’ main event is a yearly hockey game with NHL alumni. Recently Justin decided to expand his charity’s mission to also benefit the ostomy community. “The UOAA Conference in Philadelphia has definitely opened my heart to wanting to include UOAA and do anything I can to help our community,” Justin says.

In 2020 Checkmates is expanding its mission into Canada by sponsoring a “Disease Without Borders” International NHL Celebrity Hockey tournament with its first game this February in Toronto, Ontario. The winner of that tournament will come down to the U.S. to play the Checkmates team at the Philadelphia Flyers Skate Zone in Voorhees, New Jersey in April. Justin’s ultimate goal is to use this year as the template for NHL Celebrity Hockey games and tournaments throughout cities in the US and Canada.

Justin says of the fundraiser, “We will never stop striving to make the lives of those with IBD and those living with an ostomy the best lives they can be!”

Like any other nonprofit organization, Checkmates is always happy for helping hands. If you are interested in volunteering with Checkmates please contact Justin. Checkmates is also looking for hockey players who want to play on the same ice with NHL stars. Players must be 18 or older, be able to ice skate forward and backward and be able to shoot a hockey puck.

Justin is grateful to his doctors, who saved his life, he and his family created this PSA to warn everyone to get their colonoscopies. Please share it. It just may save a life!

Until IBD has been eradicated and every ostomate is properly cared for, Justin promises that Checkmates will be on the front lines fighting for these communities to the best of its abilities. Justin believes “No matter what, your illness or ostomy will not hold you back!”

 

 

Subject of the movie White Boy Rick reveals why depicting his ostomy was critical to the story.

 

By R.S. Elvey

Hollywood movies, both fictional and nonfictional, thrive on melodramas depicting romance and violence. Car crashes, explosions, shootings, and all kinds of mayhem deliver gruesome injuries to victims and survivors. The 2018 film White Boy Rick, starring Matthew McConaughey and Richie Merritt, has all these components but is unique in showing the personal aftermath of a violent act – in this case scenes depicting an ostomy.

The film, set in the 1980s on Detroit’s eastside, tells the true story of Rick Wershe, Jr., called by the local newspapers “White Boy Rick” and his father Richard Wershe, Sr. During that decade, Ronald Reagan’s War on Drugs is in full swing and the FBI is anxious to break up drug dealing and crooked police in Detroit. Agents observe 14-year-old Rick mingling with a local drug lord and his father selling illegal guns to drug gangs. They meet with Rick and his father and offer them a deal. To prevent his father from going to jail, Rick, at 14, would become an informant working for the FBI. His father agrees to the deal and Rick becomes the youngest informant ever undercover for the FBI.

While working for the FBI, Rick becomes more and more involved in the daily activities of a leading Detroit drug lord and his gang. They become suspicious of Rick and he is shot in the stomach by a .357 magnum. The bullet enters and goes clean through, severely damaging his large intestine. He is rushed to Ascension St. John’s Hospital, Detroit, where lead surgeon Dr. Norman Bolz and others save his life. He awakes with a lifesaving ostomy.

The first time the ostomy pouch appears in the film is when Rick and his father are coming home from the hospital. Rick has his left hand over his stomach and the pouch is overlapping his pants. He is also depicted emptying his pouch. In a recent correspondence with Rick from prison he said, “When I woke up, I didn’t realize that I had it. I think I touched my stomach and then first felt the bag. I didn’t know what the bag was. Dr. Bolz came in and explained to me what the bag was and how it worked. The bullet had torn through my intestines and the doctors were hoping the intestines would heal and that it could be reversed, but that it would take a while.”

The real White Boy Rick young and old.

Rick Wershe, Jr. “White Boy Rick” when he was convicted in the 1980’s and today behind bars over 30 years later.
Top photo credit: Sony Pictures

 

While in the hospital the staff showed him how to empty and change his pouch. At home he was never seen by an ostomy nurse or received any other ostomy maintenance training. He said, “I basically had to learn on my own. Fortunately, I really didn’t have any skin problems. I had to keep the bag clean and was able to do a pretty good job. I had skin irritations but it was not too bad. I was lucky.” His friends were young and they were shocked when they saw his bag. But he said, “My family, especially my dad and grandparents, tried to be as helpful and supportive as they could.” He also met others who had ostomies. Rick had to pay for his own supplies at a local pharmacy which proved very expensive. His father wanted him to wash and reuse the pouches but Rick wouldn’t do that. He would use 2-3 new pouches a day.

Andy Weiss, one of the movie’s screenwriters, spoke numerous times with Rick while working on the screenplay. When asked why the ostomy scenes were included he said, “The ostomy scenes are the core of showing Rick’s vulnerability and what I was hoping to get from it was the sympathy and empathy that he deserved but never received from law enforcement or the people around him at that time.” Rick insisted that his ostomy should be part of the movie saying, “We included the ostomy scenes because I thought it was important to show young kids and adults that you can go through this and still be ok.” And get through it he did. Rick says that the ostomy proved to be no hindrance either socially or in his daily dealings. A year and a half after his original surgery, Dr. Bolz performed a successful revision.

Rick soon faced even greater challenges. Abandoned by the FBI and his family needing money, Rick and his father turned to the only way they knew how to make money, dealing drugs. Eventually, Rick was arrested and sentenced to 30 years for drug dealing. Now 49-years-old, he is scheduled to be paroled in 2020.

When ostomates watch the movie, the ostomy is immediately recognizable. But numerous reviewers of the movie never mention the ostomy scene. Ostomate, Robin Glover on ostomyconnection.com, wrote after viewing the film, “There were some inaccuracies, but it will definitely raise awareness and change what the word “ostomy” conjures up in the mind of anyone that sees it.” Joy Hooper, United Ostomy Associations of America’s 2019 WOCN of the Year was enthusiastic in her response to the film and said of the screenwriter, “I appreciate his way of displaying life with an ostomy. He did a superb job. He was able to show what many consider a negative aspect of life respectfully.”

White Boy Rick is now available on streaming services.

My View: By Connie Confer

Most of the nation is gearing up for Halloween, with all of its tricks and treats. But as a lesbian who wears an ostomy bag, this month also includes some more personal holidays worth celebrating, especially if we want people to feel more accepted and safe.

Did you know that Oct. 5 was Ostomy Awareness Day? Just like the more established National Coming Out Day (Oct. 11), it brings an opportunity for people to celebrate their differences and their courage as they announce, perhaps with some trepidation, that they live with certain realities. They hope their family and friends will not shy away. They hope their bosses will not fire them.

That fear is completely rational. Just this week the U.S. Supreme Court heard oral arguments in cases that could indeed decide whether someone can be fired for being gay or transgender. We will have to wait for months to hear their decision and how it will impact our laws. But in the meantime, I want to advocate for acceptance, not alienation. I want to argue that open communication creates community and reduces stigma for people in my own life circumstances.

Yes, it is tricky to navigate the reactions of the world, and it takes some courage. But the treat continues to be that we are not alone. The LGBTQ community is indeed a family, with gay pride parades in every major city, and support groups for people who want to come out to their friends or family, or for parents and other family members who want to support a gay or transgender young person navigate in an unfamiliar world.

Connie Confer, left, at the California General Assembly where she has been key to getting proclamations to recognize Ostomy Awareness Day.

Similarly, my local Southern California, Inland Empire Ostomy Association, offers support and practical advice for people who find themselves facing surgery for an ostomy pouch. As do over 300 other United Ostomy Associations of America (UOAA) affiliated support and Information groups nationwide.

No wonder people worry when they hear they will be among the 100,000 people in the United States who will get an ostomy this year. The treatment for diseases such as cancer or Crohn’s almost sounds worse than the disease. People wear a pouch attached to the abdomen that holds urine or feces that must be emptied and changed regularly. It can be embarrassing to talk about it, but just the same, we must.

That surgery is life-saving. I am living proof. And the routine of wearing the pouch seems quite easy and normal to me now. I find that I can talk about it with people close to me, and that I do not feel any stigma. For others who want to get to a place where an ostomy pouch feels routine, you should consider attending a UOAA affiliated support group near you.

There is no reason to suffer in silence and there is every reason to be fully and proudly yourself, no matter what your reality. And if you are not impacted by these specific things, make sure you are supportive to friends and family who are.

Life lived honestly can be a real treat.

Carolyn “Connie” Confer served as the assistant city attorney for Riverside, California and has advocated for the LGBTQ community for decades. She was there in September when Assemblyman Jose Medina declared Oct. 5 as Ostomy Awareness Day in California in honor of the work of the Inland Empire Ostomy Association.

“Funny how most people think an ostomy is the worst thing that could happen and I only see it as something that saved my life in so very many ways.”  Jeanne D. 

By Jeanine Gleba, Advocacy Manager

It’s such a simple truth – ostomies are life savers and yet, we continue to hear “I would rather die, then have an ostomy.”  That is why this year UOAA introduced the campaign “Operation Ostomy – A Life Saver”. Specifically, for Ostomy Awareness Day (OAD) held on October 5, 2019 the theme this year was fittingly “Ostomies Are Life-Savers”. It’s been exciting to see so many people embrace this theme from making custom life preservers to buying logo t-shirts for their entire families, to using #MyOstomyMyLifesaver to share their personal stories on social media, and educating others with this year’s infographic.

From Left, Gina Day, CWOCN and founder of the Ostomy Support Group of the Poconos and Advocacy Manager Jeanine Gleba pose with this year’s infographic banner at the East Stroudsburg, PA Run for Resilience on Ostomy Awareness Day.

For the second year in a row, our legislative champion was NJ Congressman Donald Payne as he introduced House Resolution 601 designating October 5th as National Ostomy Awareness Day. Furthermore, UOAA was honored to work with this year’s Ostomy Champion Grammy-Award winning recording artist Damon Little who has sung his way into our hearts by inviting all to celebrate and raise ostomy awareness in a video message.

UOAA had new ways to get involved with this special day including producing a new infographic that is available to download and print all year long at www.ostomy.org/ostomy-awareness-day/.   

This year for the first time the Centers for Medicare and Medicaid Services (CMS) recognized Ostomy Awareness Day in both their Medicare Learning Network and supplier newsletters. Also exciting was to have the support of the American Society of Colon and Rectal Surgeons (ASCRS) as they had a schedule of social media posts such as this one:

In addition, in 2019 we invited other organizations to collaborate with UOAA and had the privilege to raise ostomy awareness and engage the ostomy community during special events with these partners.  In case you missed the events, we are pleased to inform you that you can still tune into them virtually:

  • UOAA co-hosted with the International Foundation for Functional Gastrointestinal Disorders (IFFGD) and Therezia Alchoufete, MS, RD, LDN to bring you a Twitter Chat on Nutritional Support for People Living with an Ostomy.  If you missed the live chat, you can read it all here.
  • UOAA partnered with the WOCN Society to promote and celebrate ostomy awareness day. Listen to UOAA Advocacy Chair Joanna Burgess-Stocks talk all things advocacy, ostomy awareness and so much more in this special WOCTalk podcast episode! 
  • UOAA had the pleasure of working with the Crohn’s and Colitis Foundation to bring you a very special Facebook Live event with Double Baggin’ It. You can still watch it and learn so much from this inspiring duo and their healthy perspectives of having ostomy surgery!

Each year we expand our outreach with this annual event and here are a few statistics from 2019 activities:

  • Our Advocacy Network contacted legislators in 24 states requesting proclamations for Ostomy Awareness Day. The following proclamations were passed in these 11 places

            * State of California           * State of Colorado           * State of Connecticut

            * State of Massachusetts  * State of Missouri           * State of New Jersey       

            * State of Ohio                    * State of Pennsylvania   * State of South Carolina  

            * Frederick City, MD           * Kennebunk, ME

• 139,442 impressions from the Twitter Chat with a reach of 22,830.

• Over 200 personal #MyOstomyMyLifesaver stories shared on Instagram, Facebook and Twitter.

• Over 900 people took part in eight Run for Resilience Ostomy 5k event locations and a Worldwide Virtual 5k. 125 volunteered to make these ostomy awareness events a huge success.

UOAA is most grateful to all in the ostomy community who partnered with us or promoted OAD in their corner of the United States.

We hope you’ll join us next year when the big day will be Saturday, October 3, 2020. It will be the 10th anniversary of celebrating National Ostomy Awareness Day!  So get ready for an even bigger celebration.

Although Ostomy Awareness Day has come and gone, its impact will continue to spread across the country with each and every one of us.  Look for more from UOAA for our new “Operation Ostomy – A Life-Saver” campaign to stop stigma and save more lives.

My Colostomy Saved My Life

Without a colostomy, I would likely not be here to write this blog. It saved my life. I am a quadriplegic as a result of a spinal cord injury (SCI) that occurred when I was 16. That was 36 years ago. I am paralyzed from the neck down and SCI impacts the operation of the bowels. In simple terms, to move your bowels you have to use some type of stimulation because the regular nervous system is unable to work on its own.

For many years, I successfully used suppositories for my bowel routine. When they stopped working, I switched to a different type of suppository and began to use numerous stool softeners. Approximately three years ago, my system began to limp along. I couldn’t fully evacuate my bowels and I was losing my appetite.

And then one day my bowels stopped working. At that point I was using multiple enemas without success. I went to the hospital. Unfortunately, I had a history of bowel obstruction surgeries, so no doctor was willing to do a colostomy because of the risk of perforation of my bowels. As an attorney with the Federal government, I was unable to keep up with my job and had to retire on disability. I was bloated as if I was expecting triplets and felt horrible and weak. My quality of life was significantly impacted and my husband was cooking as much soup as he could, and that didn’t even help when it came to my appetite and nutrition. I tried acupuncture, stomach massage, herbal tea, you name it. I was depressed, exhausted, and scared.

My gastroenterologist suggested that I go to Mayo Clinic as a last resort. I traveled from Virginia to Minnesota with low expectations, hoping that the medical team could even just figure out something to help me go to the bathroom.

To my great surprise, Mayo Clinic agreed to do the colostomy. The surgery took place in late June, 2018, and since then I have regained my quality of life and feel like a new person. I have never been healthier. I have energy for work (my husband and I started a business, Happy on Wheels, LLC), social life, and exercise.

Many factors contributed to getting it right. First, colostomy nurses are my heroes. They marked the site for the surgery, fitted me with appliances to start off with, and explained how to apply everything. They trained my attendant on how to attach the flange and we examined the different types of pouches. I left with an initial supply, but they were very clear that it would be trial and error.

The ostomy nurses were spot on about flexibility. Every person is different and trying out different appliances is a necessity. There have been accidents and leaks and I have made adjustments. I have high output and cannot change my bag independently, so I devised a way to use an irrigation bag as a regular colostomy bag during the day, and I use a smaller pouch at night when I’m in bed. Additionally, figuring out the amount of supplies needed is unknown in the beginning. For the first couple of months we were frantically running around because I would run out of flanges and pouches. After about three months, I knew what I needed was able to establish a consistent ordering system.

My advice to anyone considering a colostomy is that the surgery is not the hard part. It is the period afterward when flexibility is needed. It is a learning process and each person is different. No pun intended, but there is no one size fits all.

Don’t get frustrated if your particular appliance doesn’t work. The companies that sell supplies, such as Hollister, Coloplast and Convatec, have very helpful representatives and are willing to send free supplies to try. I encourage new ostomates to also reach out to others who can provide tips on what has and has not worked for them. I have a good friend with a colostomy and her advice has been very helpful. The bottom line is that if you are open-minded and don’t get frustrated, within six months you should have things settled and develop a routine.

Getting a colostomy was a miracle for me. I intend to advise all quadriplegics that after a certain number of years they should talk to their doctor about proactively getting a colostomy before their bowels stop working. I am a happy bag lady!

“Bottom line, I have my life back and I’m only looking forward.” – Josh Nelson

Ostomies are Life-Savers – and Coloplast is proud to be a part of helping spread the word on Saturday, October 5th for Ostomy Awareness Day!

For many people, it’s not often that intimate things – like an ostomy – are discussed openly … but at Coloplast, our passion centers around hearing real-life stories from people with intimate healthcare needs. As we listen, we strive to uncover unmet needs and respond with innovative product solutions to make life easier for people living with an ostomy. We bring this passion to listen, respond, and make life easier to work every day – and we’re proud to stand with the ostomy community in raising awareness of the amazing resilience of people living with an ostomy.

Do you live in the Twin Cities? Lace up your shoes and join our team for the Virtual Run for Resilience!

You, your family, friends, and pets are invited to join Coloplast employees, ostomates in the area, and their families for a “virtual 5K” run/walk/roll along the Mississippi River in Minneapolis, MN – starting at our US corporate office. Attendees should plan to arrive by 10:00 AM to gear up for the race. There will be groups of people both running and walking, so you can move at the pace at which you are most comfortable!

Before the run/walk/roll begins, we will have two guest speakers. Kiza Olson and Josh Nelson, who both have ostomies, will tell their stories, including how an ostomy was a lifesaver for them. Watch this short video from Josh* encouraging you to join us:

This event is open to anyone who wants to help support ostomy awareness. Looking for more information? Check out our Facebook event page. Feel free to join our team and sign up for the event at no cost on the Coloplast team page.

To help you prepare for the run/walk, brush up on some tips on sports and exercise with an ostomy on our Coloplast® Care site.

Don’t live in Minneapolis?

Visit the Coloplast booth at one of the 8 Run for Resilience events nationwide!

If you plan to participate at one of the run/walks held nationwide, make sure to stop by the Coloplast table and meet our local representative! We’ll be handing out free temporary tattoos so you can wear the “Ostomies Are Life-Savers” slogan proudly on your sleeve.

We’re proud to be a part of the effort to build awareness that ostomies are life-savers – and a key contributor to really feeling like you can “have your life back” is finding the right product fit. As bodies change over time – aging, gaining or losing weight, getting new scars or a hernia – it’s important to check that you still have the right fit. That’s why we developed BodyCheck: in 8 easy steps, this online tool will identify the best combination of product(s) to provide a secure fit to your individual body profile. At our booth, we’ll have information on using BodyCheck to ensure you still have a secure fit – and a free magnet reminding you to check your body as things change.

Take a selfie!

If you get the temporary tattoo or magnet –  we’d love to see how you display them! Snap a picture and share with us on social media with the hashtags #OstomyAwarenessDay #OstomiesAreLifeSavers  #RunforResilience

 

*Josh is a SenSura Mio user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

Editor’s Note: this blog post was provided by Coloplast Corp, a Gold Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization

National Ostomy Awareness Day is celebrated this year in the US on Saturday, October 5, 2019. At Hollister Incorporated, we are proud to stand with the broader ostomy community to show how we are #AllinforOstomy. We invite everyone to join together in spreading awareness or engaging in activities that can impact the day-to-day lives of people living with ostomies and their caregivers.

Participate in a Run for Resilience Ostomy 5K Event!

For some, the best way to celebrate and support ostomy awareness is to get out and enjoy the day, even better to do so together with the people we care about. In that spirit, we celebrate Ostomy Awareness Day again this year by supporting United Ostomy Associations of America (UOAA) as the exclusive Diamond Sponsor of the annual Run for Resilience Ostomy 5K events. The events help increase awareness about ostomy and continent diversion surgery and encourage positive dialogue. Bring family and friends with you to participate in one of these fun events nationwide. Many feature kids’ activities, a DJ, a division for people with ostomies, and awards. Visit ostomy5k.org to find a run near you. While you’re there, stop by the Hollister booth and say hello!

If you can’t make it to one of the live events, you can still participate by registering for a Virtual Walk, Run, or Roll at a location near you. Even a treadmill counts! This year Hollister Associates will participate in a virtual event near our Hollister Incorporated headquarters in Illinois, and at our distribution center in Stuarts Draft, Virginia.

Gearing up to participate in one of these events? Get in the mood with the All in for Ostomy playlist on Spotify.

Show off your Stoma Sticker on Ostomy Awareness Day or Any Day!

By wearing a “stoma” where people can see it, you can start a conversation, raise awareness, and show support for the ostomy community on Ostomy Awareness Day and every day. Place the sticker over your clothes on the lower right or left side between your navel and hip, where ostomies are typically located. Then, take a photo or video and share it on social media with the hashtags #AllinforOstomy and #OstomyAwareness. Because any day is a good day to support and celebrate ostomy awareness, Stoma Stickers are available for order year round! Visit stomasticker.com to order a free educational Stoma Sticker, shipped anywhere in the US.

Visit www.hollister.com/ostomyawareness to learn more!

 

Editor’s Note: this blog post was provided by Hollister Inc. the exclusive Diamond Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization.

It’s up to you. Will ostomy awareness, support and education stay in the shadows this year or touch lives and impact those in your community? Will you celebrate the resilience of people living with an ostomy and fight for those still in need?

If you want this shirt simply sign-up for any walk/run or the virtual option. Must order by Sep. 13 to get your size.

Ostomies are Life-Savers. It’s that simple, and that’s both the Ostomy Awareness Day theme and what will be emblazoned on the t-shirts of those gathering at the Run for Resilience Ostomy 5k awareness events September 28 and October 5 and 12, 2019.

You don’t have to run, or even walk a step, to support these charity events. It’s easy. If you’re not able to come out for an event (or simply like to sleep in) ­– donate to an event near you, or the worldwide virtual 5k event. You can also check out all the other ways to make a difference this Ostomy Awareness Day, Saturday, October 5, 2019.

Consider supporting that person who just had ostomy surgery in the past year and is seeking the confidence to get out in the world again. Attend or donate to the event of a double ostomate like Roxanne Camp, who despite countless surgeries, is still bringing ostomy awareness with a smile to her community in Arizona in the form of an Ostomy 5k fun run and a picnic open to all.

 

Phil Moyle in Spokane, WA started a fundraiser for this year’s Ostomy5k in Boise.

Start a fundraiser like Phil Moyle of the Inland Northwest Ostomy Support Groups and let your friends and family know why this cause is so close to your heart. Phil was touched by the passion of the Herrett family in Boise. They started a run for their two children who have ostomies in the hope they’ll be able to live in a world that will embrace their differences.

All around the country, those who are seeking empowerment over their health will be gathering with friends and family to walk, run or roll at an event near them or anywhere they want with the virtual 5k option. Most of the attendees typically do not have an ostomy, yet will be out on the streets to support you.  If you’ve never run before– consider this as motivation. The events are all beautiful park locations. Some of the event locations are simple fun runs while others are on a timed and certified courses that attract a handful of serious competitors. Check out www.ostomy5k.org for all the details.

Gather friends, your support group, co-workers or family and host a Virtual Ostomy 5k walk event and fundraiser wherever you want. We’ll send you t-shirts and race bibs and you can send us photos!

Consider starting a couch to 5k group with some friends (It’s easy with an app like this.). Walk with your support group, friends or family anywhere you want by signing up for the worldwide virtual ostomy 5k. We’ll mail you out a t-shirt and a race bib so you can be a real part of this national movement. If you don’t want a shirt, the event is free! 

You could plan on taking a fun trip to Nashville and meet fashion designer and survivor Manny Cuevas who is helping to organize the event there and is hand sewing ostomy pouch covers for top ostomates that complete the run. Run for those who are still battling illness and can’t host a run this year like Stephanie Urzi in New Jersey.

Lucky competitors may get an exclusive pouch cover from designer Manny Cuevas.

Support and donate to events hosted by dedicated ostomy nurses who have volunteered their time for you, such as Lara Leininger and Angela Richardson in North Carolina, Gina Day in Pennsylvania, Misty Edwards in Alabama, Deborah Nelson in Tennessee, and Amber Lords and Jessica Blakeslee in Idaho. They work all day with patients but still want to do more to create awareness in their own communities, and to benefit all people living with an ostomy in the United States.

UOAA’s national advocacy, trusted resources, and support groups nationwide help turn around countless lives. Event proceeds benefit UOAA as this is our major fundraiser.

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Thanks to our national sponsors who help offset the costs of the events and believe in this mission. They volunteer, have reps, products and information on hand. Exclusive Diamond Sponsor Hollister will have employees in Stuarts Draft, VA that will be running in solidarity. Gold Sponsor Coloplast’s Vincent Faiola, who is also a support group leader, is gathering the ostomy community for an event in Vancouver, WA. Silver Sponsors Byram Healthcare and Colo-Majic are excited to connect with you and support the cause. Bronze Sponsor Safe-n-Simple’s Michele Pitylack and Holly Loos are hosting an event in Michigan and promoting the event nationwide. Bronze sponsors ConvaTec will also be on hand at the events to answer your questions and new sponsor Osto-EZ-Vent is proud to be a part of this event. And thanks so much to our local sponsors who do so much for the community spirit of these events.

Walk or roll because you can. Run if that is your goal. Donate or fundraise if you have the means. Or volunteer at an event near you and cheer on others. We’re sure friends and family have encouraged you to support a charity close to their heart before ­– now may be the time to ask a favor in return. Ostomy awareness simply saves lives, and it needs to start with us, the time is now. Show the world we’re alive and why they should care.

Click Here to Register at an Event Near You

Click Here to Donate or Start a Fundraiser

Click Here for a T-shirt and a Virtual Walk/Run you can do Anywhere

Grammy award-winning recording artist speaks out for ostomy awareness and support

The emotions all came flowing back. While touring at a radio station earlier this year in Louisville, Kentucky recording artist Damon Little heard of the tragic suicide of a 10-year-old boy Seven Bridges. There was a part of his own story that he had just recently felt compelled to reveal for the first time ­– he too had lived with a colostomy as Seven once did.

Grammy-winning recording artist Damon Little had an ostomy as a child and is now part of an outreach effort with UOAA to promote ostomy education and awareness.

“This boy’s story was my story. The feelings of isolation and pain of endless surgeries” says Little who had an ostomy for most of his youth until a reversal at age thirteen. Though many young ostomates are now encouraged to be active his teachers and parents at the time sheltered him from sports and other children, because of his ostomy.

Earlier in the year while working on a new inspirational song “Be Alright,” he could not shake the feeling that something was missing. Still unaware about Seven’s death he was inspired to record a testimony about his past on the track. It felt like it was a natural fit for the song’s powerful message.

After learning of Seven’s death the song seemed like fate and Little also wanted to do more to help people living with an ostomy. He and his wife reached out to  United Ostomy Associations of America (UOAA) to see what could be done to help the next person in need.

Ostomy Outreach

UOAA is now working with Little to spread the news of our 300 affiliated support groups, national advocacy program, and free educational resources available to all those seeking ostomy information and support. He is speaking out live on radio interviews and on stage at events around the country. His story is already touching people and compelling them to do more.

At an appearance in Elizabeth City, North Carolina a hospital caseworker asked for UOAA brochures to share with patients and a man living with an ostomy who was at the gathering bravely spoke out about his story and in support of UOAA’s mission.

Though he is best known for his Gospel music, Little has also agreed to record a non-denominational uplifting version of his song “Be Alright.” We hope this speaks to all those who may be struggling with their ostomy or other issues regardless of their background. Look for that to be released in a few weeks with a special shout-out to UOAA.

A Famous Musical Family

Little, a native of Baltimore, got started singing when he was just five-year-old with his family group consisting of his brothers and cousins. His first recording was with his uncle the legendary Clarence Fountain of The Blind Boys of Alabama. The Blind Boys of Alabama have been celebrated around the world and played for three U.S. Presidents.

In his own music career Little has spent weeks on the top 10 gospel charts and top 30 on urban AC billboard. He has traveled with numerous national and international tours performing for audiences as large as 300,000 people.

Little’s sound has been compared to the legendary Al Green and the late Philippe Wynne, the Spinners former lead singer.

Fighting Stigmas

Little has found that the volunteers of UOAA and many in the ostomy community are equally shaken by the suicide of young Seven and want to do much more to help end existing ostomy stigmas.

By joining forces with UOAA Little wants the public to know that ostomy or continent diversion surgery can occur at any age, and that often the emotional scars take the longest to heal. “Most people with an ostomy who connect to the support and education they need live full, active, and healthy lives,” says UOAA President Susan Burns, a longtime ostomate. “Many people don’t realize that with some help they can swim, play sports, work, be intimate, and fully embrace a second lease on life.”

Little is partnering with UOAA to reach out to communities everywhere, particularly underserved populations to dispel ostomy stigmas and connect people in need with support and educational resources. He’ll also serve as UOAA’s Ostomy Awareness Day Champion on October 5, 2019. Events include the Run for Resilience Ostomy 5k that will raise awareness in nine U.S. cities.

Most importantly, Damon Little wants you to know it will “Be Alright” and to embrace the life ostomy surgery has allowed you to have.

Connect with Damon Little:

Facebook @IamDamonLittle

Twitter: @IamDamonLittle

Instagram: @IamDamonLittle

Youtube: Damon Little Music

Ostomy Support, Love and Giving Back

By Jeanine Gleba, UOAA Advocacy Manager

On November 11th the United States observes Veterans Day to honor all those who have served in the United States Armed Forces. This year at UOAA I’d like to shine a light on two Veterans with ostomies who now continue to serve as volunteer advocates with UOAA in the Advocacy Network. Most recently, they were able to raise ostomy awareness in the state of Texas by garnering not one, not two, but three proclamations from their town, County and the Governor!  

Dan Shockley is an Operation Desert Storm; Operation Enduring Freedom (OEF) and Operation Iraqi Freedom (OIF) veteran.  He served for 22 years in “the world’s greatest Navy” onboard 7 different ships. His last tour before retiring was after 9-11 on the ground in Bahrain in direct support of OEF and OIF between September 2001 – September 2003. In 2012 after his first and only colonoscopy revealed 100 polyps embedded in his colon, rectum and anus, he was diagnosed with a rare gene mutation known as attenuated familial adenomatous polyposis (AFAP). In July 2012 at 51 years of age, he had successful ileostomy surgery at Tripler Army Medical Center, Hawaii.

 Donna Desoto, Dan’s girlfriend, began her Military career in 1976. She was in the last basic training class of The Women’s Army Corps (WACS). She also attended the Medical Lab Assistant school at the Academy of Health Sciences at Ft. Sam Houston, TX. She was then chosen to join the medical research team at Headquarter Co Troop Command at Brook Army Medical Center under the Clinical Investigation Services. She co-invented a vaccine for burn patients and received The Army Commendation Medal for meritorious service of her research between 1976 to 1979.  While serving in the military she was diagnosed with Chronic Interstitial Cystitis. After over a year of trying to save her bladder with an experimental drug instilled in her bladder surgically, she had urostomy surgery. She also had a stroke prior to that due to an allergic reaction to an unknown medicine. It took 25 plus surgeries before removing her bladder. She was in the hospital the whole time leading up to the final removal of her bladder and then was medically retired in 1981.

I recently caught up with them and asked the following questions:

UOAA:          How did you two meet and become a couple?

Dan:            Donna and I met on the Singles with Stomas Facebook group in the summer of 2016. We commented on each other’s posts. In the following months we developed a friendship based on our commonalities. We’re both retired military, left-handed, interested in medical research, and of Scottish descent. In May 2018 she called me suggesting it was time for us to get together. At the end of July I relocated to South Texas to be with her.

UOAA:             Such a great story!

UOAA:          How did you get involved in UOAA?

Dan:           My involvement began as an inpatient at Tripler Army Medical Center, Hawaii, after my surgery. Tripler’s WOC nurse shared with me information about United Ostomy Associations of America. At that point I was eager to share my diagnosis and story with others and UOAA and become an advocate.

UOAA:            It’s so important for people to realize that they can make an impact when they do share their story whether it is inspiring someone else or making the journey a little easier for someone questioning life with an ostomy.  There is also a big need in our advocacy efforts especially legislatively because elected officials want to help their constituents who the issues directly affect and hear their stories.  We can raise so much more awareness when we grow in numbers.

UOAA:           Why do you advocate for ostomates?

Dan:               My life’s focus as a colon cancer warrior, having a rare gene mutation and an ostomy is to be a source for the importance of early detection. It’s also important to me to show that life can go on having an ostomy. I consider my diagnosis a challenge rather than obstacle. That said, there’s an old cliche you can lead a horse to water, however you can’t make it drink. I’ve heard there is a way to influence the horse to drink when it reaches the watering hole. Feed it salt along the way. Hopefully my story will serve as a source of salt for those who read it.

Donna:         The main reason I feel the importance of advocating for ostomates is because I feel increasing awareness is very important and other more well known causes get lots of awareness whereas I see that many people have little or no knowledge of what an ostomy is.  Also, I see a need legislatively for ostomates in areas that should be addressed especially one area I have experienced is the usage of restrooms and other public issues.

UOAA: Why is it important for people to get involved?

Dan:        Projecting a positive outlook is important to me. Having an ostomy is a lifesaving surgery. By sending out positive vibes I receive them back tenfold. I may have been diagnosed with AFAP but my AFAP mantra is: Always Forge Ahead with a Purpose!

Donna:   Being involved with UOAA and my other volunteer efforts (Donna founded Sav-Baby Inc.) has helped me to take my mind and focus away from my medical challenges and pain and allows me the opportunity to reach out to those struggling with their current or ongoing medical issues. Not only can I hopefully be an inspiration to others it is also an opportunity to make new friends and encourage them to get involved in some way such as a being a friend to someone else or becoming an advocate or volunteer.

UOAA:          And you and Dan certainly became friends! One of the most significant things that UOAA does is provide support through our Affiliated Support Groups.  It is one of the top reasons that we get calls into our 800 information line.  People are looking for emotional support and to meet others going through similar experiences so they can learn from each other.

Dan:       I’ve been a member of UOAA support groups in Eagle, Idaho; Carmichael, California, Honolulu, Hawaii and now both of us just started attending meetings at the South Texas Ostomy group in San Antonio, TX.

UOAA:         Do you talk about your ostomy and/or military experience with others?

Dan:        I share my ostomy and military experiences every opportunity that presents itself. As a “live case presentation” for the medical community and ostomy groups I feel it is important to show life can go on as if nothing happened. Being a source of inspiration and encouragement is important to me. It’s been said we’re unable to change the wind. However, we can adjust our sails. After 22 years in the Navy I’m good at adjusting. That’s my story and I’m sticking to it!

Donna:       I talk freely with others about my ostomy. I am no longer ashamed or embarrassed.  I am so proud to be a Canadian who became a US Veteran and citizen. I participate in both military and ostomy groups.  I try my hardest not to let my ostomy limit anything I choose to do in my life.

UOAA:            What does Veterans Day mean to you?

Dan:        Veterans Day is when I reflect on and recognize those who made the ultimate sacrifice to defend our 13 stripes and 50 stars. My father served in the Army during WWII, two of my uncle’s served in the Navy and 1 uncle served in the Marines during the Korean War. My brother served in the Air Force during the Vietnam conflict.

Donna:       Veterans Day is a very emotional day for me for so many reasons. My thoughts and prayers go out to all our Sisters and Brothers who lost their lives for our freedom, as well as those currently serving, those now retired and all of their loved ones.  The real special part of Veterans Day for me is that I was born in Canada. After college I decided to join the US Army and officially become a US citizen. I was so proud the day I became a US citizen and that same proudness was felt when I took my path to become a volunteer member of the US Army.  When my two adopted children were little and my little girl that I saved from abandonment was old enough I would tell them that I was “an Alien who wore combat boots”. They loved to share that story with their friends. My Uncle enlisted in the British Army and his submarine was lost during the war. His mother, my Grandmother, who brought me up in the United States was so sad on Veterans Day as it was forever painful losing her oldest son.

UOAA:             You are both a reminder to me of John F. Kennedy’s inaugural speech, when he said the infamous words, “Ask not what your country can do for you, ask what you can do for your country.”  You both embody “service”.

As Advocacy Manager I am in the unique position to not only hear many amazing ostomy stories of resilience but also to watch many passionate and fascinating people as they take action and work together to achieve a common good cause for our community.  It is truly an honor and a privilege for me to work alongside such dedicated, impressive and patriotic volunteers like Dan and Donna.

Thank you to all Veterans who have or are actively serving America! Happy Veterans Day!

“Here’s my UOAA acronym:” ~ D. Shockley

                                                      Understand (your diagnosis)

                                                      Overcome (adversity)

                                                      Attitude = 100%

                                                      Adapt (to your lifestyle as an ostomate)