Tag Archive for: run for resilience

Resilience Story: Brittany Jackamonis

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Health and wellness have always been a big part of my life’s journey. I grew up running track and cheerleading, and then found a new love in CrossFit in 2012, which really took fitness to another level for me. As a wife, mom, minister, and police officer, I was living out some of my healthiest and best years.

But life took a sudden turn in September 2022. Severe stomach pain dropped me to my knees. It was discovered that I had ulcerative colitis; a chronic inflammatory bowel disease that causes inflammation and ulcers in your colon and rectum. I was already at the level of what doctors refer to as a Mayo 3, most severe.

Life spiraled quickly: instant dramatic weight loss, six colonoscopies later, multiple hospital visits and stays, various CT scans, lengthy infusion sessions, infections throughout the colon, in and out of a restroom multiple times a day; my quality of life no longer existed. I suffered painfully, while still trying to show up for my family, career, and ministry.

Talks about an ostomy bag started very early into my diagnosis, but I just couldn’t wrap my mind around having a bag attached to my stomach. I endured pain and suffering but surgery eventually had to happen; life simply couldn’t carry on the way it was going for me.

Then came the ostomy in January 2026! And I can actually say this with pure excitement! Because although I had to have my entire colon removed and a piece of my small intestine (stoma) flipped to the outside of my stomach, my quality of life is back! My fitness is back! My health is back! I’m fully back for my family, my career, and ministry!

My ostomy gave me the option of restoring my health, and has shown me a new level of resilience. It doesn’t define who I am, but proves strength, perseverance, and empowerment!

Working in law enforcement with an ostomy is pretty unique. When I first returned to work after  two months off, I remember being excited and anxious. I was excited to be feeling so much better and returning to my Team, but anxious to see how wearing my gear around my waist would feel on my bag. I remember going to the shooting range for practice just to feel how different shooting positions and pulling from my holster felt. All has been extremely normal and well for me back on duty! It’s been 18 years in law enforcement, and I can still do everything the same!

I wanted a fun active way to bring those with ostomies together to be bold and build confidence.

I learned about UOAA by doing research online a few months after my surgery. I knew I wanted to do something big in the ostomy community but I didn’t want to reinvent the wheel. I found UOAA and the Ostomy 5Ks that take place around the Nation, and I was all in! I knew I had to bring this type of energy and awareness to South Carolina.”

I wanted a fun active way to bring those with ostomies together to be bold and build confidence. I noticed right away that many people with an ostomy were ashamed and lacked confidence. I knew it was time for a confidence boost! I also want a way for the community to show up to support and become more aware of what ostomy bags are and how much they truly give life back. I’m excited to host the Inaugural Run for Resilience Ostomy 5k in Columbia, SC on  Saturday, October 10th in celebration Ostomy Awareness Day at the beautiful Sesquicentennial State Park! 

I’m also happy to be back at my favorite place, Carolina CrossFit It is a breath of fresh air! I lift and move just fine. If we have burpees, wall walks, bar muscle ups (those movements that require you to have pressure near the stoma area) I know when and how to modify. I limit myself little to none when it comes to fitness. An ostomy bag doesn’t stop my CrossFit workouts. Put a barbell in my hand any day, and we are taking it for a nice spin!

My advice is (after being cleared from your doctor and discussing parastomal hernia risk), don’t limit yourself. Know what works for you, stay hydrated, secure your stoma and ostomy bag with a fitness wrap, and put in the work. You’re not immobile, you’re just uniquely you!

Every ostomate’s journey is different, but one thing is commonly shared: We are resilient!

 

Celebrate your resilience and participate in a Run for Resilience Ostomy 5k event near you or host your own Virtual Ostomy 5k event wherever you are. Donate in honor of Brittany’s resilience or learn more about her Ostomy 5k event in South Carolina!

Resilience Story: Matt Marra

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A couple years ago, I wasn’t thinking much about my health. I was a little overweight, but nothing alarming. Life was busy working full-time while chasing around two wild but wonderful kids under five.

Then in November 2023, everything changed. I started bleeding when I used the bathroom. Over time, the urgency and frequency increased, and I found myself going 6–8 times a day. After bouncing between urgent care, my primary doctor, and a GI specialist, I was diagnosed with ulcerative colitis in January 2024.

Those three months waiting for a diagnosis were a mental warzone. Googling symptoms like “dark red blood in stool” returns a fun list: hemorrhoids, IBD, and cancer. While I was relieved to finally have a diagnosis, IBD wasn’t something I ever imagined dealing with.

At first, I managed with diet. I avoided trigger foods and even used ChatGPT to check what I could safely eat when dining out. But during a vacation in February I flared badly. What was supposed to be a beautiful cruise celebrating my brother’s and sister-in-law’s marriage ended up being an endless visit to excursions on the toilet and lying in bed. On the flight home, I had to abandon my 3-year-old in his seat four separate times to rush to the bathroom. It was a rude awakening to how terrible ulcerative colitis and iBD in general could be, and created a new fear constantly in the back of my mind that the next thing I eat or do may make me sick for weeks at a time. Things did not get better when we got back.

On Monday, March 4th, I went to the ER thinking I’d get some medication and go home. Instead, I was admitted. “Steroids always help! You’ll be out in a few days,” they said. But by the weekend, I was even worse.

Then I tried biologics. “Infusions never fail,” they told me about 30 minutes before I failed my first one.

After multiple failed treatments, and now two weeks into my hospital stay, I was transferred overnight to a hospital in the city. Surgery was mentioned early on as a worst-case scenario, just in case. My brother had questions for the surgical team at that time, but I brushed them off: “We’re so far from that! There’s no way it’s going to happen.”

Flash forward to the third week. I was exhausted, nauseated, and in pain. Surgery stopped being the last resort. I wanted it. I told the surgeon I wished the decision would be made for me, because mentally, I wasn’t strong enough to choose that road on my own.

On Friday, March 22nd, after continued lack of progress, my care team made the call: it was time. My colon had perforated. I was rushed into emergency surgery for a total colectomy. I woke up with an ileostomy and a new chapter ahead.

Adjusting to a stoma was overwhelming. Seeing a piece of your intestine, or stoma, outside your body doesn’t exactly quickly become “normal.” I hadn’t even realized, 30+ years into life, that people pooped out of their stomachs. My wife and I were told we were brave during ostomy training, since many people can’t even bear to look at themselves post-surgery. I didn’t feel brave, just dazed. But I found ways, through products and routine, to feel okay in my own skin.

At the 5k, I met people who had lived with ostomies for years, people who got it. That sense of community grounded me. Seeing others thrive helped me believe I could, too.

Matt Marra showing his ostomy belt while running the Run for Resilience Ostomy 5k in Illinois, his first year after surgery. Photo by Anne Marra.

Discovering My Resilience

Managing leaks, mastering appliance changes, showering without disaster, sleeping through the night without anxiety, all of it took time. There were 3 a.m. blowouts. There were tears. There was grief and anger.

But I adapted. The stoma became a part of me. Most of the time, I didn’t notice it — and neither did anyone else. I could eat again. I didn’t obsess over bathroom access. I had energy. I had my life back.

And most importantly — my ostomy saved my life.

I spent 30 nights in the hospital. On the worst days, walking three laps around the floor felt like running a marathon. I told myself: just make it to the next milestone. So when I saw the UOAA’s 2024 Run for Resilience Ostomy 5k in Downers Grove, Illinois, I signed up, not just to raise awareness, but to prove something to myself.

Crossing that finish line in just my second-ever 5k was emotional. It felt like a full-circle moment. I was back. Maybe not the same. But just as strong.

Support made all the difference. My wife Anne helped with bag changes, middle-of-the-night cleanups, and the emotional weight of it all. My brothers, Nick and Joe, made sure I was never alone during those long hospital nights.

At the 5k, I met people who had lived with ostomies for years — people who got it. That sense of community grounded me. Seeing others thrive helped me believe I could, too.

From March 2024 to June 2025, I lived a very full life with my ostomy. I traveled to weddings in Mexico and Colorado. I climbed mountains. I flew to Austria and Slovakia for a week-long work trip. Ten-hour flights used to terrify me. Now? No problem. My ostomy didn’t hold me back. If anything, it gave me freedom.

I continue to push myself, no matter the challenges. To show my kids what resilience means.

To every UC patient I’ve talked to about surgery: no, I don’t get a commission. I just know what my ostomy did for me. How UC wrecked my life, and how surgery gave me peace, physically and mentally. I know my path was fast: diagnosis to surgery in five months. But in some ways, I’m grateful. I didn’t suffer for years. I got my life back sooner. For as mentally draining as it was to constantly worry about my health, what I was eating, and where the closest bathroom were – I can only imagine what that is like for those that have been through this for decades battling their chronic IBD.

My ostomy was temporary, though it felt like a permanent part of me. I had two more surgeries, in March and June 2025, to transition to a J-pouch. The stoma is gone, but the scar remains. A battle scar. A reminder. And something I’ll always be thankful for.

For most of my time with an ostomy, I asked: “Why me?” What were the odds? Could I have avoided this if one treatment had worked?

But near the end of my journey, that shifted. I started thinking: “Wow… I’m glad I had an ostomy.” Because it taught me I could not just survive with it but that I could live a full life with it. Looking back on those early conversations in the hospital, when the idea of pooping out of your stomach felt surreal, I never imagined I’d feel that way just one year later.

I continue to push myself, no matter the challenges. To show my kids what resilience means. That no matter what knocks you down, you get back up.

And this October, I’ll lace up again for the 2025 Run for Resilience for yet another milestone. Another chance to prove I’m still standing and thriving.

 

 

Visit Matt’s Run for Resilience fundraiser at https://runsignup.com/marra to support the nonprofit programs and services of UOAA. To learn more or sign-up for a Run for Resilience Ostomy 5k near you or virtually visit ostomy.org/5k. 

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!

 

 

Resilience Story: Chris Seyler

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Chris Seyler joined the Phoenix (Arizona) Ostomy Support Groups during COVID times and met up with the group at a park ostomy meeting. Recovering from long term illness and recent surgery, he was ready to find his way back to normal life.

Chris was born in the Phoenix area. While growing up his parents taught him to be active in a team sport, exercise and stay away from bad habits in life.  Chris played basketball and ran track, being nominated for all state in both sports. Receiving a basketball scholarship, and motivated by teachers and coaches, Chris majored in Kinesiology and Science from The Master’s University and became a teacher.

While in college Chris met his wife Colleen, also a teacher. Their son, Nathan, shares his parents’ passion for teaching and athletics and was selected to be in a Disney running movie, MacFarland, USA. Father-Son teamed up to coach school teams in Track and Basketball, winning state Championships.

Following his passion, and inspired by his son, Chris started competing in more events. From 2003 to 2017 he competed in 5ks, 10ks, half and full marathons, triathlons, Ironman, and obstacle racing. It was after AZ IRONMAN 2013 that Chris was diagnosed with ulcerative colitis and started losing weight in 2017.  The next couple of years were tough; in and out of the hospitals for nutrition and dehydration and battling a bacterium in his colon.  Various medications and infusions did not help with easing the illness and emergency surgery was performed in 2019.

Weak from illness and surgery Chris retired from his full-time teaching job and put his running shoes aside.

As time went on and recovery was underway, Chris set a goal to run a 5k. Not able to keep up with his wife, she encouraged him to walk, jog, and run. Hydration was always important as part of Chris’ races, but not having a colon taught him he had to be even more diligent about it.  During Run for Resilience Ostomy 5k 2021, Colleen ran the race. Chris walked and rested with his dog…but he finished…and his passion was returning! While training he worked on improving balance and strength and was able to jog/run at the Arizona Run for Resilience Ostomy 5k in 2022. Chris will be participating this year on the Arizona Virtual Race Team as part of the 2023 Run for Resilience Virtual Ostomy 5k on October 7th.

Passionate about life after ostomy surgery; Chris is teaching part-time, is the Phoenix Ostomy Group Secretary and the Meeting Leader at HH Cowden Center ostomy meetings.

To learn more or sign-up for the Run for Resilience Ostomy 5k visit ostomy.org/5k. You can donate to UOAA fundraisers by Chris and other resilient participants here. 

Resilience Story: Maria Sandoval

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Hi, my name is Maria Sandoval. I wanted to come on here and share my story with you. You may ask, why am I putting the Run for Resilience Ostomy 5k run/walk/roll together in my community? Because it has given me my life back.

In November of 2022 I had surgery to get an ostomy because my ulcerative colitis was getting worse. I was diagnosed with ulcerative colitis in 2012. Ulcerative colitis is an inflammatory bowel disease (IBD) that causes inflammation and ulcers (sores) in your digestive tract. Ulcerative Colitis affects the innermost lining of your large intestine, also called the colon, and rectum. In most people, symptoms usually develop over time, rather than suddenly.

In my case my symptoms did develop over time and things got worse in 2020. The medication I was put on was no longer working. My body was shutting down and therefore my doctor recommended colorectal surgery.

It’s important to me to shine light on ostomies and to give hope to my ostomy community in Arkansas and show them that they are not alone.

Me during a Remicade infusion for ulcerative colitis before making the choice to have ostomy surgery.

I had no idea what this surgery was nor did I know anyone that had undergone this type of surgery. The fear of the unknown put me off from having this done. I was fortunate to have a great surgeon with a great team who gave me all the information I could ask for. They were patient with me, and so understanding of all my feelings. They answered my questions and addressed my concerns. Having that information and having faith, helped me make the decision to have this surgery. I had hope for the first time since being diagnosed with ulcerative colitis.

Currently, it’s 2023 and I am 33 and I have my life back. For the first time in a decade I can honestly say I feel safe in my body. I have energy, I feel empowered and I’m here to share my story. Making the decision to have my colon removed and have an ostomy was the best thing I could have done for myself.

I am here to stop the stigma around having an Ostomy. I am here to highlight the positives of having one and how it has impacted my life.

I learned about UOAA through social media. I went to ostomy.org to look up what UOAA is all about and saw that they had a 5k run for Ostomy Awareness Day every October. I have always loved to run in races and thought how cool it would be if I could bring this run to my area. I contacted UOAA to see if they would like to have Northwest Arkansas be part of their Run for Resilience Ostomy 5k and they were more than happy to do so.

I was so proud to have finished the race. I wasn’t racing for time, rather, I was racing for me. My ostomy gave me back my confidence in running.

Me 19 days after my Ostomy Surgery.

The Run for Resilience Ostomy 5k is the major fundraiser for all the great things UOAA does. UOAA has great resources to help with recovery and one of those resources I happened to stumble upon is their support group finder. UOAA does a great job of locating support groups and WOC nurses in your area. Forever grateful for that! I also use their site for educational information, self-advocacy checklists, and finding events they have going on, like the Run for the Resilience Ostomy 5k and their National Conference.

By hosting and taking part in the Run for Resilience I hope to spread awareness on ostomies and continent diversion surgery. It’s important to me to shine light on ostomies and to give hope to my ostomy community in Arkansas and show them that they are not alone. That they have a community to go to.

My mother is helping me host our first event. I am so grateful to have my family help me through this journey. My husband and mother were my caregivers before and after surgery. Making the decision to have surgery was a difficult one, but they both helped me through it.

I hope everyone no matter of where they are out takes part in a Run for Resilience event near them or the Worldwide Virtual Ostomy 5k. I love sharing photos like the one here of a half-marathon I ran five months post-op! Everyone should go at their own pace and talk to their doctor, but for me I think it was one month after my ostomy surgery when I started to train for the half marathon. I took it pretty slow. I began by walking a mile and slowly worked my way up to a jog. By month four I was feeling great and feeling like my old self. I was so proud to have finished the race. I wasn’t racing for time, rather, I was racing for me. My ostomy gave me back my confidence in running.

I would run races here and there before my ostomy surgery. My ulcerative colitis would make it difficult at times to run, but when it was in remission I was happy to get back to running. I have always enjoyed running because it was the one thing I could control in my life. My ostomy gave that back to me. Ostomies are truly life savers!

To sign-up or donate to a Run for Resilience Ostomy 5k event near you visit ostomy.org/5k. Support or learn more about Maria’s event, the Rogers, Arkansas Ostomy 5k and follow her 5k on Instagram.

Celebrate and Support Ostomy Resilience

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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.

Keep pushing forward – Ostomy Awareness Day 2020

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It can be hard to talk openly about living with an ostomy, but at Coloplast, our mission guides us in our everyday work and our employees embody a passion around hearing real-life stories from people with intimate healthcare needs. We have gotten to know Joel through his story, his resilience to keep fighting, and we are proud to stand with the ostomy community in raising awareness of ALL people living with an ostomy.

Join us, Joel and ostomates across the nation in participating in the Virtual Run for Resilience for the 10th Anniversary of Ostomy Awareness Day (OAD) on Saturday, October 03, 2020.

Joel’s Story

I was diagnosed with Crohn’s disease at 17 years old. Nine years later I had a very bad flare up that put me in the hospital fighting for my life. When the doctors first told me that the best option was to have ileostomy surgery, I was so upset but I was in so much pain I was hoping that it would make me feel better. When I finally woke up from surgery and realized I had an ileostomy – I cried. I didn’t even want to look at it. It took some time, but I got used to it, my stoma saved my life.

After surgery, the scariest thing for me was not knowing how I was going to move forward in life with an ileostomy. As soon as I got out the hospital, I began to work out every day, even if it was for 25-30 minutes. In 6 months, I was able to build my strength up enough to complete and graduate an intense 4-month police academy. Today, I continue to do what I love and recently completed my personal training certificate.

I am telling my story to tell you that you should never give up on something – even if it seems impossible. Stay strong, stay positive and keep pushing forward!

I am excited to walk, run with you all on Ostomy Awareness Day for the Run for Resilience and hope you will join in with me! I created this video, “Tips on Running with an Ostomy” for you all. I am always looking to connect, and support others so feel free to reach out to me if you need help, want to chat, or just need some support. You can find me on Instagram at @crohnically.fit

Join us for the Run for Resilience

Having an ostomy should not hold you back from participating in the run/walk. Our Coloplast® Care team is here to support you if you want to chat, just give us a call at 1-877-858-2656. We also have resources on our website on sports and exercise.

Coloplast is proud to be a part of the effort to build awareness that ostomies are lifesavers, visit our website to request a free sticker for OAD and join our contest for an opportunity to win some swag! We can’t wait to run/walk with you on October 03! Make sure to follow us on Instagram @coloplast.us for updates leading up to the event!

 

*Joel is a Coloplast product 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

 

Top 10 Ways to Raise Ostomy Awareness

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A Decade of Shining a Positive Light on Lifesaving Ostomy Surgery

By Jeanine Gleba, UOAA Advocacy Manager

“Ostomates Unite and Help Place The Ostomy In A Positive Light! Celebrate UOAA’s Ostomy Awareness Day!”  These were the words that were spread when UOAA announced the first National Ostomy Awareness Day on July 25, 2010. A decade later, UOAA continues to sponsor and celebrate this day annually in the United States by raising awareness about this life-saving surgery and increasing national visibility of those living with ostomies. Starting in 2014, and all subsequent years, UOAA has been celebrating Ostomy Awareness Day on the first Saturday of October, which coincides with World Ostomy Day every three years. This year National Ostomy Awareness Day will be held on Saturday, October 3, 2020. 

The idea for an awareness day was originally suggested by Ally Bain, who worked with UOAA as a summer intern in 2010. (Flash forward, this is the same Ally instrumental for the Restroom Access Act (aka Ally’s Law).  The awareness day began as an experiment in social media to see what kind of grassroots support they could get for ostomy recognition. UOAA sent out a request on social media asking all followers to show their allegiance to the cause by changing their online status to the slogan above and make their profile picture UOAAs logo.  The immediate response was so strong that they were also contacted by friends at Talkin’ Bout Guts, to host a 24-hour live podcast in honor of ostomy awareness. Thousands participated that year.

In recent years, UOAA has also named an Ostomy Awareness Day Champion. This year’s champion is Robin Brown, pageant winner Mrs. Washington, who uses her stage platform to raise awareness for ostomy surgery “all in the hopes that it can be a light for someone stumbling in the darkness”.  Her ostomy story and journey from farm girl to the title of Mrs. Washington World America is inspiring. Watch her special video message for Ostomy Awareness Day!

Over the years, celebrations have been centered around several different themes including Bouncing Back into Life, Navigate the Journey Together, Speaking Out Changes Lives and, most recently, Ostomies Are Life-Savers.

To commemorate the 10th anniversary, here are 10 ways you can join the movement to raise ostomy awareness this year:

  1. Help shine a positive light on ostomy surgery and go “live” on your own at 7:00PM EDT on October 3rd with people all across the United States. Hit the “live” button on your personal social media accounts (Facebook, Instagram or TikTok) to shine a light on yourself and tell everyone how your ostomy saved your life or that of a loved one. If you are a medical professional, share how your work helps save lives. 
  2. Participate in our 7th annual Run for Resilience Ostomy 5k. This year our local Ostomy 5k events will be held virtually along with our annual worldwide virtual Run/Walk, so you can walk or run in your favorite place or at home. Visit www.ostomy5k.org to register or donate for one of these events. You can also join UOAA’s “United Advocates Smashing Stigma” team too!
  3. Create a fundraising team through one of our Ostomy 5k events and challenge your family, friends, Affiliated Support Group members, colleagues and coworkers to raise ostomy awareness and funds for a good cause! Have your teammates share the team campaign and see who can get the most donations. Better yet, ask your employer to match any donations raised! 
  4. Make a donation to the “Ostomy Awareness Fund” as a tribute to the 10th anniversary. Donate a minimum of $30 and receive a special bandana with the “Ostomies Are Life-Savers” graphic image.   These bandanas are also a great pet accessory.  Share a photo with UOAA of your pet raising ostomy awareness!
  5. Participate in some of the events we have planned with partners such as the Facebook Live Event that will be co-hosted with Crohn’s and Colitis Foundation on October 3rd. 
  6. Raise awareness and spread the message that ostomies are life-savers using our infographic. We encourage you to share, post or print it wherever possible. 
  7. Our Operation Ostomy – A Life Saver campaign continues to spread the message that we are saving lives one ostomy at a time. Please use our 10th Anniversary Ostomy Awareness Day logo for your profile picture on your social media accounts. Use the hashtags:  #OstomiesAreLifesavers #OstomyDay2020 and tag UOAA on Facebook @uoaainc  Instagram @uoaa_ or Twitter @uoaa. 
  8. Get your Federal, State or Local elected officials to pass a proclamation declaring October 3, 2020 as the 10th anniversary of this special day. Use our sample proclamation or take action here.
  9. Use our sample letter to the editor to share with your local media why ostomies are life-savers.
  10. Aside from Ostomy Awareness Day, October is full of fun fall activities. Carve a pumpkin (or paint) in an ostomy theme. “Shine a light” in your carved pumpkin and raise ostomy awareness in your neighborhood.

For more information and the latest ways to get involved including activities from some of our sponsors visit https://www.ostomy.org/ostomy-awareness-day/.

With your help we will carry on breaking the silence and shining a positive light on what has saved so many lives.

Get Moving for Ostomy Awareness

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The Annual Run for Resilience Ostomy 5k is Coming to You!

 

It’s a good year to celebrate your life. To get outside in the fresh air and get moving again if you can. To speak out and make noise that “Ostomies Are Life-Savers” and not something to be stigmatized or feared.

To keep everyone safe and adhere to any local COVID-19 guidelines all Run for Resilience Ostomy 5k events are being held virtually this year. That just means you can run, walk or roll wherever you want (even inside on a treadmill) and still be a part of Ostomy Awareness Day activities on Saturday, October 3, 2020.

We’ll be celebrating an ostomy community that has shown resilience long before “resilience” became the buzz word of the year. With your registration for the Worldwide Virtual Ostomy 5k, we’ll mail you a race bib, unique 10th Anniversary Ostomy Awareness Day Race T-Shirt and special stickers and sponsor giveaways. If you want to show your state pride and live in Alabama, Arizona, North Carolina, Idaho, Michigan, Pennsylvania, Oregon/Washington please consider supporting your local “Virtual 5k event.” You may have the additional opportunity to pick-up a race bag along with the t-shirt and giveaways at a safe location organized by the local race directors. (MI Run participants T-Shirts, race bags and materials will be mailed.)

You don’t have to be a runner or walker to support these charity events. This event has traditionally been a critical fundraiser for UOAA and the advocacy, resources, and educational materials provided for anyone in need of ostomy or continent diversion surgery. The canceling of in-person events will be a fundraising challenge we’ll need help to overcome. 

Please consider donating or starting a fundraiser like Catherine Salisbury Catherine shared her inspiring story on the fundraising page she created on the Virtual Run Sign-Up website.  

I was diagnosed with a hereditary colon cancer disease, Familial Adenomatous Polyposis (FAP), in 2015. This diagnosis both saved and drastically changed my life. In 2016 I had a total proctocolectomy surgery with a temporary ostomy for three and a half months.  In 2019, desmoid tumors were constricting the blood flow to my j-pouch so I had to have it removed and had a permanent end-loop ileostomy created.  It has been an incredibly difficult journey, but I am beyond blessed with an amazing support system. My family and friends have kept me going through this whole crazy journey. I am beyond grateful for them.

I hope to raise money to help other ostomates who do not have the same incredible support team I have. -Catherine Salisbury

You may be surprised by how supportive others will be if you share your story and create a fundraiser. Catherine increased her fundraising goal to $1,000 after the response from her supportive friends and family helped her reach her original goal.

We also have incentive gifts featuring the “Ostomies Are Life-Savers” logo for those who reach goals of $250 and $400 and anyone who donates or raises $30 or more will receive a special bandana for themselves or their pet.

Starting a Group/Team is also a great way to connect with friends and family wherever they live so they can show support for your journey.  Groups of WOC nurses can claim bragging rights for regional participation (the team WOC This Way in Indiana is leading) and co-workers may have fun in challenging other departments. New this year we are excited that supporters of WOCN Society’s Fund the Future program are coming together for the We All Walk Together Team.

UOAA Affiliated Support Groups such as the one in DuPage County, Illinois looks forward to gathering members for a virtual event every year and are forging ahead with a team and fundraiser even as they anticipate COVID restrictions will not enable them to all meet up together at their usual park location. The year’s Exclusive Diamond Sponsor of the Ostomy 5k, Hollister Incorporated, is also planning another employee-wide event and we expect to hear about other sponsor events soon.

Ostomy Support Group of DuPage County at their Virtual Ostomy 5k in 2018, the group will be back this year with social distancing guidelines in mind.

For some extra motivation consider starting a couch to 5k training group with some friends to get ready and feel great in October. 

Wherever you choose to run or walk be sure to let others know about it to truly raise ostomy awareness. Take pictures of yourself doing your virtual race and email them to us or share/tag them with our public Facebook page. Hashtag your photos or stories #RunforResilience and we may repost on Twitter or Instagram.

We are very grateful for our national sponsors who help offset the costs of the events and believe in this mission. They have stepped up during this difficult year and remain committed to this event and the cause of ostomy awareness. 

Rally your friends, co-workers, and family to the cause of ostomy awareness. People are still choosing death over life with an ostomy and it’s up to you to help show the world what people living with an ostomy are really capable of.  

 

Register for a virtual event near you or for the worldwide Virtual 5k. Sign-up before 9/11/20 and save up to $5. The special price of $17.50 includes a special 10th anniversary of Ostomy Awareness Day technical t-shirt (Michigan is $22.50 shipping included). Worldwide Virtual Event Registration is recommended for those not near one of our local virtual events t-shirt packet pick-up locations.

Click Here to Register

Click Here to Donate or Start a Fundraiser

Ostomy Awareness Day: Ostomies are Life-Savers

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“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

Ostomy Awareness Starts with You

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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.

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

Robert Harrion’s Story

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About 4 years ago, I awoke to the alarm on my cell phone, and for some reason it seemed to be extra loud this time. I had probably only slept for about 2 hours, but still, I anxiously jumped out of bed with a nervous sense of excitement. Today was the day that would forever change the path of my life. Today was the day that I was headed to the Mayo Clinic Hospital in Phoenix Arizona to have an extremely risky abdominal cancer surgery with no real guarantees that I would even survive it. I had no idea that today was the day that would begin the toughest fight of my life.

You see, at the age of 51, I was diagnosed with “Pseudomyxoma Peritonei secondary to Well-Differentiated Mucinous Adenocarcinoma of the Appendix”. Ultimately this means that years ago, a cluster of cancerous cells had formed in my appendix which caused it to eventually explode. Subsequent to this painful event, the cancerous cells spread themselves throughout my abdominal cavity attaching and growing on the exterior of several organs and producing a considerable amount of ascites fluid. My surgeon explained to me that my condition was extremely rare, and risky with maybe a 30% chance of survival. He agreed to perform the surgery, but looked me in the eyes and said only if I will agree to do my part and be willing to fight for my life!

After the twelve and a half hour long surgery, I woke up to my family hovering over me, and praying for strength and healing. As I became more aware of where I was, I began to notice the multiple tubes, cords and electronic devices attached to me. The doctors and nurses were constantly coming in to check on me, making adjustments to my I.V., monitoring my pain level, and recording my vital signs. A little later, I was paid a visit by my surgeon and he introduced me to someone referred to as my ostomy nurse. I didn’t even realize that I had this bag attached to my abdomen until she asked for my permission to inspect it. Prior to the surgery, I remember my surgeon explaining to me and my wife that an ostomy bag was a possibility, but this was the least of my concerns and I didn’t really comprehend what that actually meant. Along with a couple of other organs, my colon was completely removed and I now had to embrace life with an ileostomy.

Robert at the Arizona Run for Resilience Ostomy 5k, “the sense of family, acceptance and understanding at this event provided much needed encouragement.”

 

For the first year, I dealt with it as best as I could, but in the back of my mind I believed that soon, I would be able to have the reversal surgery and no longer have to deal with an ostomy. As I was approaching the one year anniversary of becoming an ostomate, on Facebook I came in contact with a beautiful soul by the name of Jearlean Taylor. You have probably heard of her, and know that she has been a double ostomate since early childhood. We chatted for a while, and after a detailed discussion, I was convinced that having an ostomy wasn’t so bad. A few days later, I sat down with my surgeon to discuss the possibility of the reversal surgery, and we concluded that in my case, I would actually enjoy a better quality of life by keeping my ileostomy, which now has been named Paco.

Now that the decision had been made to keep Paco, I began to research ostomies and discovered the United Ostomy Associations of America. Come to find out, they were having an ostomy conference in California the very next month, so I

Robert at UOAA’s National Conference where he discovered he was welcomed into the “ostomy family.”

booked it, and made my way to Cali. Not really knowing what to expect, I was pleasantly surprised and almost overwhelmed with gratitude as I was so warmly embraced into the ostomate family. I learned so much about ostomies, and the stories shared by other ostomates really inspired me and gave me the courage to now tell my story. Last year, I finally felt I was physically strong enough to participate by walking in the Run For Resilience Ostomy 5K in Mesa, Arizona. Again, the sense of family, acceptance and understanding at this event provided much-needed encouragement.

 

I am inspired to inspire others by publicly sharing my journey of conquering cancer and living with an ostomy. Through music, speaking and near the completion of my first book, I am telling it all so that others will realize that life experiences will ultimately make you, and not break you. I have come to the realization that my ileostomy has not only changed my way of life but has actually contributed to saving my life. I am forever grateful…

“It’s easy to say what you’re willing to die for, but there is freedom in knowing what you’re willing to live for”.

–Robert Harrion

Follow me on Facebook, Instagram, & YouTube

www.RobertHarrion.com

BookMe@RobertHarrion.com

Hollister is #AllinforOstomy!

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At Hollister Incorporated, we are proud to stand with the broader ostomy community to show how we are #AllinforOstomy.  People with ostomies, their families and friends worldwide are gearing up to celebrate World Ostomy Day on October 6, 2018—and you’re invited to join the excitement!

The Run for Resilience Ostomy 5K

Now in its fifth year, UOAA’s annual Run for Resilience Ostomy 5K has grown nationwide and our team at Hollister Incorporated will be right beside UOAA as the Diamond Sponsor of the event. A total of nine events are planned on Saturdays October 6 and 13 ranging from Durham, North Carolina, to Portland, Oregon. Much more than a walk/run, the Run for Resilience has become a family-friendly event that people look forward to all year. Many races feature a DJ, kids’ activities, a division for people with ostomies, and awards. Donations go directly to UOAA.  www.ostomy5k.org

Wear a Stoma Sticker – Share the Love

Stoma Stickers are a great way to educate, start a conversation, or show support for people living with or caring for ostomies. To show yours off, place the sticker over your clothes, on the lower right or left side between your hip and navel, where ostomies are typically located. Then, take a photo and share it on social media with the hashtags #AllinforOstomy and #WorldOstomyDay to help raise awareness and show your support!  Request your free sticker at www.stomasticker.com

Join a free educational webinar

We have developed a virtual conference that promotes skin health. Webinars will be available through the month of October starting on World Ostomy Day, and include the following.  Sign up for a webinar at hollister.com/worldostomyday

  • How to Use the Peristomal Skin Assessment Guide for Consumers
    psag-consumer.wocn.org
    A brief walk-through of how to use this important free resource from the WOCN society for teens and adults living with an ostomy. Led by Laurie McNichol, MSN, RN, CNS, GNP, CWOCN, CWON-AP, FAAN with Christine Kim, ileostomate since 1994 and founder of OstomyConnection.
  • Itching: The Invisible Peristomal Skin Concern
    A two-part series on causes and management.
  • It Begins with Skin: A Global Perspective
    A short film featuring clinicians and people living with stomas from around the world.

(Editor’s note: Hollister Incorporated is a Diamond Sponsor of this year’s Run for Resilience Ostomy 5k to celebrate World Ostomy Day. Their support helps make these UOAA ostomy awareness events possible)

 

They Run for You: Ostomy 5k Celebrates 5 Years

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Support the Run for Resilience Ostomy 5k at Events from Coast to Coast or with your own Virtual Run/Walk.

By Ed Pfueller, UOAA

Ostomate and two-time Durham Run for Resilience winner Collin Jarvis.

It was a hit from the start. Five years ago two ostomy nurses in Durham, North Carolina, Lara Leininger and Angela Richardson, had the belief that the ostomy community deserved its own awareness run and walk. “We wanted to educate the community about ostomy surgery and how persons living with an ostomy can achieve anything,” Lara says. “We want to encourage ostomates to be active and be proud of their resilience.”

Runners have done that and more at the Run for Resilience Ostomy 5k. Collin Jarvis lives with an ostomy and has won the Durham run two years in a row. Preconceived notions someone may have had about living with a “colostomy bag” are likely shattered when you’re left in the dust by a runner with an ostomy pouch.

Events always coincide with annual Ostomy Awareness Day or World Ostomy Day (which is held every three years) on the first Saturday in October. “This is our 5th year doing this race and we have brought a great deal of positive ostomy awareness to our local community and now nine communities nationwide.” The event also raises much-needed funds for UOAA to continue to support, raise awareness, advocate and provide educational programs for the ostomy community.”

Ostomy 5k co-founders Angela Richardson and Lara Leininger at the Durham, NC event.

Community members, families pushing strollers, and serious runners join in the fun every year on the scenic routes all over America. In North Carolina nurses and hospital employees also compete against themselves in a fundraising challenge, the victor taking home bragging rights and a golden toilet trophy.

“It’s awesome to see an ostomate finish first, but the run is also about all those who have come back from this lifesaving surgery and have struggled in life with an ostomy. You are all resilient just by your everyday accomplishments,” says UOAA President Susan Burns. Several people have walked at least part of the course just months after surgery, while for others it provides inspiration to set a goal, overcome fears, and run/walk this distance for the very first time.

“A majority of the public does not know what an ostomy is and if they do, most have a negative connection with ostomy surgery. There are a lot of myths that we try to bust. Those living with an ostomy live active lives, can be young, middle-aged, old, healthy, confident, etc. Ostomy surgery saves lives and a lot of times improves a person’s life!” Lara says. These 5k events are a visible declaration to communities that ostomates are here and deserve support. Stigmas melt away when people attend these events.

What was once was a North Carolina local event has known spread to nine locations nationwide. You can also attend or support 5ks in Portland, Oregon, Birmingham, Alabama, Nashville, Tennessee, Boise, Idaho, Harrison Township, Michigan, Pennsauken, New Jersey, Mesa, Arizona and East Stroudsburg, Pennsylvania.

Luckily you don’t need to be near an event to participate or support it. With the Virtual Ostomy 5k anyone can run or walk in their favorite neighborhood spot, or even on a treadmill. You can gather friends and form a team. We’ll even mail you out a free official bib number and a race tech t-shirt ($15) to join this worldwide event that takes place on World Ostomy Day, Saturday, Oct. 6, 2018. You can donate to runners or events near you, or on a national level.

The Arizona Ostomy 5k Fun Run/Walk will feature a picnic and games this year for World Ostomy Day.

This year’s World Ostomy Day theme is “Speaking Out Changes Lives” and the Run for Resilience is the official U.S. event during this worldwide celebration. All runs will take place that morning with the exception of Boise, Idaho on Saturday, October 13.

“UOAA makes an ostomy patient feel like they are part of a community and that they are not alone. They direct patients to support groups, answer questions, provide education, and allow them as a patient to give back by being a part of the UOAA. It’s best resource for anyone with an ostomy.” Says Michelle Pitylak who is organizing a first-year event on the shores of Lake St. Clair.

Also new this year is a 5k in the Pocono Mountains region of Pennsylvania and the Tennessee run is moving to the “Music City” in Nashville. Both events are timed and certified 5ks and organized by dedicated ostomy nurses. Nashville Fashion Design icon and ostomate, Manny Cuevas, is helping to make the event in Two Rivers Park one to remember.

Another first year of event will be a homecoming of sorts. United Ostomy Associations of America (UOAA) was founded in Southern New Jersey in 2005 and this year a timed 5k run/walk will be held in Cooper River Park in Pennsauken, NJ that has views of the skyline of neighboring Philadelphia.

The second oldest event is the Portland, Oregon Fun Run which returns for its fourth year. Runner and ostomate Lianne Weller is excited for this year’s run in the Milwaukie River Park. “I think the ostomy race is a great way to bring individuals, their family and friends together in a carefree activity. The 5k race also allows other ostomates to build confidence and breakdown barriers to getting back into physical shape; going one step closer to their goal. One particular aspect I look forward to when it comes to races like this, is being able to not let my ostomy be a barrier to meeting new people. I feel more confident and less self-conscious because I’m surrounded by individuals who have all gone through similar obstacles.”

The Central Alabama WOC Nurses’ Association is proud to bring the Ostomy 5k fun run to Alabama for the third time. Also returning is the successful Fun Run in Mesa, Arizona. Organizer and double ostomate Roxanne Camp is planning a great time at her picnic and 5k in Red Mountain Park. “Ostomies save lives they don’t take them,” is her personal motto.

Now in its third year the certified time 5k run in Boise, Idaho is a true community event. The driving force behind it is Megan Herrett, a mother of two children with an ostomy who wants to see her community be more accepting and educated about people living with an ostomy. If you attend prepare to be inspired by the young people running in support of their friends at this event. Attending or donating to any one of these events provides a public voice for the ostomy community nationwide, and funds raised ensure that the next person who has this life-saving surgery will get the support and information they need.

All runs are family-friendly and will feature sponsor tables and run bags. Several include a silent auction, giveaways, kids run, music, food and more. Check for information about an event near you on Facebook or www.ostomy5k.org, and Run, Walk, Volunteer, Cheer and Fundraise to support the ostomy community and UOAA!

Resilience on Display at the Ostomy 5k

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Run for Resilience Ostomy 5k Expands its Reach

By Ed Pfueller, UOAA

The cause of ostomy awareness was visible on streets and trails all over the country for two Saturdays last October. People embracing life again after ostomy surgery, people still struggling with recent hospital stays, nurses, family, friends, returning participants, and local runners, were all represented. Supporters cheered as 616 people ran, walked or rolled in this year’s Run for Resilience Ostomy 5k. On Oct. 7th (Ostomy Awareness Day) and 14th, communities in Alabama, Arizona, Oregon, North Carolina, Pennsylvania, Idaho, and Tennessee celebrated the resilience of people living with an ostomy or continent diversion by raising ostomy awareness. Another 139 runners nationwide opted to run/walk “virtually” in their own communities.

The Boise Run for Resilience Ostomy 5k is a family friendly event raising ostomy awareness. Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

Passionate local organizers, over 50 volunteers, and local and national sponsors made this year’s events possible. UOAA provided logistical support and the proceeds the non-profit organization’s national education, advocacy and support programs.

Event locations expanded again last year adding venues in Mesa/Phoenix Arizona and Cookeville, Tennessee. Located about an hour east of Nashville the Tennessee event took place on the historic streets of the Downtown, Cookeville. Runners trotted under magnolia trees and along the historic main street of town before heading to the finish. Water was handed to them by representatives from Hollister, the Platinum sponsor for the year’s events who also hosted games of corn hole outside their sponsor tent. Nashville fashion designer Manny Cuevas, known for dressing some of the biggest stars in the music industry, was inspired to run due to his own personal journey with an ostomy. He was cheered on by family and friends and accompanied on the course by a daughter. Local organizer Deborah Nelson felt particularly blessed to have Manny there because of his resilience in light of medical setbacks, and also his advocacy. “He went to the state of Tennessee to get a proclamation enacted for the state to adopt this ostomy awareness day. Not only is he an advocate for nurses and other ostomates, but he is an awesome representative,” she said while awarding him the medal in the ostomate category of the run/walk.

Manny Cuevas after the Cookeville, TN Run for Resilience Ostomy 5k

In Arizona, the first-year event had a festive atmosphere. A picnic and music inside a ramada shelter welcomed competitors returning from a stroll along the lakes in Mesa’s Red Mountain Park. Local organizer Roxanne Camp who is a double ostomate was all smiles at the event despite being discharged from the hospital just a few days earlier. Her resilience is a testament to what the Run for Resilience Ostomy 5k is really all about.

The largest event this year was again the founding 5k in Durham, North Carolina. Though the majority of the 164 runners did not have an ostomy, ostomate Collin Jarvis repeated as the overall winner. First-time participant Molly Atwater was easy to spot as she was supported by family wearing “Molly Olly Ostomy” t-shirts. “As a brand-new ostomate, the Run for Resilience was a mountaintop experience for me. To attend an event where I was surrounded by people who knew what an ostomy was – either having an ostomy themselves, supporting a loved one with an ostomy, or working as an ostomy nurse – reminded me that I belong to such a strong and supportive community. I talked with many people over the course of the run and shared my experience in my short three months as an ostomate, learning tips and tricks for dealing with daily struggles. The coolest part of the entire event was looking around and not knowing who had an ostomy and who didn’t. And with it being a 5K, that drove home the idea that there is nothing an ostomate can’t do. I walked the race this year, but I am determined to run the whole thing next year. It’s an event that I would never miss in the future.”

The event drew runners from hundreds of miles away and again took place on the scenic American Tobacco trail and featured a popular silent auction and sponsor tents. The always popular stroller division again made this truly a family affair.

A family atmosphere was also central to the 2nd annual Ostomy 5k in Boise, Idaho. Despite frigid temperatures, 151 runners suited up for the event. Children could be seen tossing golden leaves into the air as runners passed by. They got their own chance to run in a 1-mile kids fun run.
Runners in Portland, Oregon also braved the cold to run along the Milwaukie Riverfront Park in what was the third year for the event. The event also returned to Birmingham, Alabama where the weather was much more pleasant. The Birmingham Area WOC Nurses’ Association again generously agreed to host the event. This year it was moved George Ward Park in Birmingham.

You did not have to go to any of these locations to take part in a run however. Our virtual run simply means you can walk/run in any location of your choice. You can gather with a support group, friends or family. Participants walked/ran in locations from the mountains of Colorado to the shores of Nova Scotia, or even on their own treadmill. Each participant got their own race bib number and t-shirt to recognize the awareness day.

Some virtual gatherings took on a life of their own. In Stroudsburg, Pennsylvania the mayor came out to cut a ribbon and walk at an event that attracted over 50 people. Enthusiasm for the walk was generated by organizer and ostomy nurse Gina Day had recently started the first UOAA support group in the area. “The outreach I received was priceless. I met some amazing people along the way, and appreciate all the donations I received to help bring awareness to the forefront! I realized how many lives I touched, when they all showed up and walked right next to me. I can not thank UOAA enough for their guidance and support to make this event possible for our ostomates in the Pocono region!  I look forward to next year where I can provide an official 5k walk/run for ostomy awareness in our community.”

“The local organizers really are the heart and soul of what makes this event so special, and I can’t thank them enough,” says UOAA Executive Director Christine Ryan. “Our dedicated sponsors enable us to bring the ostomy awareness event to communities across the country.”

UOAA hopes to see the Ostomy 5k grow even bigger and reach more people in 2018 when the event will coincide with World Ostomy Day on Saturday, October 6th. Tentative run/walks will be held in Nashville, Southern New Jersey and Harrison Twp. Michigan . Visit www.ostomy5k.org  or follow us on Facebook for the latest 2018 event information. To be a national or local sponsor, start a fundraiser, or inquire about organizing an event in your community, contact Christine Ryan at christine.ryan@ostomy.org or 207-985-9700. A heartfelt thank you to the following 2017 National Sponsors. Platinum- Hollister, Silver- Coloplast and Bronze- Convatec, Safe n Simple, and Hy-Tape.

Herrett Family Story

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By Megan Herrett

Adequately summarizing what our family has gone through over the past almost ten years requires going back to the very beginning.  Our daughter, Maggie was three months old when we realized that she looked a little jaundiced.  Our pediatrician agreed and ran what would be the first of hundreds of tests to determine what was wrong with our baby and why her liver function tests were so elevated.  After being seen by multiple specialists here in Boise for a few months, we were referred to a doctor at Primary Children’s Medical Center in Salt Lake City in November of 2008.

Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

When Maggie was about six or seven months old, we noticed that she was starting to scratch quite a bit.  Her arms, feet, and ears were covered in scabs and scratch marks.  This itching was a side-effect of her liver not processing bile correctly – when not processed by the liver, the bile backs up into the bloodstream and circulates back through the body, resulting in an increase number of bile salts in the body.  It is these bile salts in the bloodstream that make an individual with a liver disease very itchy.

At first, we were able to control her itching through several medications but by the time she was 12 months-old, her itching had become unbearable.  At that time, her liver was deteriorating quickly and she was exhibiting some developmental delays as a result of the incessant itching.  In a matter of weeks, she had pulled out all of her hair and she was maxed out on her medication dosages.

We were presented with the option of an ostomy-placing surgery when Maggie was just over one-year-old as an alternative to a liver transplant.  The purpose of her ostomy would be to (1) drain bile from her body to combat the itching, and (2) slow the progression of her disease by giving her liver a much-needed reprieve.

To be honest, I was devastated when I first heard the words, “ostomy bag.”  I imagined a life where Maggie would never wear a bikini or be a cheerleader or be captain of her swim team – all very big concepts when you are talking about a one-year old child.  I imagined her being bullied because she was different.  But, we needed a solution…and we needed to act quickly.

Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

Maggie underwent ostomy surgery on October 30, 2009, and we haven’t looked back.  She is now eight-years-old and is thriving health-wise as well as academically.  Additionally, she is also excelling on a competitive gymnastics team.  And although Maggie absolutely beams on the outside, she struggles with confidence because of her ostomy pouch.  She is fiercely private and does not want any of her peers to know.  My husband and I have worked tirelessly to emphasize to her that her pouch is nothing to be ashamed of – after all, it saved her life and she would not be the person she is today without it.

In 2010, we were blessed by the birth of our son, Winston.  We soon discovered that he was plagued with the same disease and would then undergo the same surgery when he was just over one-year-old.  Although this news was devastating at the time, we have come to realize that it was a blessing in disguise.  Both of them have the same liver disease and both wear ostomy pouches – commonalities that they can rely on when the going gets tough.

I can still recall my “aha moment” though – that moment when I realized that we would not be a family that sat idly by and let her pouch be a source of shame or embarrassment for her.  Maggie was probably two years old at the time and we were in the throes of potty-training, where our previous line of attack of onesies and bib overalls to prevent her from yanking her pouch off, were no longer an option.  She was finally in a shirt and a pair of pants…and her ostomy bag was peeking out from the hemline of her shirt as we left a restaurant.  A man entering the restaurant noticed her ostomy pouch and said, “Ewwwww!  What IS that?”  Although my initial reaction was one of anger and dismay, it was then that I realized that working with her would be only one piece of the puzzle – we also needed to work with the community to help educate, support and raise awareness for those like Maggie so that the shame, fear and embarrassment would fade away to empowerment and pride.

It was this “aha moment” that led me to contact the United Ostomy Associations of America in January of 2016 about bringing their Run for Resilience Ostomy 5k to Boise.  My inquiry was met with a resounding “YES!”  We held our inaugural race on Saturday, October 8th and had over 160 people registered for the 5K and Kids’ Mile events.  We even had participants, including ostomates and ostomy nurses, drive in for the race from Spokane, Washington and Lewiston! And Hollister even donated ostomy pouches to include in our race registration bags.  If nothing else, I am hopeful that this year we laid the foundation for many successful years to come and got some ostomy-related dialogue started.  Instead of “ewww,” maybe people will say, “Oh, I know what that is and that saved their life!”

The Boise Ostomy 5k is now in its 4th year! For more information on our Run for Resilience events around the country visit www.ostomy5k.org

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