Tag Archive for: ostomy awareness

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 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

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.

How Stephanie Urzi is Raising Awareness

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Stephanie shown here with the proclamations she had declared for Ostomy Awareness Day in 2016. (Left side proclamation is from Governor Chris Christie for the State of New Jersey; Right proclamation is from the NJ Ocean County Board of Chosen Freeholders)

Stephanie shown here with the proclamations she had declared for Ostomy Awareness Day in 2016. (Left side proclamation is from Governor Chris Christie for the State of New Jersey; Right proclamation is from the NJ Ocean County Board of Chosen Freeholders)[/caption]

In 2003, at the age of 29, I was diagnosed with Crohn’s Disease. I remember telling my family that if I ever had to “poop in a bag” to just kill me. But in 2009, at the age of 35, what 29 year old me would have thought to be a worst nightmare ended up being the thing that saved my life.

In November of 2009, a complication of Crohn’s Disease, Toxic MegaColon, almost took my life. Without surgery, there was a 100% chance I would die. With surgery there was still only a 20% chance I’d survive, but at least there was a chance, so a subtotal colectomy with ileostomy was performed, and 4 days later, I was brought out of a coma.

So grateful to be alive, it was then that I realized that “pooping in a bag” was not what I once thought it was. In fact, having an ostomy was life saving! But the thoughts I had regarding ostomies are not mine alone. For too long, there has been a stigma and much misinformation surrounding ostomies and ostomy surgery.

Because of this, some have chosen suffering and death instead of an ostomy and life. Therefore, raising ostomy awareness is important to me because LIFE is important to me. I want people to know that having an ostomy is just another way to live life to the fullest.

My favorite saying regarding an Ostomy/Stoma is this: You can make it your friend or you can make it your enemy. If you make it your enemy you will have a hard time surviving. But if you make it your friend, not only can you survive, you can thrive.

Love your Ostomy and embrace life!

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