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

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!

Swim Confidently with an Ostomy

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After healing from ostomy surgery, people of all ages and types enjoy swimming, surfing scuba diving or just relaxing in a hot tub. We understand the anxiety from worrying about leaks can keep some people out of the pool. There are no ostomy specific restrictions to swimming in public places. “Swimming has made me stronger both physically and emotionally. It is a great outlet and has made me even healthier. I feel and look more beautiful” says Lynn Wolfson of Florida. Lynn has two ostomies and swims in triathlons. Here are some solutions to common concerns.

I’m afraid that my pouch will leak or my wafer will loosen while I’m in the water.

Remember, your pouching system is resistant to water and with a proper fit, it is designed not to leak. If you have output concerns, eat a few hours before swimming. A good habit is to empty your pouch before taking a dip. If you are hesitant about how your wafer will hold, take a practice soak in your bathtub. It is best to avoid applying a new skin barrier/wafer or pouch right before swimming. The WOCN Society recommends allowing 12 hours for proper adhesion. Using waterproof tape or water-specific barrier strips are not necessary for most, but can provide peace of mind. There are a wide variety of ostomy supplies on the market for swimming and you should be able to find a solution that works best for you. If your pouch has a vent, use the provided sticker over the air hole so that the filter remains effective.

What can I wear or do to help conceal my pouch and keep it secure?

Wearing a patterned or darker color is less transparent than a light-colored swim garment. Options for women include patterned and boyleg one-piece suits. For a two-piece suit, consider a mix and match of tankini tops, high-waisted bottoms or boy shorts. You can also look for a suit with a concealing ruffle or skirt. Men often favor a higher cut waist for trunks, or suits with longer legs. Stretch fabric undergarments and swim or surf shirts also provide support. Ostomy bands and wraps are also commonly used. On the beach or poolside don’t be surprised to know that some ostomates are comfortable with simply wearing the swimsuit of their choice- with swim fabric pouch covers or just an opaque pouch. There is also swimwear and accessories specifically made for ostomates by a variety of manufacturers.

What do I do if I am approached by pool personnel concerned that my ostomy is an open wound or believe ostomy pouches are not allowed in pools?

The best approach here is to stay calm and try to educate. However, unless you or another person tell pool personnel, no one should know you have an ostomy. Contact UOAA Advocacy Manager, Jeanine Gleba if this is a recurring issue at your swim location. The Americans with Disabilities Act ensures your right to pool access and most disagreements can be solved through education before exploring any legal recourse. Some scuba diving operations also incorrectly list having an ostomy as an exclusion on pre-dive paperwork. Contacting PADI (800) 729-7234 can help educate them that there is no reason to avoid diving if you have an ostomy pouch.

Meet with a WOC nurse for questions about what supplies may work best for you and stop by your local UOAA Affiliated Support Group or visit our discussion board at ostomy.org to ask what your peers do to feel confident and secure while swimming.

Get yourself a bathing suit and start swimming!