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Ostomy Awareness Starts with You

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. 

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

Click Here to Register at an Event Near You

Click Here to Donate or Start a Fundraiser

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

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Yoga for Every Body

By Elaine O’Rourke

As I yoga teacher I was fortunate that I had developed mind-body practices to really help with the emotional roller-coaster ride of getting my ostomy. I was 35 years old when I got my ileostomy due to Crohn’s disease. I opted to make it permanent after a year and then I made a full recovery and have felt amazing for the last 13 years.

While I was deathly ill and recovering from surgeries, the focused breathing practices helped me the most. I had complications from the surgeries so it took some time to really get back into the physical practice of the yoga poses. I had to be very mindful of any poses that stretched my scar sites. But gradually my body healed and I am able to do everything.

Luckily yoga has so much more to offer and there is something for every body. There are deep healing practices such as restorative, yin, breathing, mindfulness, meditation, mantra. The philosophy provides insights into being more aware of our thoughts and then in turn how they may be affecting our emotions and physical states.

Personally, I have gained so much insight and a much broader perspective on how to look at life. No one wants to get ill or have an ostomy but it has taught me first-hand how to be resilient, how much inner strength I have and to value my life and live it to the fullest.

I truly believe in the importance of moving the body (provided you are well enough) getting outside, breathing the fresh air, absorbing the sunlight or sitting under a shady tree is so good for us this time of year. Personally, I try and get up early in the summer months and go down the beach to walk, swim, do yoga and surf (being out early is best for my Irish skin). I also teach yoga on the beach which is a great experience.

It can be intimating to go to a yoga class and to find the right one. There is a wide variety of classes and styles. How you resonate with the teacher has a lot to do with the experience too. If you are brand new to yoga then I suggest starting with gentle, restorative or beginner yoga. If you don’t like a class or teacher then try other ones. It’s like shopping, not everything fits right and it’s the same with yoga. Do tell the instructor that you have an ostomy and you can educate them on what it is! Always empty your bag beforehand and don’t hesitate to go to the bathroom throughout the class if you feel it fill up. You want to create a comfortable environment for yourself. It doesn’t matter what other people think. If you have a hernia then make sure to wear your hernia belt and move cautiously.

I’ll be teaching Rise and Shine Yoga for Every Body at UOAA’s National Conference in Philadelphia this August. It will be a fun way to wake up and be part of this experience. Whether you are brand new to yoga or a seasoned practitioner I hope you will join me. I am a lighthearted teacher and I definitely don’t take the practice or teaching too seriously. In fact, if you can have a bit of a laugh while doing yoga then that is a bonus in my opinion!

I hope you enjoy the short yoga video of some standing poses.

ElaineOrourke.com

 

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Fun In The Sun, Ostomy Style

Feeling comfortable and fashionable by the water this swim season

By Ellyn Mantell

Living on the East Coast means sand and sun as soon as the calendar pages turn to May, and most have great difficulty saying farewell to the ocean each fall. The smells of delicious boardwalk foods, carnival-style rides, miniature golf and people-watching on the beach fill the days and nights of the summer months. It seems, for all of us, there are not enough opportunities to enjoy our vacations or weekends, and ostomates certainly do not want our particular issues to slow us down!

The first summer after my ileostomy presented a bathing suit challenge, and my creative energy began to flow. Since I love whimsy, I bought a black and white polka dot swimsuit bottom from an ostomy clothing company, which has a place for my pouch, and a soft drape to the fabric. I paired it with a vibrant red tankini, which I bought at a bathing suit store in the local mall. For those unfamiliar with tankinis, I am happy to extol praises on their wearability for all women – they are simply tops for a two-piece suit, but unlike a bikini top, which exposes the abdomen, tankinis cover the entire abdomen and are exceptionally flattering. Incidentally, this 2-piece approach works very well for those of us with a smaller upper body, or vice versa. I loved wearing my attractive ensemble, my pouch was hidden, and my self-esteem was certainly not deflated!

In addition to the 2-piece approach, many women enjoy wearing a sundress, since, like the ease of a “little black dress,” the fit is extremely flattering and there is no concern about pulling together disparate pieces. Most women have a preference about the type of bathing suits they want to wear, and our ostomies do not preclude us from our choices, particularly for those who wish to actively swim or dive. There are even high-neck active swim lap suits for serious swimmers.

Coverups have always been a staple for women, and they are ever more important to some ostomates. A flowy chiffon or traditional linen coverup provides a vertical line for the eye, and since color is always attractive, prints, brights, black and white all call attention upward, making the legs look longer and thinner.

Men can now find specialty ostomy swimwear online and know their pouches are safely protected while swimming or diving, as well. Some prefer to wear under their suits products such as a swimwear coverup or ostomy support wrap, made with lightweight water-resistant material to provide structured support, while compressing the pouch against the body. If there is real concern about the efficacy of their pouching system, some men and women prefer to use a waterproof ostomy cover. And speaking of coverups, men may consider swim shirts, sweatshirts or t-shirts to cover themselves.

No article on bathing or swimsuits would be complete without a conversation about sun protection clothing. This category of swimwear is growing exponentially each year, since the sun is stronger than ever, and our knowledge of the need to be proactive in protecting ourselves is better understood. If you look online you will find UV, sun-retardant and even chlorine resistant swimwear.

Now throw a good book or The Phoenix Magazine in your tote bag, add a huge hat or baseball cap, fabulous sunglasses, throw in SPF 50 Sunscreen, some ostomate-friendly nibbles and lots of cool water. Enjoy the day, summer never lasts long enough!

 

Ellyn Mantell blogs at morethanmyostomy.com and is a UOAA advocate and support group leader from New Jersey. 

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Get Back in the Game

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Exercise your fitness options with these helpful tips

by Wil Walker, MBA, BSN, RN, WOC Nurse Manager, Clinical Education, Hollister Incorporated

When is it safe to start exercising after ostomy surgery?
Stoma surgery is a major event that should not be underestimated. The first few weeks or even months following the operation may be difficult as you adjust gradually to having a stoma. The easiest and most effective form of exercise can be walking. It’s best to check with your healthcare provider to determine the right time for you to begin exercising, as every person can be different.

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I’m nervous about doing sit-ups and crunches because I have heard that I could develop a hernia. Are there precautions I can take to avoid this?
There may be a risk you will develop a hernia around your stoma that can be associated with straining or heavy lifting during strenuous abdominal activity. You can help prevent the development of a peristomal hernia by taking certain precautions. Keep your weight in check and talk with your surgeon before resuming any abdominal exercises.

How will I know that I am sufficiently hydrated?
One good sign of being well hydrated is passing clear or straw-colored urine throughout the day. Dehydration can be a concern for overachievers, whether they have stomas or not. Drink plenty of fluids at every opportunity to avoid problems with your stoma and with dehydration.

I am still very tired after my surgery. What kind of exercise can I do to start out?
Begin by walking in your house. Special videos and DVDs, or even just some invigorating music will help set the pace. You might practice going up and down stairs to increase stamina and endurance. But, if weather permits, walk outside in the fresh air to help boost your physical and mental spirits!

I love swimming but I’m nervous that my pouch will become loose in the water. Is there anything I can do to make sure this doesn’t happen?
This is a valid concern for a person with an ostomy. To determine how your pouch might perform while swimming, it is recommended to “test” your pouch. Sit in bath water for a while and assure yourself that the seal stays snug and leak-free.sports and fitness with an ostomy, sports, fitness, exercise, active living, colostomy, ileostomy, urostomy

I ran my first marathon after ostomy surgery and little red marks appeared on my stoma. What are these and should I be concerned?
With a lot of running, little red marks similar to mouth ulcers might appear on the stoma because of rubbing or chafing. They should heal quickly and disappear with rest. If they don’t resolve, contact your healthcare professional.

When I exercise I perspire a lot. Is there anything I can use to avoid chafing around my pouch?
If your pouch fits properly and is not too long, it should not touch or rub against the skin. Empty your pouch before any strenuous activity as well to decrease the weight of your pouch. Consider using a pouch that has a comfort panel to avoid the pouch film from rubbing against your skin.

Have a question that wasn’t answered here? Check out this helpful new brochure from Hollister Incorporated. Living with an Ostomy: Sports & Fitness.

Hollister Secure Start services provide ongoing support to people living with an ostomy. We are here to help! Call us today at 1.888.808.7456.

Editor’s note: This educational article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

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10 Awesome Reasons to Support, Walk or Run the Ostomy 5k

Bring Ostomy Awareness to your Neighborhood with the Run for Resilience Ostomy 5k

October 6 and 13, 2018

 

  1. Change a Life. The theme of World Ostomy Day on October 6, 2018 is “Speaking Out Changes Lives”. Speak out to smash stigmas and never let someone choose death over an ostomy ever again.
  2. Support the Dream of a Someone with an Ostomy. Some run for the first time, others walk to discover a new life after surgery. Donate to support a Run for Resilience location in your state, the worldwide Virtual 5k, or a participant fundraiser. If you or your support group start a fundraiser you can win prizes such as an exclusive Run for Resilience t-shirt, visor or group party. (Proceeds benefit the programs of UOAA)
  3. Have Fun and Get in Shape. All events are family-friendly and some feature special happening like a picnic (Arizona), giveaways, kids runs and activities, silent auction, free beer (Idaho),

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

    food or other perks. Check a location near you for local details. Feel better and crush your weekly step goal by starting to train today.

  4. You Can Do it Anywhere with a Virtual 5k. Challenge yourself and show the world what people living with an ostomy are capable of. Be a visible presence and walk/run anywhere you’d like in your community. Represent the resilience of all ostomates. Take photos of you and your friends doing the 5k and inspire others on social media.
  5. Win an exclusive designer ostomy pouch cover. Legendary Nashville fashion designer Manny Cuevas (a proud ostomate and race organizer) is hand making a pouch cover and it can be yours by registering as an ostomate and placing in the top 3 at each location or by gathering one of the biggest groups of family or friends to walk or run with you for the Virtual 5k.
  6. Get a free Ostomy Awareness Sticker. Register for the Virtual Ostomy 5k or pick one up at any of our 9 locations. You’ll also get a free race bib!
  7. Get a World Ostomy Day T-Shirt and Represent the USA. Register by Sept. 17th to be guaranteed your preferred race t-shirt size. Run athletic shirts are included with all event locations ($15 for the Virtual 5k). It’s the official event of #OstomyDayUSA, tag on social media to share your photos.colostomy bag, run for resilience, ostomy pouch, stoma bag, ostomy 5k, run for resilience
  8. Discover a New Ostomy Supply or Resource. Stop by sponsor and ostomy supply company display tables, or chat with a UOAArepresentative at events across the country.
  9. Get Outside and Run in Scenic Locales. The first week in October is a beautiful time of year and runs take place among some breathtaking beauty. A historic trail in Durham, lakeside in Michigan and Arizona, riverside parks in New Jersey, Nashville, Portland, Pennsylvania and Boise, along tree-lined streets in Birmingham, or your favorite spot with the Virtual 5k.
  10. You can Go at Your Own Pace or Cheer from the Sidelines. People of all ages and athletic backgrounds take part in the Ostomy 5k. An ostomate typically wins one of the runs while in others they are among the final finishers. It’s all about what resilience means to you.

Register or donate today at www.ostomy5k.org!

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They Run for You: Ostomy 5k Celebrates 5 Years

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!

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