Ostomy Support, Love and Giving Back

By Jeanine Gleba, UOAA Advocacy Manager

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

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

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

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

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

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

UOAA:             Such a great story!

UOAA:          How did you get involved in UOAA?

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

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

UOAA:           Why do you advocate for ostomates?

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

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

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

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

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

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

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

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

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

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

UOAA:            What does Veterans Day mean to you?

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

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

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

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

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

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

                                                      Understand (your diagnosis)

                                                      Overcome (adversity)

                                                      Attitude = 100%

                                                      Adapt (to your lifestyle as an ostomate)

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!

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)

 

By Jeanine Gleba, UOAA Advocacy Manager

“Awareness is the greatest agent for change.” ~ Eckhart Tolle

It’s coming!  As I write this there are 50 days 9 hours and 41 minutes until World Ostomy Day on October 6, 2018!  (Current Countdown) Then you will have to wait another 3 years for the International Ostomy Association to sponsor it again.  UOAA is thrilled to join our national efforts with the rest of the world and we want ostomates across the country to join us from big cities to small town America to make this day a pretty big deal.

In both my professional and personal life as an “advocate” I know first-hand that the key to success for any advocacy cause is awareness. Simply put the more people talking about something the more attention it will attract (e.g., a video gone viral or hot issue on the political radar in the media). Unless you are personally affected not only do most people not even know what an ostomy is but they certainly don’t know how much this surgery can change lives for the better. A prime example of this is a person suffering for years with an irritable bowel disease such as ulcerative colitis who finally finds relief by having ostomy surgery. This is why it is crucial that we heighten consciousness around the globe to increase understanding of “ostomy”, remove feelings of embarrassment and eliminate fears so that ultimately when all other medical treatment options have failed more people will choose this surgery. Then more lives will be improved and saved.

I’m particularly excited this year’s theme is “Speaking Out Changes Lives”. What better way to raise awareness than to “speak out”?   What better way to improve lives and make concerns known such as when a person has received poor quality of care, than to “speak out?” What better way to advocate for a dedicated national day of ostomy awareness than to “speak out”?   

Do you know how to raise awareness? Think of the causes that you support. Look around you.  Everywhere you turn there are reminders of one cause or another keeping issues alive and on people’s minds (e.g., Breast cancer started out as a simple pink ribbon symbol in 1982 and has now turned into a global sensation with all of the pink anything and everything that is available for purchase to raise research funds. Not to mention all that is done during the month of October and all year long for breast cancer awareness).  There are many ways to raise awareness such as having a car bumper sticker or the widely popular Twibbons, but the best and simplest way is just….you got it…. “speaking out”. The growth of ostomy awareness is realized each time a person living with an ostomy shares his/her story. Each and every one of us has a powerful voice and together we can make a big impact.  Learn more ways to raise awareness in UOAA’s toolkit “Be an Ostomy Champion”.

Get Involved

Here’s some of the ways UOAA is raising awareness for World Ostomy Day: 

  • Expanding our annual family-friendly Run for Resilience Ostomy 5k events across the country now in nine states (AL, AZ, ID, MI, NC, NJ, OR, PA or TN) as well as well as a worldwide Virtual Run/Walk. Hundreds of people will attend these events and even more will witness the event as people run the course.
  • Promoting ostomy awareness year-round with a free “Ask Me: What is an Ostomy?” sticker for all those that register for the Virtual Run/Walk.  This sticker can be put on cars, laptop covers, water bottles or any where you want to raise awareness. Help UOAA teach the world what an ostomy is!  
  • Encouraging more people to use our sample proclamation to get one passed in towns, counties and states across the country officially declaring Ostomy Awareness Day. In addition, NJ Congressman Donald Payne, Jr. has agreed to be the Primary Sponsor of a Congressional Resolution nationally recognizing Ostomy Awareness Day for the first-time ever!
  • Sharing our special logo for World Ostomy Day and the use of dedicated hashtags for social media recognition: #WorldOstomyDay2018 and #OstomyDayUSA.
  • Coordinating our very own 1st Annual Virtual Day on the Hill competition to raise ostomy awareness with lawmakers!
  • Producing a very motivating “Speak Out” Campaign call to action video!

Please keep visiting our dedicated and frequently updated webpage to find more ways you can get involved in the celebration this year!  And make a mental note to yourself that it doesn’t end on October 6th. Awareness can happen every day. We’re counting on to you to make it happen.

Inclusive Campaign by Lingerie Retailer Puts Ostomy in the Spotlight

By Ed Pfueller, UOAA

This feels like a moment. For many in the ostomy community seeing that someone with an ostomy has been included as a model, ostomy pouch showing, in a large national retail website was groundbreaking.

The viral #AerieREAL campaign showcased a smiling ostomate alongside other body positive models living with an insulin pump, wheelchair, crutches and conditions such as fibromyalgia and cancer. The brand has long highlighted “real, authentic and unretouched women.” You can find the photos scattered over their product pages.

The model, Gaylyn Henderson, has been sharing her infectious positivity with the ostomy community for years including in a past Ostomy Awareness Day Video produced by UOAA.

Her website Gutless and Glamorous chronicles her life speaking out in support of ostomy and IBD awareness. She was selected for the campaign after submitting a video for an open call for models. Gaylyn has since become a face of the campaign in mainstream media outlets such as People, CNN and Today.

She told Today Style “Having the support of an influential brand like American Eagle to promote positive ostomy awareness has already changed lives, and I know this because of the feedback I am seeing and receiving,” “To have this opportunity is surreal! For Aerie to give me this opportunity, I’m beyond grateful and thankful they would give someone like me a shot.”

The reaction has been uplifting and positive when shared on our Facebook Page and all around the web and social media.

Shaina W This is amazing! I had an ileostomy for 2 years because of ulcerative colitis and seeing this girl model hers with no fear is so incredible. I hope this sort of thing makes it less scary for people to go through this kind of surgery when they need it. I was so scared of how having an ileostomy would change my life that I wouldn’t even consider it for a couple years even though was so sick. This girl is showing how brave and awesome she is and I hope it inspires lots of people. 😃

Avigail V Fabulous! As an ostomate, I’m thrilled to see us represented!

Megan H If you read through the comments everyone has been posting in response, it has been a dialogue game changer! People were asking all sorts of questions (which is exactly what those of us promoting ostomy awareness want and need) and expressing tons of positivity! As the mom of two young kids (a 10-year-old daughter and 7-year-old son) with ostomies, I am over the moon with this campaign, even if it’s only in viral form, which for some people, is the only way they get their information.

Many people with an ostomy reading this post have probably already had a friend or family outside the ostomy community email you a news link to these photos. And that proves that it is working, and reaching the audience it needs to.

Want to keep up that momentum? Spread ostomy awareness far and wide and invite everyone you know to celebrate World Ostomy Day this year.

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!