Photo Cred:  Dave Camara / Camara Photography

 

By Ed Pfueller, UOAA Communications & Outreach Manager

If you’re looking for Patrick McKinney you’ll likely find him outdoors. Depending on the season, McKinney, 54, of New Market, Maryland, can be found speeding down a ski slope, powering up a hill on his bike, tending to horses, or photographing his daughters playing sports.

That wasn’t always the case.  In 1984, as a 17-year-old, while donating at a high school blood drive, he was found to be anemic. The formerly active teen had been experiencing incontinence with blood loss for 18-24 months and was afraid to tell anyone.  After confiding in his mother and seeking a diagnosis, a colonoscopy revealed ulcerative colitis. By his mid-twenties he found himself hospitalized several times after his body stopped responding to conventional steroid-based therapies.  In 1993 he had the first of five surgeries that over the years eventually led to a temporary ostomy and a j-pouch. He was plagued by stricture problems and other issues with the j-pouch. “With the j-pouch I was still going to the bathroom 15-20 times a day when it was bad,” McKinney remembers. When another surgery was required in 2004 because his j-pouch perforated leaving him septic, his doctor at the Cleveland Clinic prepared him for the fact that depending on how it went, McKinney could wake up with a permanent ileostomy.

“It’s like being a kid again, wind blowing in your hair takes you back to your teenage years”

Indeed that was what happened and he experienced the struggles so many new ostomates have while trying to adjust both mentally and physically. McKinney now says, “Getting an ostomy was the best thing that ever happened to me, I got my life back.”

McKinney credits reading Rolf Bernirschke’s book Alive & Kicking for encouraging him to not be held back by his ostomy. “His book got my life back on a normal track. I started being an advocate and lived life again.” McKinney recalls.

McKinney wrote to Rolf and was honored to receive a Great Comebacks Eastern Region Award in 2008, which included the chance to meet the inspiring former NFL Man of the Year.  Since then he has embraced taking part in sports he had never even tried before having ostomy surgery.

McKinney’s first major post-surgery athletic challenge was competing in a half-marathon in Sonoma, California in 2009. The success of it inspired him to try other competitive sports. A family ski trip to Colorado piqued his interest in alpine ski racing. After entering an amateur event in 2014, he was surprised to learn his time qualified for nationals in his age group. After that he was hooked on “running gates.” McKinney has been alpine racing ever since and is a member of NASTAR’s Team Zardoz and the United Ski And Snowboard Association (USSA) Mid-Atlantic Masters Ski Racing Association and trains at Montage Mountain in Scranton, PA.

During the rest of the year, McKinney can most often be found on his bicycle touring the rolling hills of rural Maryland. As a member of the Frederick (Maryland) Pedalers Bicycle Club he rides over 3000 miles per year including events like the Tour de Frederick and the Civil War Century.

“It’s like being a kid again, wind blowing in your hair takes you back to your teenage years,” he says. For those hesitant to try riding again McKinney advises “Being prepared helps to put your mind at ease.” “Have a plan and know where the bathrooms are at local parks, I empty right before to go out. The back pocket on a cycling jersey is perfect for bringing extra supplies and wipes. My ileostomy tends to not have much output when I’m being active.”

In 2019 McKinney heard that UOAA’s National Conference was coming to Philadelphia, PA and welcomed the opportunity to see Rolf again and check out the unique event. Talking to other ostomates at the conference inspired him to do more with UOAA. “It helped me realize this is a chance to see what I can do, and that it is the right time to get more involved with the Frederick Area Ostomy Support Group.” McKinney has been an active member and is now the group’s President, supporting their activities even as in-person meetings were suspended this past year. In just the past few years he has offered his perspective as an ostomate to nursing students at a local community college and as an ostomy patient visitor. In support of Ostomy Awareness Day, he helped to procure proclamations from local government and organized a walk for the Run for Resilience Ostomy 5k, a major fundraiser for the programs and services of UOAA.

“Getting an ostomy was the best thing that ever happened to me, I got my life back.”

“The biggest thing is to provide some hope.  Almost everyone is devastated and so unsure about how to live through this experience,” McKinney says. On a national level, McKinney is now a member of the United Ostomy Associations of America Education Committee.

“I try to lead through living my best life. Sharing what I can do, but also keeping in mind to listen to your body. Get out there and walk, or ride on a bike.  For most, an ostomy will not impact that, I try to be encouraging and positive.”

His advice for other ostomates looking to get active? “Your only limitation is your mind.  If your doc says you are healthy enough do it, hydrate, hydrate, and always be prepared.”

Embracing Ostomy Advocacy and Giving Back

 

By Angie Davenport

I’ve had my ileostomy for 38 years due to ulcerative colitis but I only recently went public to encourage other ostomates.  Over the years I’ve helped many individuals by word of mouth while keeping my ileostomy private to the outside world. I have always wanted to be a blessing on a wider scope though to others with ostomies.

I was first diagnosed with ulcerative colitis in 1980 when I was three months pregnant.  At first, I thought it was pregnancy symptoms.  After a major episode, I was treated with medication for ulcerative colitis.  My son, James was born a few weeks early due to complications.

After the birth of my son in March of 1981, everything was under control and I eventually relocated from Warren, Ohio to Atlanta, Georgia.  While living in Atlanta I had a major setback with ulcerative colitis and I had to fly back to Ohio immediately and went directly to the hospital.

After several weeks of treatments in the hospital, my doctor came into my hospital room one night and said we have to do surgery or you won’t make it 24 hours.  I’ll never forget my mom crying and praying for God to give her my disease so I could have a normal life.

When I received my permanent ileostomy in March of 1982 I was a young 23-year-old single mom.  It was the day before my son’s first birthday.  I had never heard of an ostomy.  When I woke up in ICU I was devastated, ashamed and frightened.  I thought my life was over.

Once I became strong enough physically and mentally I moved back to Atlanta.  I was still feeling ashamed and frustrated until my physician in Georgia recommended I attend the local United Ostomy Association (the precursor to UOAA) support group.

While living in Atlanta I became very involved with the UOA group and completed the visitor training program.  I enjoyed visiting new ostomates at the hospital. I felt the freedom to be involved because no one really knew me in Atlanta. I remained active until I relocated back to Ohio in 1985.  That same year I married my high school sweetheart and we will celebrate 36 years of marriage in November.

Although I was very private about my ostomy I was very successful in my career. I became the first African American female officer at our local bank and functioned in several positions without the exposure of my ileostomy.  After the downsizing of my employer, I later worked 10 years at Great Lake Cheese until retiring in 2016.

What is my purpose in life?  How can I make my mom proud?

I’ve enjoyed my life as an ostomate.  I love traveling, cruising and shopping.  I was known in the business community as a person that loved to dress. I taught Dress for Success at the bank for all new tellers.

The past few years were filled with so much grief, with the most current being the death of my mom on July 4th 2019, only three days after my 60th birthday.  I was feeling the deep void of losing a brother and both parents within 4 years, depression was setting in.  I had support but I felt helpless and lost.  What is my purpose in life?  How can I make my mom proud?

Most will remember 2020 as a horrific year with so much sickness, death and devastation from a deadly pandemic.  For me, I utilized the time to seriously seek God for a purpose in my life and being quarantined turned out to be a blessing in helping me find my purpose.

I knew my testimony would bring awareness and hope to so many people.

I became more involved via social media with other ostomates.  I’ve met some wonderful friends and it became rewarding to encourage others that had shared similar experiences as me.  My heart was really saddened when I read an article about a young man that had gone to court for the right to die because he didn’t want to live with an ostomy.  I wept.  Also seeing how some individuals can’t afford the basic ostomy supplies and had to use grocery store bags and tape to secure their ostomy bags was heartbreaking.  I knew then, that there was so much more I could do for the ostomy community.  I knew my testimony would bring awareness and hope to so many people.

As a member of Jearlean Taylor’s Ostomy Stylzz Facebook Group I participated in a virtual fashion show.  She is a personal inspiration to me and that show boosted my confidence to a much greater level.  I felt a relief to go public.  I chose August 14th, 2020 to go live on Facebook and share my story.  I felt such freedom once I finished.  There were family members, coworkers, church and community friends that responded and supported me in disbelief.  For the past 38 years, they never knew I had an ostomy.

One family friend messaged me and told me that he was scheduled for surgery but has canceled many times, but because of my video he felt he could now go through it.  I still check on him to make sure he’s not having any problems.  That made going public all worth it.  But what else could I do?

I decided to participate in the Run for Resilience Ostomy 5K.  I registered over 20 walkers to participate virtually in several cities and I exceeded my fundraising goal by almost 100%.  The highlight of the day was my local mayor stopping by to present me with a proclamation from the City of Warren in support of ostomy awareness. Our local newspaper also highlighted the event.

…because of my video he felt he could now go through it.

After posting my Ostomy Awareness Day photos and story on Facebook I was contacted by so many family and friends willing to support me in the future.

With the pandemic still active, I’ve been limited in getting out in the public but I do try to make an effort to encourage other ostomates daily.  I’ve connected with my local Affiliated Support Group leader and I’m looking forward to greater things once we can meet publicly.

On, March 6, 2021 I will be a 39-year ostomate.

I’m on Facebook and I have a Youtube video discussing my ostomy journey.

I’m free, living with my ostomy!

 

“Bottom line, I have my life back and I’m only looking forward.” – Josh Nelson

Ostomies are Life-Savers – and Coloplast is proud to be a part of helping spread the word on Saturday, October 5th for Ostomy Awareness Day!

For many people, it’s not often that intimate things – like an ostomy – are discussed openly … but at Coloplast, our passion centers around hearing real-life stories from people with intimate healthcare needs. As we listen, we strive to uncover unmet needs and respond with innovative product solutions to make life easier for people living with an ostomy. We bring this passion to listen, respond, and make life easier to work every day – and we’re proud to stand with the ostomy community in raising awareness of the amazing resilience of people living with an ostomy.

Do you live in the Twin Cities? Lace up your shoes and join our team for the Virtual Run for Resilience!

You, your family, friends, and pets are invited to join Coloplast employees, ostomates in the area, and their families for a “virtual 5K” run/walk/roll along the Mississippi River in Minneapolis, MN – starting at our US corporate office. Attendees should plan to arrive by 10:00 AM to gear up for the race. There will be groups of people both running and walking, so you can move at the pace at which you are most comfortable!

Before the run/walk/roll begins, we will have two guest speakers. Kiza Olson and Josh Nelson, who both have ostomies, will tell their stories, including how an ostomy was a lifesaver for them. Watch this short video from Josh* encouraging you to join us:

This event is open to anyone who wants to help support ostomy awareness. Looking for more information? Check out our Facebook event page. Feel free to join our team and sign up for the event at no cost on the Coloplast team page.

To help you prepare for the run/walk, brush up on some tips on sports and exercise with an ostomy on our Coloplast® Care site.

Don’t live in Minneapolis?

Visit the Coloplast booth at one of the 8 Run for Resilience events nationwide!

If you plan to participate at one of the run/walks held nationwide, make sure to stop by the Coloplast table and meet our local representative! We’ll be handing out free temporary tattoos so you can wear the “Ostomies Are Life-Savers” slogan proudly on your sleeve.

We’re proud to be a part of the effort to build awareness that ostomies are life-savers – and a key contributor to really feeling like you can “have your life back” is finding the right product fit. As bodies change over time – aging, gaining or losing weight, getting new scars or a hernia – it’s important to check that you still have the right fit. That’s why we developed BodyCheck: in 8 easy steps, this online tool will identify the best combination of product(s) to provide a secure fit to your individual body profile. At our booth, we’ll have information on using BodyCheck to ensure you still have a secure fit – and a free magnet reminding you to check your body as things change.

Take a selfie!

If you get the temporary tattoo or magnet –  we’d love to see how you display them! Snap a picture and share with us on social media with the hashtags #OstomyAwarenessDay #OstomiesAreLifeSavers  #RunforResilience

 

*Josh is a SenSura Mio user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

Editor’s Note: this blog post was provided by Coloplast Corp, a Gold Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization

National Ostomy Awareness Day is celebrated this year in the US on Saturday, October 5, 2019. At Hollister Incorporated, we are proud to stand with the broader ostomy community to show how we are #AllinforOstomy. We invite everyone to join together in spreading awareness or engaging in activities that can impact the day-to-day lives of people living with ostomies and their caregivers.

Participate in a Run for Resilience Ostomy 5K Event!

For some, the best way to celebrate and support ostomy awareness is to get out and enjoy the day, even better to do so together with the people we care about. In that spirit, we celebrate Ostomy Awareness Day again this year by supporting United Ostomy Associations of America (UOAA) as the exclusive Diamond Sponsor of the annual Run for Resilience Ostomy 5K events. The events help increase awareness about ostomy and continent diversion surgery and encourage positive dialogue. Bring family and friends with you to participate in one of these fun events nationwide. Many feature kids’ activities, a DJ, a division for people with ostomies, and awards. Visit ostomy5k.org to find a run near you. While you’re there, stop by the Hollister booth and say hello!

If you can’t make it to one of the live events, you can still participate by registering for a Virtual Walk, Run, or Roll at a location near you. Even a treadmill counts! This year Hollister Associates will participate in a virtual event near our Hollister Incorporated headquarters in Illinois, and at our distribution center in Stuarts Draft, Virginia.

Gearing up to participate in one of these events? Get in the mood with the All in for Ostomy playlist on Spotify.

Show off your Stoma Sticker on Ostomy Awareness Day or Any Day!

By wearing a “stoma” where people can see it, you can start a conversation, raise awareness, and show support for the ostomy community on Ostomy Awareness Day and every day. Place the sticker over your clothes on the lower right or left side between your navel and hip, where ostomies are typically located. Then, take a photo or video and share it on social media with the hashtags #AllinforOstomy and #OstomyAwareness. Because any day is a good day to support and celebrate ostomy awareness, Stoma Stickers are available for order year round! Visit stomasticker.com to order a free educational Stoma Sticker, shipped anywhere in the US.

Visit www.hollister.com/ostomyawareness to learn more!

 

Editor’s Note: this blog post was provided by Hollister Inc. the exclusive Diamond Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization.

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!

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!