Tag Archive for: ostomy awareness

The Impact of Advocacy: Healing Yourself and Uplifting Others

, , , , , , ,

By Nicole Richards

“When you stand and share your story in an empowering way, your story will heal you and your story will heal someone else.” – Iyanla Vanzant

I believe this quote accurately describes the importance advocacy is to the ostomy community. Living with an ostomy is a true test to one’s physical and emotional health. Raising awareness is sharing our own personal journey of those physical and emotional experiences with others. It’s only with this vulnerable truth, that we allow other ostomates to normalize their situation. Through advocacy we not only work on our own healing journey, but we inspire and support others on theirs.

This past summer I answered the call to take action from UOAA, and I filed a proclamation request with my state’s Governor for Ostomy Awareness Day. While writing the request I opened myself up to a very vulnerable part of my past that I had stuffed away and never fully processed. More specifically, writing the proclamation request made me realize just how much I minimized my own experience of what life was like pre-ostomy. Another realization I had was that I needed to be more compassionate and forgiving of myself for all that I had been through during that time. This was such an “ah ha” moment for me. I am very grateful for the opportunity I had to advocate and share my story. Had I not have taken the time to revisit the years of my life leading up to ostomy surgery I may not have had the opportunity to heal that part of my past.

The Power of Your Story

It is not only healing for ourselves; it is validating for others who are going through similar struggles. Telling your own personal story helps other ostomates feel less lonely on their ostomy journey; it creates connection and community. Talking about your experiences is not just an act of self-care but an act of service to others.

We experience life differently from one another. My perspective and experience could be completely opposite than that of the next person. With that being said, we tend to resonate with people whose journey is similar. Additionally, many of us not only have an ostomy, but we have an underlying health condition that brought us to the point of needing ostomy surgery. The fact that there are numerous reasons a person might need an ostomy makes us such a diverse group of people. This is why your unique ostomy story matters so much.

These personal stories are more memorable than facts, so they are indispensable in advocacy efforts.

By listening to other people’s perspectives and experiences we create awareness and learn something we didn’t understand. Telling your story is not only important for healing of yourself and others, but ostomies carry many misconceptions. Unfortunately, those misconceptions lead to stigmas and barriers. Through advocacy and sharing our story we aid in the breakdown of those barriers and collectively shed light on the realities of living with an ostomy. Equally important when it comes to advocating on issues for the ostomy community, your voice matters! By telling your story, legislators and policy-makers hear how their constituents are affected. These personal stories are more memorable than facts, so they are indispensable in advocacy efforts.

Based off my interactions with the ostomy community, I can almost guarantee most of us are willing to go out of our way to provide support to one another. Furthermore, I believe most ostomates feel a sense of purpose and fulfillment by helping one another. We are strong and resilient beings who have so many stories and experiences to pass on that could deeply encourage and uplift another in the ostomy community, provide awareness to future ostomates and those struggling with their ostomy.

So, where are you in your healing journey?

I recently read a book called “You Can Heal Your Life” by Dolores Hay. She refers to starting the healing process by “cleaning your emotional closet.” You go in, you pick something up, you examine it, then you either store it away for later or you get rid of it. I love this analogy because it allows you to briefly examine the emotion and decide if now is the time to process and release it, or store it away for later when you feel strong enough to do so.

Are there parts of your ostomy story that have been stuffed away in your emotional closet? Are you ready to look at it so you too can get rid of it? Are you ready to impart some of those experiences that may help others and provide awareness? Maybe through advocacy you can find healing too.

My guess is that if you are an ostomate reading this, you have a story to tell. A personal journey someone else would love to hear, connect with, and find encouragement from. You may keep someone else from feeling alone in their ostomy journey. You just never know who needs to hear from you and your unique lived experience!

Editor’s note: If you are interested in getting more involved with UOAA and advocating for the ostomy community, join their Advocacy Network. Have an ostomy supply or care access issue? Your story matters. Contribute your story for national advocacy. Or you can share your ostomy story on UOAA’s Wall of Love!

A Milestone for Ostomy Awareness

, , , , , , , , ,

 10 Years of the Run for Resilience Ostomy 5k

By Ed Pfueller, UOAA Communications and Outreach Manager

When people without ostomies pay to put on a pouch, fill it with applesauce, and then run a 5k- you know you are onto something. It was 2014 in Durham, North Carolina, and what started a few years prior as the ‘Wanna Wear One’ challenge for medical professionals to learn empathy for ostomy patients had now evolved into a community-wide ostomy awareness event.

The idea for an Ostomy 5k started after Lara DuPree, a WOC nurse at the University of North Carolina, discovered that there was not a 5k for the patients she was most passionate about. She reached out to friend Angela Richardson, a WOC Nurse at Duke, to help change that.

“I was like, I don’t know anything about that, but okay!” Richardson recalls. ­­Richardson had seen her grandmother and patients initially wish for death over an ostomy and knew more needed to be done to educate against stigmas.

DuPree reached out to United Ostomy Associations of America (UOAA) and found that though they were not experienced in such events they were willing to help build enthusiasm. The event was a perfect celebration of Ostomy Awareness Day recognized nationwide every October.

The event soon had a location on a scenic greenway in Durham, but still needed funding. The duo reached out to their ostomy manufacturer contacts and also hit the streets asking local businesses, like run shops, many of whom did not know what an ostomy was. “Each person we talked to was another opportunity to raise ostomy awareness,” Richardson recalls. They also got in-kind donation items for a silent auction that raised over $1,000.

Medical units of their respective hospitals also fundraised and challenged each other for the coveted “golden toilet trophy” engraved like The Stanley Cup! “It was a fun way to get people involved, a good conversation piece for anyone walking by the nursing station,” DuPree says.

A kids’ fun run and activities like face decorating, also make it a great family-friendly event. The organizer’s children grew up around the event and are now vocal and dedicated ostomy advocvates.

One ostomate runner that first year has since had a lasting legacy with the race, Sandi McBride.

McBride found “a ray of hope” in her fellow ostomates who completed the 5k alongside her. Sadly, McBride passed away four months later from Crohn’s disease complications. “The Ostomy 5k refueled her spirit and determination and she knew her ileostomy didn’t define her,” her daughter Keyla reported.

In her honor, the McBride Scholarship was created with a portion of the money raised each year. This gift enables a local person in need to attend a UOAA National Conference. “She was such a positive and inspiring person and had a big team of family and friends that came to support her that year and returned for several years after she passed,” DuPree says.

Lara DuPree and her mother Dani Osewalt.

After the success of the first year, the pair were excited to get the word out even more and found lots of enthusiasm at UOAA’s 2015 National Conference in St. Louis. “We wore our t-shirts all around and passed out pins to everyone who was interested,” Richardson recalls.

In the weeks leading up to the 2015 Durham race the importance of supporting the ostomy community became even more personal for DuPree, as her mother, Dani Osewalt, had ileostomy surgery after a return of colon cancer. DuPree balanced caring for her mother with organizing the race. Her mom was discharged on the day of the event, Ostomy Awareness Day. “It has to be symbolic of something,” DuPree thinks.

Osewalt is the 5k’s unofficial cheerleader, and the top fundraiser for the cause every year.  “I am beyond proud of the dedication Lara has for the Ostomy community that I am a part of. She inspires me, educates me and supports me as an ostomate and as her mother!” Osewalt says.

A Legacy Across the U.S.

In 2016, UOAA Executive Director Jay Pacitti worked to increase sponsorships and expand the event nationwide. “We had folks from all over the U.S. ask about starting an event. It was great to see people so passionate and willing to do what it takes to spread awareness through a 5k.” Pacitti remembers.

The event was also renamed the Run for Resilience Ostomy 5k. “We felt that the resilience just spoke towards persons living with an ostomy, rising above challenges and continuing to persevere through whatever it takes,” Richardson says.

2024 marks the 8th anniversary of the Birmingham, Alabama and Boise, Idaho Ostomy 5ks. This year events are also taking place in Arkansas, Ohio, Pennsylvania, Illinois, and Tennessee.

Millie Parker and her extended family participate in person or virtually each year.

Before the pandemic sidelined live events in 2020, UOAA volunteer Millie Parker usually flew to North Carolina with three generations of family members for the 5k. The Worldwide Virtual Ostomy 5k, now also in its 10th year, has allowed her to continue the tradition. “Now wherever we are, all 19 of us wear our Ostomy Awareness Day shirts each year to run, walk, bike, swim or kayak to celebrate my new lease on life,” Parker says.

Nationwide the Run for Resilience Ostomy 5k is the biggest fundraiser in support of UOAA’s programs and services. Since 2014 about 1,300 people have participated in the North Carolina event alone and it has earned almost $109,500. Nationally almost $494,000 has been raised in support of UOAA’s mission.

“The impact organizers Lara, Angela and now Jessica have made to the ostomy community and to UOAA over the past 10 years is absolutely amazing,” says UOAA executive Director Christine Ryan.

“It has been beautiful to see the ostomy awareness and communities that have blossomed around the Run for Resilience Ostomy 5k events all across the country,” says UOAA President Cheryl Ory.

Back in North Carolina, an impending Hurricane canceled the 5k portion of the event in 2022 but the popular silent auction was still a success. In 2023, despite pouring rain, smiles shined on the faces of participants crossing the finish line as a DJ welcomed them each in. Sponsors shared details of their ostomy products at their table displays and the Triangle Ostomy Support Group shared their local support resources.

Run for Resilience Ostomy 5k founders Lara DuPree, left, and Angela Richardson, center, had out a medal for the top female ostomate finisher at the 2023 event in Durham, North Carolina.

On Saturday, October 5, 2024 Lara, Angela and newest co-race director, Jessica Blakeslee, and their dedicated friends and volunteers are looking forward to celebrating 10 years of raising ostomy awareness at the Durham, North Carolina Ostomy 5k.

They look forward to encouraging ostomates to meet and celebrate their resilience. One of their favorite memories is when a supporter from Nebraska flew to North Carolina for the event. “She said, I’ve had my ostomy for 10 years, and I’ve never met somebody else with an ostomy, this is the first time. And she just started crying. She felt seen, it was amazing,” DuPree remembers.

They know ostomy awareness and education still has a long way to go and want their community to know that there is nothing a person with an ostomy can’t do.

Fittingly (despite the serious runners the timed race often attracts) the course record is still held  by an ostomate– Collin Jarvis.

UOAA wishes to thank all the volunteers and local and national sponsors that have made the Run for Resilience Ostomy 5k possible! Visit ostomy.org/5k to support the cause!

 

 

Why Larry David’s “Colostomy Bag” Curb episode is making me speak out about my ostomy after 48 years

, , , , ,

By Robin Bergstein Berman

The latest episode of Larry David’s, Curb Your Enthusiasm was called “The Colostomy Bag” and during an attempt to be humorous, his usually (awkward and despicable character) made disparaging comments relating to ostomates. At least it opened up room for discussion… It’s the first time that I posted on my Facebook page about my one-and-done Ileostomy surgery 48 years ago and I received nothing but words of support. I shared below why I found the episode harmful:

“Being an ostomate does not define me.” Says Robin, 63, and has had her ileostomy for 48 years, finding health and a full life after ulcerative colitis.

This is too important not to address so I’m about to “out” myself for those who do not know. Larry David’s, Curb Your Enthusiasm episode that aired tonight was called “The Colostomy Bag” and it was harmful for a few reasons. I’m able to laugh at myself but this was not funny mostly because it passed along inaccurate information and promoted public stigmas that could cost lives. Those who desperately need a life-saving surgery (for bowel diseases, cancers and more), often put it off far too long due to inaccurate public opinion including that of too many doctors.

There were three primary comments that were said, I want to address about the episode while giving only a glimpse of my journey. First of all, not all who have an ostomy have a colostomy and therefore do not wear ”Colostomy Bags”. Larry kept saying colostomy as if it encompassed all ostomies… it doesn’t.

Secondly, having an ostomy is not the worst thing that anyone could possibly have. He made it sound as if it is. It’s life-saving and has given me personally 48 more years of life to date that I wouldn’t have had without the complete colectomy/Ileostomy I was given in a nine hour surgery in 1975. I would not be here without it since I was bleeding to death and not able to recover after given the maximum doses of steroids for an extended period of time. Polyps, the breeding grounds for cancer cells were present and multiple were seen when my entire colon and rectum were removed at 15 years old. The pain I endured prior to surgery was unfathomable and I won’t here expand on all of what I experienced. I had the most severe chronic ulcerative colitis, spending weeks and months at a time in the hospital from 11 to 15 years old.

Robin with her two, now adult sons, whom she carried to term and had by emergency c-section after her ileostomy surgery.

Back to the episode; there is no such thing as a “shit in the bag look” for anyone thinking there is, like Larry. It was only slightly humorous in the context, but for someone facing this surgery and not knowing, there is no facial indications that we wear an appliance/pouch/bag. Now when he felt guilty about his comment to the car salesmen and wondered if he could gift a Louie Vitton Illeostomy Bag, that I’d like !!!…lol THIS was funny when Larry brought it up.

While they did say the car smelled like smoking, they alluded to it smelling like the man’s ostomy bag which is also not a “thing”. Popular public thinking is that ostomates smell, are unattractive, unappealing, not sexy or sexual and should be pitied. This too is not true. Within months after my surgery, I was at the beach away with my friend and her family, continued my relationship with my first boyfriend and went onto have others, didn’t miss a beat with school and countless other activities which were extensive and then went onto college away two years after my surgery. I’ve lived a full, active, useful life, carried both of our sons to term, working primarily but not exclusively in fragrance and cosmetics and certainly do not smell bad being told my entire life that I smell good (lol). In fact the first thing that attracted my husband to me was how I smelled at a bar after fragrance modeling all day.

I wear almost everything I want with some exceptions and am fashionable according to most. I’ve heard from too many that someone would rather be dead than to wear an ostomy bag. It’s the most absurd thing I’ve ever heard all caused by antiquated public opinion that is not valid and what this last episode of Larry David continues to promote.

I was going to wait until my 50-year anniversary with my ileostomy to reach out and make myself available but this prompted me to do it sooner.

Without fail when TV, even medical dramas, present ostomy surgery and the wearing of an appliance, they present it unfairly, wrong and impose additional stigmas. Don’t misinterpret me since adjusting to it sucks and there are challenges but it’s totally doable and makes a person no less the person they were in any way other than making them hopefully healthier.

If any one of you are facing this now or in the future, I am more than willing to help you or anyone you care about, to get through and adjust by listening, empathizing and giving you the tips and tricks I learned from a lifetime, 48 years, through all stages and phases of life.

Robin and her husband of 34 years.

It’s so much easier to find info today with social media than when I learned to adjust on my own without an ostomy, now a community is a click of a phone away and with laser surgery lessening the more invasive total cutting my body went through.

I was triggered tonight by the episode knowing how people are discouraged by doctors and the public’s misconceptions, I just had to address it not for me but for others. Ostomates are all ages and sexes and all walks of life including some professional athletes. Please let me know if you have any questions but mostly if you or a loved one are facing this life saving surgery, I’d be glad to help.If anyone would like to share my post, I’ll be glad to make it shareable by allowing public access. Let me know.

I was going to wait until my 50-year anniversary with my ileostomy to reach out and make myself available but this prompted me to do it sooner. I help where I can in the support groups and over 48 years ago tried forming a youth group here in Pittsburgh for ostomates, spoke to auditoriums full of high schoolers at various schools trying to discuss differences and acceptance for all and was always received well.  I went on a local talk show regarding my surgery back in 1975. Being an ostomate does not define me so I spend little time discussing it unless I can be of help or it’s in a relevant conversation, which it is this week!

Editors note: The humor of the Larry character in Curb Your Enthusiasm is often built around his selfish and ignorant views. In past episodes with characters who are disabled or have a disease, those characters are usually used to help magnify his faults. This episode did not include an ostomate character just the perception of what one would be like and what life would be like with one. The opportunity for awareness, such as what Michael J Fox brought to Parkinson’s in his past episodes, was missed. 

Want to get a more positive ostomy awareness message on TV and social media? Share UOAA’s Ostomy Public Service Announcement.

 

Convatec is proud to be the Exclusive Diamond Sponsor of the 2023 UOAA Run for Resilience

, , , , , , ,

We are so excited to be walking, running, or rolling in over six live events across the USA! Join us at a live event near you or participate in your own community virtually!

We’re couldn’t just celebrate one Ostomy Awareness Day, we’d rather celebrate #Ostober!

Join us on Facebook and Instagram as we celebrate a whole month of Ostomy Care!

Join over 350,000 me+ community members worldwide to help you find the right support to feel stronger, more confident and ready for what’s ahead. Our me+ program offers The ostomy products and support you need, tips and advice for living with an ostomy, and a community you can learn from. Have questions about living with an ostomy? Our me+ product specialist and ostomy nurses are waiting to help you, call 1-800-422-8811.

 

(Editor’s note: Convatec is the Exclusive Diamond Sponsor of this year’s Run for Resilience Ostomy 5k. Their support helps make these UOAA ostomy awareness events possible)

Even You Can Raise Ostomy Awareness

, , , , ,

By Jeanine Gleba and Ed Pfueller, UOAA

Do you prefer to work behind the scenes for change? Are you crafty and creative? Do you like to share on social media? No matter how you want to do it, UOAA encourages everyone in the ostomy community to do one little thing to raise awareness and smash stigmas this upcoming National Ostomy Awareness Day on Saturday, October 7, 2023.

One option is to just do something to celebrate having your life back after this lifesaving and life restoring surgery!  You are living proof that ostomies are lifesavers and that’s something to shout from the rooftops. With close to one million people living with an ostomy or continent diversion in America, we could really make some noise!

If you find yourself asking, “Well what can I do?”, check out the clever ideas below that people have shared with us and things that people have already started doing for #OstomyDay2023:

Arty Awareness

  • Bake it or order it. One nurse gets custom cookies made to share at her local ostomy awareness day event. Yum!

Social Media Awareness

  • Share Your Ostomies Are Life-Savers story. People have started sharing their personal stories about how having an ostomy has saved or changed their life with friends on social media. You can use our Instagram and TikTok video green screen as a background (found here) or simply print out this sign and take a selfie! Be sure to tag UOAA and use hashtag #OstomiesAreLifesavers #IAmLivingProof and #OstomyDay2023.
  • Social Stickers. Grab some attention for awareness with our “giphy stickers” or use the latest profile photo frame. Better still get some real stickers made and you can put them on water bottles, laptops, cell phones and more to raise awareness all year long! 

On the Scene or Behind the Scenes For Awareness

  • Mascots for Awareness. WOC nurse Linda Coulter has taken to getting every mascot she encounters to help spread ostomy awareness at sports venues and beyond. Online she shares all the fun #Mascots4ostomyAwareness photos. Also out and about is our friends @DoubleBagginit that spread ostomy awareness wherever they go with their clever #ostomybombs.

  • Walk or even sleep in for Ostomy Awareness.  Those not near a Run for Resilience event or who more are more inclined to sleep in can still donate to the cause while others often do an informal walk or even ride their horse as part of the Virtual Ostomy 5k.

  • Light up Your State Capitol. An advocate in Pennsylvania has worked with her elected official and the capitol building in Harrisburg, PA will be lit blue and green (UOAA official colors) recognizing Ostomy Awareness Day on October 7th between 6:30PM – Midnight EST! As this advocate wrote “Amazing what can happen when we open the dialogue!” The Capitol Building in Baton Rouge, Louisiana will also be lit to celebrate the day so inquire with your state!
  • Virtual Race Car. Someone else participates in the iRacing community. He painted his virtual racing car to raise ostomy awareness. Check out photos and story here.
  • Public Displays. In past years, nurses and others have done ostomy awareness displays at local hospitals or libraries or have hosted picnics with their support groups.

Give it some thought.  You might come up with your own unique idea!  If you do, we’d love to hear them, so send us an email at advocacy@ostomy.org.

Keep checking our webpage for all of the fun events that will be happening like UOAA’s Virtual Happy Hour on October 7th and other ways that you can raise awareness! 

 

6 Ways You (Yes, You) Can Make a Difference on Ostomy Awareness Day

, , , , , , ,

By Ed Pfueller, UOAA Communications and Outreach Manager

The ostomy community is a big group with diverse medical backgrounds, ages, and attitudes about living with an ostomy. One thing almost everyone can agree on is that ostomy and continent diversion surgery saves lives. We all hope for a day when no one who has an ostomy feels alone in life. Ostomy Awareness Day is Saturday, October 1, 2022 ­and however you are most comfortable participating – you can have an impact. Your voice matters and now is the time to use it or support others who do. 

If You’re Supportive but Busy

I had very little to go on, more to learn than I realized, and felt somewhat lost and well, scared. Discovering United Ostomy Associations of America (UOAA) when searching online for ostomy organizations and associations was a relief and godsend. -Myrna Pair

A couple of clicks is all it takes to put a smile on the face of a resilient ostomate or dedicated ostomy nurse. Check out the heartwarming stories of those on the Run for Resilience fundraising pages. Many of them still need a donation. The Ostomy 5k is the biggest fundraiser of the year for the programs and services offered by UOAA, a national 501 (c)(3) nonprofit organization. We have not met the Virtual Ostomy 5k fundraising goal of $25,000. Donating to UOAA, whenever you have the means, helps to sustain our small but powerful national ostomy organization’s work to improve the quality of life for people living with an ostomy, all year long.

If You’re Active on Social Media

Great, stop scrolling and go share your #OstomiesAreLifesavers story today! Even if you have never talked about it publicly before, consider letting your social networks know the things you have been able to do and witness in life after surgery. Help dispel stigmas and fear surrounding ostomy surgery, you never know which of your connections may have an ostomy or be faced with surgery someday. Post a photo, video or story and tag or DM @UOAA and use the hashtag #OstomiesAreLifesavers and #OstomyDay2022

Another quick and easy way to share your ostomy story is to complete the This or That Ostomy Edition, tag uoaa and post it to your stories.

If You’d Rather Work Behind the Scenes

You don’t have to post ostomy bikini pics to be an effective advocate. Anyone can call or send our action alerts to their elected officials. The U.S. Congress has designated official days for mountain biking and cowboys but not for Ostomy Awareness. This is because of a lack of congressional co-sponsors. Congressman Donald Payne (NJ) is introducing a Congressional House Resolution designating October 1, 2022 as National Ostomy Awareness Day and needs co-sponsors and/or support for this resolution. Contact your Congressperson and ask them to become a cosponsor, by contacting Shahryar M. Baig on his staff at shahryar.baig@mail.house.gov. You can take action here on all of our advocacy campaigns.

These @delta #flightattendants and #pilot were 100% on board to support #OstomyDay2022  – Peenelopie was very excited that the pilot got to hold her! (courtesy Stomagienics)

If You Just Want to Have Some Fun While Raising Awareness

Consider printing out our Ostomy Pouch Character name it, and take pics of it wherever you go Flat Stanley style; send us your pics or post on social media. To make it even easier use our Giphy stickers found here (or search @UOAA_Ostomy)

You can still register for an in-person Run for Resilience Event near you on Saturday (Birmingham is Oct. 8) and join what is often a party atmosphere of music, sponsor tables, food and games – in addition to walking/running. 

Also be sure to wear a stoma sticker from Hollister, the Exclusive Diamond Sponsor of UOAA’s Run for Resilience. Check out all the ways you can celebrate with Hollister.

If You Want to Get More Educated or Educate Others

If you want to get some WOC Nurse level information you’re in luck on October 1st. The WOCN Society is offering an education day event open to everyone free of charge.

For a more Ostomy 101 level of learning use our advocacy tools and infographics as a handout or post online. Feel free to use any of our materials on emotional support, ostomy myths, j-pouches or more.

The day after Ostomy Awareness Day you can also learn more about ostomies and mental health during a Facebook live event hosted by Crohn’s and Colitis Foundation in partnership with UOAA. 

 If You Want to Keep the Awareness Going All Month/Year Long

Here at UOAA we work on National Advocacy all year long. Sign-up for our advocacy action alerts and Monthly E-Newsletter. There is power in numbers, become a national individual member and be counted as an official member of UOAA’s ostomy community. You’ll also get a membership and stoma pin and among other benefits.

New this year, Convatec is planning “Ostober” to focus on ostomy awareness all month long. They are the Platinum Sponsor of our Run for Resilience Ostomy 5k and we’re thrilled to see them keeping the spirit alive all month long.

 

 

Visit our Ostomy Awareness Day landing page for more information this special day. Whatever you choose to do please let us know! If you have pictures, proclamations or stories to share send them to us at info@ostomy.org and don’t forget #OstomiesAreLifesavers

 

Celebrate and Support Ostomy Resilience

, , , , , , , , , , ,

By Robin Glover

The Run for Resilience Ostomy 5k is set to return for its eighth year beginning on Ostomy Awareness Day, October 1, 2022. This year’s event will feature both in-person races around the U.S. and the worldwide Virtual Ostomy 5k. Individuals and teams will be running, rolling, or walking to raise money and show their support for the critical programs and services of United Ostomy Associations of America (UOAA).

Ostomies Are Life-Savers

No matter their story, there are two things all ostomates have in common: incredible resilience and a life saved or much improved by ostomy or continent diversion surgery. The Run for Resilience 5k is a celebration of that. And while every participant can get a run t-shirt with “Ostomies are Life-Savers” emblazoned on the front, each of them have their own stories and reasons why.

For Sydney, a 23-year-old living with an ileostomy, she’s participating and fundraising for the Virtual Ostomy 5k to share the story of how ostomy surgery saved her life. She also wants to serve as an inspiration to other young people facing similar challenges and let them know they can “live the life they want because of the ostomy bag” and not in spite of it. Sydney exemplifies the resilience of the ostomy community.

Liz exemplifies that resilience, too. A month and a half after being diagnosed with bladder cancer, she underwent a radical cystectomy (bladder removal) with a total hysterectomy and stoma placement. Liz is now an advocate who wants everyone to know that her urostomy saved her life. She and a fellow UOAA Support Group leader are hosting a Virtual 5k walk in Cincinnati  because “we are living proof that ostomies are lifesavers and that you can have a fulfilling life with an ostomy.”

The need for an ostomy or other continent diversion isn’t always directly due to a medical condition. Stefphanie was hit by a drunk driver and underwent eleven surgeries in the two weeks following the crash and required both an ileostomy and a mucous fistula. Though hesitant to talk about it at first, she’s now thriving and wants to share her story to inspire others.

If you don’t want to run or walk yourself, consider shining a light on this resilience by supporting the fundraisers of people like these.

In Person Events Are Back This Year!

In addition to the Virtual Ostomy 5k which can be held anywhere by anyone, in-person Run for Resilience 5k events are back this year!

These events are family-friendly gatherings and a chance to share ostomy awareness in communities all around the country. Most events take place on beautiful parkland or waterfront trails. They also all feature an opportunity to visit with ostomy product representatives in person and visit other event sponsor tables. Race participants will also receive a goodie bag with promotional items and educational materials.

Don’t worry if you are not in running shape ­– do what you can. Walkers outnumber runners at many of these in-person fun runs. More serious runners looking for an event to attend however may want to travel to the Durham, North Carolina Run for Resilience Ostomy 5k as it takes place on a timed and certified 5k course.

Past participant Lianne Weller shared what makes these events special, “The 5k race allows other ostomates to build confidence and breakdown barriers to getting back into physical shape; going one step closer to their goal. I feel more confident and less self-conscious because I’m surrounded by individuals who have all gone through similar obstacles.”

As envisioned by the 5k founders, all locations will get an optional ostomy pouch provided by Exclusive Diamond Sponsor Hollister. Non-ostomates are encouraged to wear their ostomy pouches during the race. (Don’t worry. They’re easy to put on.)

The Arizona Run for Resilience Arizona 5k will have a great new location in Scottsdale on October 1st, 2022, with a 5k run/walk and a fun run for the kids.

The newest in-person event is the Miami, Florida Ostomy 5k taking place at the University of Miami Campus in Coral Gables on Saturday, October 1st, 2022, from 9:00 am to 3:00 pm. Organizer Ana Restrepo says the event will include food, drinks, games, giveaways, and more.

Other in-person Run for Resilience 5k events being held across the country in celebration of Ostomy Awareness Day on Saturday, October 1, 2022 are:

Vancouver, WA

Nashville, TN

Boise, ID

Birmingham, AL (October 8th)

(Please follow each individual link to get more information about times and types of races.)

 “I Intend to Be Victorious”

For every person living with an ostomy or other continent diversion, there’s a story of resilience to go along with it. A virtual participant who goes by Poo and Friends, is working to take their life back one step at a time and they “intend to be victorious.”

You can learn more about other participants of each race location or the worldwide virtual by clicking on the circle above their name and reading their story.

Don’t forget to click “Load More Fundraisers” to see them all, including Tanya who’s one of the many wonderful Certified Wound Ostomy Nurses (CWON) and Wound Ostomy Care Nurses (WOCN) taking part in the 2022 Run for Resilience Ostomy 5k.

Share Your Story Too

Are you someone who wants to help break the stigma around ostomies and be an inspiration to others? You’re encouraged to sign up, create your own fundraiser, and share your story. After all, the story of your journey can be what helps someone else make it through theirs.

To participate in the Virtual Ostomy 5k and get this year’s awesome Ostomies Are Lifesavers T-shirt in time for Ostomy Awareness Day you have to register by September 9th.

  • Run, walk, roll or pedal a 5k (3.1 miles) route of your choice. You can even use a treadmill!
  • Take pictures of yourself during your race and email them to info@ostomy.org or message or tag UOAA on Facebook, Instagram, Twitter, LinkedIn or TikTok
  • Hashtag your photos with #OstomiesAreLifesavers and #RunforResilience

Friends, family, members of the medical community, and anyone else who wants to support ostomates and celebrate their resilience are also encouraged to donate or create their own fundraiser. Fundraisers will receive special promotional items depending on how much they raise.

Help Support UOAA

Funds raised during the 2022 Run for Resilience Ostomy 5k will support United Ostomy Associations of America (UOAA), a 501(c)(3) nonprofit organization that provides national advocacy, support and resources for the 725,000 to 1 million Americans who have had or will have ostomy or continent diversion surgery. These surgeries are lifesaving and have allowed many people to return to living a healthy life.

To find out more about the Run for Resilience Ostomy 5k please visit www.ostomy.org/5k.

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

Ostomates Take on Their Toughest Challenge… Kids

, , , , , ,

People often wonder what to say to others, especially to children or grandchildren, when they first learn about an ostomy. While what kids ask can sometimes be surprising, their sincerity can brighten your day. Hollister Incorporated brought kids and ostomates together to learn about stomas for the first time. Hear what they had to say by watching this video –

About the Ostomates:

LeeAnne Hayden @leeannehayden

LeeAnne Hayden stepped away from a successful corporate sales career to build an online social selling business at age 40, and then was diagnosed with a rare form of cancer, which resulted in ostomy surgery. This would serve as her wake-up call to find ways to help herself and others overcome the stigma of living with an ostomy. Now, at age 50, LeeAnne has created a podcast called The Beautiful Bag. Read more about her story here.

Stephanie Bension @missbension

In 2004, when Stephanie was in high school, she was diagnosed with a combination of Crohn’s disease and ulcerative colitis. At 24 years old, she found herself in the emergency room faced with the reality of receiving an ileostomy. With time and support from her family, she started to share her story with others on social media. She is now a professional speaker who charms diverse audiences. She holds a degree in Radio-Television-Film from The University of Texas at Austin, which has allowed her to have unique experiences in several professional fields. You can learn more about her at www.stephaniebension.com.

Collin Jarvis @collinjarvis

Collin Jarvis was diagnosed with ulcerative colitis when he was a junior at the University of California, Berkeley. His body rejected drug treatment to the point where he lost 30 pounds and was sleeping 15 hours a day. Due to this, he underwent emergency ostomy surgery with the removal of his colon. Barely five years after his ostomy surgery, however, the news headlines screamed: “Collin Jarvis Runs Sub-2:30 in One of the Fastest Marathons Ever With an Ostomy.” As evidenced by his marathon-running success, Collin now has the wind at his back and a whole new purpose in life, including being vice president of Stealth Belt, an ostomy support belt manufacturer.

Hollister Incorporated is a proud sponsor of United Ostomy Associations of America and dedicated to delivering the highest standard of quality in ostomy care products. To learn more, visit www.hollister.com/ostomycare or call 1.888.808.7456.

Angie’s Story: Going Public about Her Ostomy After 38 Years

, , , , , ,

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!

 

Every Ostomate Has a Voice Worth Hearing

, , , , , , ,

Saturday, October 3rd, 2020 marks the 10th anniversary of Ostomy Awareness Day. In partnership with United Ostomy Associations of America (UOAA), Hollister Incorporated is proud to stand with the entire ostomy community in celebration. Every ostomate has a voice worth hearing and we aim to embody ostomy confidence of our worldwide community with #OstomateVoices.

Spread Positivity and Share Your Voice

We’re connecting and empowering our worldwide ostomy community to share their own unique experiences—their challenges, their achievements and the joys of their daily lives. Share your words of encouragement that have helped you along your ostomy journey. Your story might help someone who might be struggling. Using your words, we’ll create a unique social card that you can share with your friends, family, and community. Share your voice here!

Join Us for a Virtual Cooking Class

Join us for a virtual cooking class on October 3rd with private chefs Ryan Van Voorhis, a fellow ostomate, and Seth Bradley of Nude Dude Food™, one of Chicago’s most sought after private dining and catering services. Register today to connect with others in the community and cook a delicious meal. Register today!

For more resources on nutrition with an ostomy, check out UOAA’s Food Chart or download the “Eating with an Ostomy” Nutrition Guide.

Show Off Your Stoma Sticker

Stoma stickers are a great way to raise awareness, start a conversation, or show support. Order your free Stoma Stickers in time for Ostomy Awareness Day, shipped anywhere in the US.

Share a photo or video of your Stoma Sticker on social media using #StomaSticker to be part of the conversation. Or show off your Stoma sticker while running in your virtual Run for Resilience Ostomy 5K and share how you celebrated #OstomyDay2020.

Share your #OstomateVoices and personalize your next Instagram or Facebook Stories with the Hollister “Ostomate Voices” digital stickers. It’s easy – search “Ostomate Voices” in the GIF library when creating a Story and you’ll find the whole collection, including a UOAA lifesaver and Stoma Sticker!

For more resources and interactive ways to get involved, visit Hollister.com/ostomyawareness.

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.

Tag Archive for: ostomy awareness

Nothing Found

Sorry, no posts matched your criteria