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!

We Are Living Proof Ostomies Are Lifesavers

, , , ,

Fall Into Ostomy Awareness

, , , , , , , , ,

Ostomy Day or Ostomy 5k- This is the Time to Get Involved

Whether you attend an in person or virtual event, make this be the year you get off the sidelines and discover the power of ostomy awareness. Learn more about all the ways to get involved on our Ostomy Awareness Day (OAD) web page.

“Ostomies Are Lifesavers” – this simple message can pack a big punch when you hear it from someone you know. Whether you post to friends and family on social media or confide in a few people, it can help dismantle stigmas and open hearts and minds. Everyone benefits when you state “I Am Living Proof that Ostomies Are Lifesavers” and reflect on the life you have enjoyed because this surgery exists.

To share your message with UOAA and others consider sharing a video, photo or statement on our online Wall of Love. #IAmLivingProof #OstomiesAreLifesavers

Virtual events to celebrate OAD

Events this week kick-off on Thursday, October 3, with a special Virtual Art Expression Class in collaboration with Connecting Pieces. Have fun, experience some artful healing and connect with others to decorate an ostomy pouch or anything you’d like. Register today! $10 child, $25 Individual, $35 Group

On Saturday, October 5, Ostomy Awareness Day, WOCN® Society is hosting a virtual Ostomy Education Day. Caregivers, medical professionals seeking CRE credits, and anyone in the public wanting to learn more about ostomy care are welcome to join this free event.

On Saturday you’ll also have the chance to connect directly with our inspiring Ostomy Awareness Day Champion Kimberly Holiday Coleman. Visit UOAA’s Instagram Page @UOAA_ at 12 noon Eastern Time (9am Pacific Time)  for a special Instagram Live Q&A – and feel free to ask her anything!

The Ostomy 5k- Not just for Runners

It’s a celebration of resilience and a gathering of ostomy awareness supporters no matter how far you can walk, run or roll. Virtual 5k participants have gone the distance by using a treadmill, swimming, kayaking, riding stationary bicycles, and even horseback riding! Be sure to share your photos no matter where you do it! 

The in-person Run for Resilience events are a mix of timed runs and fun runs as well as scenic walks and all are very family-friendly. Registration is still open and everyone is welcome to participate or simply gather and cheer on the resilience of the ostomy community!

The events are held on scenic greenway and park locations in Durham and Birmingham, city walkways outside Chicago in Downers Grove, riverside trails in Nashville and Northwest Arkansas, to mountain valleys in the Poconos of Pennsylvania and Meridian, Idaho.

The Trumbull County Ohio walk/run is ready for any weather. It will take place on an indoor track at the Niles Wellness Center. They’ll have a free mobile health screening service, a raffle and refreshments.

 

Locations like North Carolina are just as well known for their amazing silent auction items that are not to be missed. Local DJs, like Susie Q in Rogers, Arkansas, add to the festive atmosphere of these events.

All events have snacks and hydration and a variety of local and national sponsors’ tables to visit.

Celebrate with our Run for Resilience Sponsors

Sponsors add to the fun and awareness atmosphere of our Ostomy 5k Events Nationwide.

Coloplast is the Exclusive Diamond Sponsor of this year’s Run for Resilience Ostomy 5k. Representatives will be on hand to answer your questions and show off supplies at the events nationwide with the exception of Alabama. Check your race bags for a special sticker and magnet as well. Coloplast is also hosting an Ostomy 5k event for staff on the campus of their Minneapolis headquarters.

Revel, a new national sponsor this year, is excited to be a part of Ostomy Awareness Day and  proud to be supporting UOAA’s mission to advocate for the ostomy community. Revel will be hosting a “no-pancaking” breakfast with a full waffle bar at the founding race in Durham, NC! They’ll also be serving up samples of It’s in the Bag and free swag at booths in Durham, NC; Niles, OH and Downers Grove, IL.

Hollister is proud to be a returning sponsor this year and will have representatives and fun activities at all the national event locations. As we approach #OstomyAwarenessDay on October 5th, Hollister wants to hear about your plans to celebrate the ostomy community! For ideas on how to get involved, take a look at their activities.

Other Gatherings Nationwide

For more opportunities to meet others and learn about ostomy products check our UOAA Event Calendar for info on Ostomy Fairs and Affiliated Support Group gatherings being held to celebrate the day.

Don’t forget to let us know how you choose to make a difference on this day or in the future. Whether you got a proclamation passed where you live, or want to model that ostomy awareness t-shirt we want to see it! Email us at info@ostomy.org.

Awareness Saves Lives: Celebrating Ostomy Awareness Day

, , , , , , ,

By UOAA Advocacy Manager Jeanine Gleba and UOAA Communications and Outreach Manager Ed Pfueller

“If you believe in great things, you may be able to make other people believe in them, too.” ~ Oliver Wendell Holmes

UOAA’s greatest national advocacy effort to raise ostomy awareness is Ostomy Awareness Day. It is held annually on the first Saturday of October. By raising awareness that this is a life-saving surgery we are steadily dispelling fear and misconceptions and erasing stigma. 

The most significant aspect of Ostomy Awareness Day is that we empower people living with ostomies. Every time a person raises ostomy awareness, it has the power to save and transform lives. They show the world their resilience and that they are leading fulfilling lives with their ostomy.  

Get inspired to share your story after listening to this year’s Ostomy Awareness Day Champion Kimberly Holiday-Coleman share her story.

A simple way to share your personal story about how having an ostomy has saved or changed your life is with your family and friends on social media and use the hashtags #OstomiesAreLifesavers,  #OstomyDay2024 or #IAmLivingProof and tag UOAA.  You can also share our #OstomiesAreLifesavers “giphy stickers” on social media (search @UOAAOstomy).

Even if you are not on social media you can click here to record a video automatically or leave a text response or photos for our online ‘wall of love’ gallery of “Ostomies Are Lifesavers” stories.

We hope you can attend the festive atmosphere of one of our eight Run for Resilience Ostomy 5k events around the country or share a photo in your Ostomies Are Lifesavers t-shirt you get when registering for the Virtual Ostomy 5k. However you choose to celebrate, let us know!

To raise much needed ostomy awareness in your community please consider writing a Letter to the Editor of a local newspaper or work behind the scenes by sharing our Ostomy Awareness PSA videos with your local TV outlets. 

To kick-off the weekend events UOAA is partnering with the nonprofit Connecting Pieces for a Virtual Art Expression Class on Thursday, October 3, 2024 at 6:30 pm ET. Bring an ostomy pouch for a healing and fun creative exercise with whatever simple art supplies you have at home. All are welcome! 

On Ostomy Awareness Day on Saturday, October 5, you can also “Ask an Ostomate.” Our Ostomy Awareness Day Champion Kimberly will be hosting Q&A on UOAA’s Instagram @uoaa_ Live at Noon (11am CT).

We hope you’ll join UOAA and the ostomy community and make a difference too! Keep checking our Ostomy Awareness Day webpage for all the ways you can raise ostomy awareness on October 5, 2024.

PS. Awareness doesn’t just happen overnight or in one day. Learn more about raising ostomy awareness all year long within our “How to be an Ostomy Champion” toolkit.

Resilience Story: The Wheelin’ Sportswoman

, , , , ,

By Ed Pfueller, UOAA Communications and Outreach Manager

Elizabeth Shank was paralyzed in an accident at the age of 20 and has had an ostomy for the past year. She continues to embrace the things she loves most.

Shank, 50, became an outdoors enthusiast during her life with a wheelchair. For almost a decade, she had the dream of obtaining a specialized trackchair to facilitate her access to fishing, hunting and camping locations.

Shank’s spirit of resilience and determination caught the attention of the Mahoning County (Ohio) Federation of Conservation Clubs and they helped rally several civic organizations to the cause of raising the $24,000 for the trackchair.

She shed tears of joy earlier this year when they surprised her with (not only a new trackchair) but a customized trailer with her name and the logo “The Wheelin’ Sportswoman” emblazoned on it. “I can now go over rocks and get more places,” Shank says.

Her love of skeet shooting and hunting has only grown over the years by working with the National Turkey Federation and people dedicated to getting disabled veterans and other people like her access to the outdoors.

Shank has lived a very active life with her husband of 23-years and a 14-year old son. In addition to sporting pursuits, she has enjoyed horseback riding and volunteering with local nonprofits.

In 2007-2009 she was twice awarded 1st runner-up in the Ms. Wheelchair Ohio competition.

She started a new job about two years ago and was enjoying good health. Then, unexpectedly she was hospitalized with a serious intestinal illness.

Shank was diagnosed with ulcerative colitis. Because of the location of her T-12 L-1 spinal cord injury, she did not experience the pain symptoms of the sickness.

In July and August of 2023 her hospitalizations became more frequent and life-disrupting. “That’s when it finally beat me. It got to the point when I could not have any happiness, I’d get sick and my gut would retaliate and I’d end up in the hospital again,” Shank remembers.

“To me the ostomy has been a lifesaver.”

In the last incident, she was taken by ambulance to the hospital because of pain and it was determined she had pancolitis of the whole colon. “They said there is nothing else we can do for you, you’ll need to go to the Cleveland Clinic.” Ileostomy surgery came next. “I was not reluctant because I knew it would help me,” she says.

“Funny thing is, once I had that ileostomy that next morning they came into take my blood pressure and it was back to normal after being very high.”

Despite having her colon removed on September 19, 2023, the next month she was back out in the field hunting. Things were turning around for her with the help of the ostomy.

“I could be who I was before, not always feel down, always worried and not wanting to do anything or have fun,” Shank says with fondness.

Shank did experience some typical issues such as sores however and reached out to a Facebook group for women with ileostomies.

There she met Angie Davenport an ostomy advocate and UOAA volunteer.

“When I was down Angie was very helpful and sent me messages of encouragement,” Shank says.

“Although we haven’t met in person yet, I feel she’s a very close friend just from our interactions and being able to give her encouragement concerning living with an ostomy,” Davenport says.

Davenport is the race director for the Trumbull County Run for Resilience Ostomy 5k in Niles, Ohio this year on Ostomy Awareness Day, Saturday, October 5 to benefit UOAA. She is also founder of the nonprofit Blessed with a Bag.

“I’m hoping to meet her at one of our local ostomy support group meetings or the October race. She’s definitely an Ostomy Warrior and an inspiration to other ostomates,” Davenport says.

“I’m looking forward to going around the track. I just want to go and help her out, with everything she helped me with,” Shank says of the Ostomy 5k event.

The message of Ostomy Awareness Day resonates with Shank.

“To me the ostomy has been a lifesaver,” she says.

“I’m open about things and was a mentor for spinal cord injuries so would help others with an ostomy as well.”

“If somebody did not quite know or was having a hard time I could tell them my story and let them know it will get a little easier, but it takes time,” Shank shares.

Shank says she is not shy about her ostomy. “l will let people know if it’s talkative or releases gas I will say ‘hey she’s a little talkative today,” she laughs.

“It’s part of me and has helped me live my life fuller then when I was sick with the ulcerative colitis.”

As for the rest of her Fall plans besides Ostomy Awareness Day? “You can find me in the woods,” she says. It’s hunting season after all.

 

To learn more or sign-up for the Run for Resilience Ostomy 5k visit ostomy.org/5k. To celebrate the resilience of the ostomy community donate to the Niles, Ohio Ostomy 5k and UOAA here. 

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!

 

 

From the Stage…to Ostomy Surgery…To the Big Screen

, ,

Short Film Inspired by Ostomate Set to Premiere at a Los Angeles Film Festival

Written by Raimo Strangis

My ostomy journey began back in 2004. I was in my early 20’s and the frontman of a rock band, called Cranney. We started gaining a little buzz in the Toronto rock scene, playing all the historic venues like El Mocambo, Lee’s Palace, and the Horseshoe Tavern. Things were going great. Then, I started feeling really sick, but I ignored it. Finally, I went to the doctor and was diagnosed with ulcerative colitis. I had never heard of it. At first it was manageable; some stomach cramping and urgent bathroom runs. Medication was working and Imodium was my best friend. Suddenly, my condition got much worse. The urgency, blood, and cramping would come on like an avalanche. I exhausted all the medication options, and nothing was working, except for steroids, which is not a longterm solution. I lost a lot of weight and would plan my routes knowing where the best public bathrooms were. Every time I entered a building, I immediately needed to know where the washrooms were. There were days when I wouldn’t leave my room, let alone my house. I canceled shows, stopped going out with my friends, and skipped family outings. This behaviour turned into depression and anxiety, eventually ending the band and my musical career. I felt like I lost my purpose, which led to some dark nights and even darker thoughts.

My doctors recommended ostomy surgery. I had never heard of that either. After doing some research and being young and naive, I said there’s no way I’m doing that. So, I suffered for ten long years. Finally, in 2014, in my 30’s, married and with two kids, I decided to have ostomy surgery. It was the best decision I’ve ever made. No more pain, suffering, or worrying about bathrooms. I was free to live my life again and I didn’t care what people thought.

It’s easy to look back now and say, I should have just had the surgery sooner, I could have kept playing music. But when you’re in the moment, faced with a life-altering surgery, the fear, shock, and hopelessness is blinding. With no examples or stories of people going through the same struggles, I felt alone. This is where I knew an important story needed to be told.

The film captures a pivotal moment in time. Rai, a musician who just had ostomy surgery, is isolating at home struggling to come to terms with his new reality.

In 2020, I wrote a book titled, With Little Means. In the book, I tell a story of an aspiring musician who gave up on his dreams after ostomy surgery. The book fell into the hands of actor/producer Micheal Pillarella. He was moved by the story and felt it had potential to make an inspiring film. Together, we began working on an early version of a script.

Then, we knew we needed a great director to bring our story to life. Dan Abramovici is an award-winning writer/director, with his films being featured in acclaimed film festivals around the world. Dan’s vision was not your typical PSA, but an honest, real, film festival worthy short film. Once Dan and fellow screenwriter Liam Gareau, took over the script writing duties, a compelling story began to unfold.

Next, we needed a film production company to put it all together, that was Stagg Forrest Films. With a combined passion for storytelling and a wealth of experience, Myrthin Stagg and Kate Forrest were committed to creating an engaging and thought-provoking film that would resonate with audiences worldwide.

Then, we needed a cast of talented actors. Once Michael committed to the lead role of Rai, and actress Karen Knox came onboard to play the eccentric bandmate Isla, we knew we had the right actors to deliver a compelling performance.

Finally, we felt it was important to have the support of an organization that shared our vision and belief in the cause. Being a member of an ostomy support group, Barrie branch, I knew who I needed to contact, Ostomy Canada Society. John Hartman, recently retired and former Executive Director of OCS, from our first conversation, felt a strong connection to the story and was excited to get involved. Thus, a short film was born, Stuck.

STUCK – Teaser from Dan Abramovici on Vimeo.

The film captures a pivotal moment in time. Rai, a musician who just had ostomy surgery, is isolating at home struggling to come to terms with his new reality. Haunted by his deepest fears, he’s given up on his music career. Enter Isla, his eccentric ex-bandmate. She’s there because she desperately needs him to play a show that night, but also because she cares. The conversation escalates, and Rai says things he wishes he hadn’t, pushing Isla away. He’s afraid to get back on stage. After a moment of reflection, Rai grabs his guitar and begins to play for the first time in a long time. Will he play the show that night? We don’t know. But at least he’s picked up the guitar and is playing music again.

The short film will have it’s world premiere in Hollywood, California at the historic Chinese Theater on Sunday June 23, 2024, at 2:45pm, as part of the Dances With Films festival. The film will be submitted to international film festivals around the world.

I hope by telling a story like this we can bring comfort to those who may be suffering as I did. I thought having ostomy surgery would ruin my life, but instead it gave me my life back. Please join us on this special day as we celebrate a film that features a character living with an ostomy.

 

Editor’s Note: For tickets to the upcoming premiere of Stuck in Los Angeles visit https://danceswithfilms.com/STUCK/

Ostomy Advocate Makes a Splash in Commercial

, , , , , , ,

Advertising students at BYU put a spotlight on ostomy awareness in creative commercial. 

The students could focus on anything they wanted for a final advertising project at Brigham Young University in Utah, but they knew they wanted it to be meaningful. After spending days thinking about a direction for the project Art Director Jane Reese and Copywriter Nate Nielson made a connection that they both had family members with ostomies. “We didn’t know until we were much older because they were very private about it and it felt like some kind of “secret”. That’s when we came up with the idea of “uncovering” your story,” says Nielson of the ad they conceived with the brand Hanes in mind.

Jane Reese has had eight family members with a colostomy. “A lot of people do not know what they are and we wanted to spread awareness and help do whatever we could,” Reese said during a break in the filming.

“We wanted the ad to highlight the emotion that our family members felt and at the same time illustrate that it’s normal to have medical conditions and no one should feel embarrassed or shamed by them,” Nielson says.

When Nate Hadlock, who is a member of UOAA’s Patient Advisory Board learned about the project he jumped at the opportunity to be involved.

“Ostomies often change a lot about a person’s life and how they view themselves, so seeing a beautiful video like this, along with the overwhelmingly positive response to it, can give ostomates new courage and confidence,” Hadlock believes.

The beautifully produced film project features Hadlock and several other ostomates living life to the fullest. Hadlock is seen in the commercial diving and gliding through the water swimming while wearing a Stealthbelt cover over his ostomy pouch. The image itself is powerful because of the hesitancy some ostomates may experience because of misinformation about swimming with an ostomy.

“I am extremely grateful that I was able to be a part of this project. The actual film day of making the ad was so much fun! The students could not have been more professional or treated me better. It was a special moment in my life! ” Hadlock says.

Hanes-Uncover Your Story from jane reese on Vimeo.

Nielson credits getting Hadlock on board with encouraging other people to be featured in the project. We wanted to show people of all backgrounds, because these conditions, can affect anybody,” Nielson says.

A voiceover of the Maya Angelou Poem ‘One Human Family’ is featured in the ad and reminds us that we are “more alike than we are unalike.”

“Though we all have different marks, scars, and stories, underneath we are all human. Everyone deserves to be proud of who they are,” Reese said of the project on a post on LinkedIn.

Hadlock feels that the message of the ad itself and the project as a whole can really help with ostomy awareness. “Ostomates need to see that they belong in this world as much as anyone else. If I had seen this ad 14 years ago, when I received my ileostomy, it would have changed my entire outlook on ostomy life and what I was going through,” he says.

In a YouTube video Hadlock shares a special behind-the-scenes look at the filming and more reflections on the project in the context of the often negative portrayals of ostomies on TV and in popular culture.

“Ostomies often change a lot about a person’s life and how they view themselves, so seeing a beautiful video like this, along with the overwhelmingly positive response to it, can give ostomates new courage and confidence,” Hadlock believes.

I have already been contacted by multiple people about how this “ad” has legitimately helped them, or somebody they know! Hopefully, ostomates who see this will realize, even if only a little bit more, that they are beautiful, capable, worthy of love, and definitely not alone.”

Other students who worked on the film came away with a new understanding of the ostomy community.

“I had my eyes opened to a whole other world- a world that so many around me live in daily, but that I had no idea of its existence. I was able to meet amazing people who shared with us their journey with an ostomy. If you are struggling with shame, embarrassment or any other thing because of your ostomy, know this: you are SO strong and you are capable of anything you put your mind to! “ says director Taylor Steadman.

Though the company Hanes was not involved in this project the ad has the look and feel of a full-scale professional production and is a credit to the talents of the student team.

“We wanted the ad to highlight the emotion that our family members felt and at the same time illustrate that it’s normal to have medical conditions and no one should feel embarrassed or shamed by them,” Nielson says.

“I’m very grateful for the opportunity to work on such an important project, and I hope that my cinematic choices made in this commercial helped capture the experiences and feelings of these incredible individuals,” said Spencer Nelson, Director of Photography.

Hadlock feels that helping with this project was a chance to do something uniquely meaningful. “I spent decades not wanting to ask for help or talk about the medical side of my life with anyone. However, becoming more active in this community has taught me so much and truly changed my life. I have also seen the tangible and intangible ways that my own advocacy can help others.”

That’s why I’m grateful to be involved in advocacy efforts with UOAA and why I plan to be a part of many more projects like this video in the future,” says Hadlock.

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.

 

Ostomy Advocates in the ‘Room Where it Happens’

, ,

“One person can make a difference, and everyone should try.”
– President John F. Kennedy

By UOAA Advocacy Manager Jeanine Gleba
UOAA Executive Director Christine Ryan

During UOAA’s annual call to action in 2023 for state proclamations recognizing Ostomy Awareness Day, one of our advocates, Anne Iahdini, a fellow ostomate living in Massachusetts, contacted her State Representative, Rob Consalvo, and so the snowball effect began. Representative Consalvo’s legislative aide Emily Carraro responded with a resounding ‘yes’, resulting in a resolution being adopted by the Massachusetts House of Representatives on October 2, 2023.  But they didn’t stop there.  The Office of Representative Consalvo extended an invitation to host a special ostomy educational/awareness event at the Massachusetts state capitol in Boston. Anne reached out to UOAA for support with planning the event.  

Photo from left to right Sarah Tompson, Keyla Caba, Representative Rob Consalvo, Representative Kate Donaghue, Representative Paul Donato, Christine Ryan, Ava Hosea, Sophie Harmon; Photo courtesy of Emily Carrara in the Office of Rep. Consalvo

After many months of planning and coordinating, several extraordinary ostomy advocates (Keyla Caba, Sophie Harmon, Ava Hosea and Sherry Thomas), one passionate certified WOC nurse (Sarah Thompson), and UOAA Executive Director, Christine Ryan, brought down the house on January 31, 2024, that is the Massachusetts State House, with their informative and inspiring presentation!  The audience was filled with several Massachusetts legislators and/or their staffers from both the Senate and House of Representatives, WOC nurse supporters and other ostomates from around the state. 

The group provided light refreshments for the audience, UOAA materials and gave a  presentation that offered a brief overview of ostomy surgery and ostomy supplies along with challenges and issues that many living with an ostomy face. UOAA created a fact sheet handout for the event entitled “Access Matters” that included some of the “Bay-stater” patient testimonials. For example, Keyla shared “Having an ostomy is hard enough. Add insurance denials, costs, and access to the journey it becomes an added stressor to having a device. Not knowing if I will have enough supplies at the end of the month gives me anxiety. Not knowing if I am going to receive the correct amount of supplies every month is like opening a box of chocolates. I never know what I will get.” 

Photo from left to right ostomy advocates Sophie Harmon, Keyla Caba and Ava Hosea; Courtesy of Keyla Caba

Christine also read a letter that UOAA received from Massachusetts resident James McNiff, a disabled marine corps veteran who was diagnosed with bladder cancer at Camp Lejeune while in service of his country and now lives with a permanent urostomy.

Each young woman spoke from the heart sharing their personal story and the challenges they experience with access to their ostomy supplies and the stigma faced living with an ostomy.  For example, Ava explained that she has to put medications through a feeding tube into her distal stoma two times per day. This requires two ostomy pouches per day, which is sixty per month. Her insurer MassHealth WellSense has an approved quantity of 20 per month. Her prescription gets denied every year and has to be appealed several times. She has been shorted ostomy pouches so often that she has had to make them using Ziploc Freezer Bags and medical tape on numerous occasions. The average resolution time for insurance denials has been 5-6 months before they can stop making telephone calls and her ongoing orders are correct. “This disrupts critical continuous care and causes undue emotional stress to people already going through physical duress.”

Sophie focused on the importance of emotional support and shared that she has experienced both prejudice and ignorance towards her ostomy and this takes a large toll on mental health. “Emotional support can be just as important as physical support in ostomy aftercare. The stigma around ostomies must end with increasing education and awareness.” 

The little snowball is gaining momentum and ostomates in Massachusetts are making a difference! 

The speakers stressed that positive patient outcomes depend on having the right ostomy supplies at all times. They should be given the same degree of urgency as medications. Their passion, expressing their desire for change, not only for themselves, but fellow ostomates who experience similar issues, moved many in the room.

They asked their elected officials to introduce and support legislation in the Commonwealth that would make the insurance approval process for ostomy supplies and medications easier for ostomates. 

They received an overwhelming response from the audience and Representative Consalvo is going to work with the advocates this year to introduce legislation in 2025 to make improvements in regards to access to ostomy care and access to supplies. If this legislation passes, it could become a model for other states.

The little snowball is gaining momentum and ostomates in Massachusetts are making a difference! 

UOAA would like to personally thank everyone from the ostomy community who attended this event, especially our patient advocates who were willing to share their very personal journey and struggles, and Anne Iahdini, who took the first step to make this happen.

UOAA has received enthusiastic feedback from this successful advocacy event. If anyone is interested in spearheading a similar event in their state, please contact UOAA Advocacy Manager, Jeanine Gleba, at advocacy@ostomy.org. Guidelines will be made available later in the year.