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

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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

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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

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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’

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“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.

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

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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)

Resilience Story: Chris Seyler

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Chris Seyler joined the Phoenix (Arizona) Ostomy Support Groups during COVID times and met up with the group at a park ostomy meeting. Recovering from long term illness and recent surgery, he was ready to find his way back to normal life.

Chris was born in the Phoenix area. While growing up his parents taught him to be active in a team sport, exercise and stay away from bad habits in life.  Chris played basketball and ran track, being nominated for all state in both sports. Receiving a basketball scholarship, and motivated by teachers and coaches, Chris majored in Kinesiology and Science from The Master’s University and became a teacher.

While in college Chris met his wife Colleen, also a teacher. Their son, Nathan, shares his parents’ passion for teaching and athletics and was selected to be in a Disney running movie, MacFarland, USA. Father-Son teamed up to coach school teams in Track and Basketball, winning state Championships.

Following his passion, and inspired by his son, Chris started competing in more events. From 2003 to 2017 he competed in 5ks, 10ks, half and full marathons, triathlons, Ironman, and obstacle racing. It was after AZ IRONMAN 2013 that Chris was diagnosed with ulcerative colitis and started losing weight in 2017.  The next couple of years were tough; in and out of the hospitals for nutrition and dehydration and battling a bacterium in his colon.  Various medications and infusions did not help with easing the illness and emergency surgery was performed in 2019.

Weak from illness and surgery Chris retired from his full-time teaching job and put his running shoes aside.

As time went on and recovery was underway, Chris set a goal to run a 5k. Not able to keep up with his wife, she encouraged him to walk, jog, and run. Hydration was always important as part of Chris’ races, but not having a colon taught him he had to be even more diligent about it.  During Run for Resilience Ostomy 5k 2021, Colleen ran the race. Chris walked and rested with his dog…but he finished…and his passion was returning! While training he worked on improving balance and strength and was able to jog/run at the Arizona Run for Resilience Ostomy 5k in 2022. Chris will be participating this year on the Arizona Virtual Race Team as part of the 2023 Run for Resilience Virtual Ostomy 5k on October 7th.

Passionate about life after ostomy surgery; Chris is teaching part-time, is the Phoenix Ostomy Group Secretary and the Meeting Leader at HH Cowden Center ostomy meetings.

To learn more or sign-up for the Run for Resilience Ostomy 5k visit ostomy.org/5k. You can donate to UOAA fundraisers by Chris and other resilient participants here. 

Even You Can Raise Ostomy Awareness

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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! 

 

Celebrating Another Year of Ostomy Awareness Together

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Hollister is proud to support 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. Here are some ways you can learn something new, show your support, or connect with others in the global ostomy community.

Show Off Your Stoma Sticker

Stoma Stickers are a great way to raise awareness, start a conversation, or show support. Request your free stoma sticker today! For more opportunities to connect online, check out the Hollister Incorporated digital stickers pack on Instagram to enhance your Instagram posts and stories. Share a picture with yours on social media, using the hashtags #StomaSticker, #OAD2023, and #OstomateVoices.

Need help with using digital stickers on social media? Watch this quick tutorial.

Join the Run for Resilience Ostomy 5K Races

We are proud to continue supporting you as the Platinum Sponsor of the Run for Resilience Ostomy 5K events. Join in at an event location near you, or run, walk, or roll with family and friends in your neighborhood or park (or inside on a treadmill) in support of ostomy awareness.

Share Your Story with Us

For many people, ostomy surgery gives them a new chance at life, through helping to manage challenging symptoms, providing stability to daily routines, and even being able to do things they could not do prior to illness. These positive outcomes are why we celebrate! Every person’s journey, experiences, and interests are unique. Share your story here.

For more resources and interactive ways to get involved, visit the Hollister Ostomy Awareness Day page.

 

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

Resilience Story: Maria Sandoval

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Hi, my name is Maria Sandoval. I wanted to come on here and share my story with you. You may ask, why am I putting the Run for Resilience Ostomy 5k run/walk/roll together in my community? Because it has given me my life back.

In November of 2022 I had surgery to get an ostomy because my ulcerative colitis was getting worse. I was diagnosed with ulcerative colitis in 2012. Ulcerative colitis is an inflammatory bowel disease (IBD) that causes inflammation and ulcers (sores) in your digestive tract. Ulcerative Colitis affects the innermost lining of your large intestine, also called the colon, and rectum. In most people, symptoms usually develop over time, rather than suddenly.

In my case my symptoms did develop over time and things got worse in 2020. The medication I was put on was no longer working. My body was shutting down and therefore my doctor recommended colorectal surgery.

It’s important to me to shine light on ostomies and to give hope to my ostomy community in Arkansas and show them that they are not alone.

Me during a Remicade infusion for ulcerative colitis before making the choice to have ostomy surgery.

I had no idea what this surgery was nor did I know anyone that had undergone this type of surgery. The fear of the unknown put me off from having this done. I was fortunate to have a great surgeon with a great team who gave me all the information I could ask for. They were patient with me, and so understanding of all my feelings. They answered my questions and addressed my concerns. Having that information and having faith, helped me make the decision to have this surgery. I had hope for the first time since being diagnosed with ulcerative colitis.

Currently, it’s 2023 and I am 33 and I have my life back. For the first time in a decade I can honestly say I feel safe in my body. I have energy, I feel empowered and I’m here to share my story. Making the decision to have my colon removed and have an ostomy was the best thing I could have done for myself.

I am here to stop the stigma around having an Ostomy. I am here to highlight the positives of having one and how it has impacted my life.

I learned about UOAA through social media. I went to ostomy.org to look up what UOAA is all about and saw that they had a 5k run for Ostomy Awareness Day every October. I have always loved to run in races and thought how cool it would be if I could bring this run to my area. I contacted UOAA to see if they would like to have Northwest Arkansas be part of their Run for Resilience Ostomy 5k and they were more than happy to do so.

I was so proud to have finished the race. I wasn’t racing for time, rather, I was racing for me. My ostomy gave me back my confidence in running.

Me 19 days after my Ostomy Surgery.

The Run for Resilience Ostomy 5k is the major fundraiser for all the great things UOAA does. UOAA has great resources to help with recovery and one of those resources I happened to stumble upon is their support group finder. UOAA does a great job of locating support groups and WOC nurses in your area. Forever grateful for that! I also use their site for educational information, self-advocacy checklists, and finding events they have going on, like the Run for the Resilience Ostomy 5k and their National Conference.

By hosting and taking part in the Run for Resilience I hope to spread awareness on ostomies and continent diversion surgery. It’s important to me to shine light on ostomies and to give hope to my ostomy community in Arkansas and show them that they are not alone. That they have a community to go to.

My mother is helping me host our first event. I am so grateful to have my family help me through this journey. My husband and mother were my caregivers before and after surgery. Making the decision to have surgery was a difficult one, but they both helped me through it.

I hope everyone no matter of where they are out takes part in a Run for Resilience event near them or the Worldwide Virtual Ostomy 5k. I love sharing photos like the one here of a half-marathon I ran five months post-op! Everyone should go at their own pace and talk to their doctor, but for me I think it was one month after my ostomy surgery when I started to train for the half marathon. I took it pretty slow. I began by walking a mile and slowly worked my way up to a jog. By month four I was feeling great and feeling like my old self. I was so proud to have finished the race. I wasn’t racing for time, rather, I was racing for me. My ostomy gave me back my confidence in running.

I would run races here and there before my ostomy surgery. My ulcerative colitis would make it difficult at times to run, but when it was in remission I was happy to get back to running. I have always enjoyed running because it was the one thing I could control in my life. My ostomy gave that back to me. Ostomies are truly life savers!

To sign-up or donate to a Run for Resilience Ostomy 5k event near you visit ostomy.org/5k. Support or learn more about Maria’s event, the Rogers, Arkansas Ostomy 5k and follow her 5k on Instagram.

Take Back Air Travel Rights

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By UOAA Advocacy Manager Jeanine Gleba

Imagine having your ostomy leak during a flight and being denied access to the restroom. 

As part of our Advocacy Agenda, UOAA strives to protect the rights of people with an ostomy or continent diversion and eliminate discrimination at school, work, and elsewhere in their lives to ensure they are accepted as normal, healthy individuals. At the national level, we advocate for legislation that will improve their rights, protections and access. We currently have an opportunity to advocate for new protections and equal access for airline passengers with disabilities and improve air travel experiences.

We’ve shared in the past the answer to the question “Does an ostomy qualify as a disability?” in this blog. Not all disabilities are visible. People living with an ostomy, which is a physical impairment that affects daily living and requires a prosthetic to replace the function of the bowel or bladder, are a hidden disability group. People living with an ostomy should have airplane rights too.

Background  

The Americans with Disabilities Act does not cover disability rights in air travel. In 1986 President Ronald Reagan signed the Air Carrier Access Act (ACAA) into law. 

Every five years, Congress must renew the authorization for the Federal Aviation Administration (FAA). This provides an opportunity for federal lawmakers to examine the airline industry and propose any reforms or updates. The last renewal was in 2018 and it mandated the creation of a Bill of Rights for passengers with disabilities. An advisory committee was formed to advise the Secretary of Transportation on the air travel needs of these passengers. 

In 2022 the Department of Transportation released “Airline Passengers with Disabilities Bill of Rights”. This document describes the fundamental rights of air travelers with disabilities under the ACAA and its implementing regulation, 14 Code of Federal Regulations (CFR) Part 382. It is important to understand that this Bill of Rights does not expand the rights of air travelers with disabilities. They are a helpful summary of the existing law under the ACAA.  For example as explained in the seventh right, ostomates may not be aware that airlines must allow assistive devices as carry-ons in the cabin free of charge consistent with safety rules. This includes medical devices and/or a personal amount of medication that assist the passenger with his or her disability.  Your ostomy supplies are medical devices.

Present Opportunity for Advocacy

Despite the provision of the ACAA that prohibits disability-based discrimination in air transportation, many passengers with disabilities continue to have challenging and frustrating experiences. They experience significant barriers to and with traveling by air such as damaged assistive devices, inaccessible restrooms, inappropriate treatment of service animals and inadequate disability awareness and sensitivity training of airline and contractor personnel.

Enforcement of ACAA protections is limited to administrative action and civil fines. Unlike most other civil rights laws, the ACAA lacks a guaranteed private right of action; that is the ability to sue in court. Consequently, people with disabilities typically receive little if any compensation for personal injury or damaged property such as wheelchairs. 

The current authorization expires at the end of September 2023, so Congress is preparing to write a new 5-year authorization bill and vote on it in the coming months.

Representative Dina Titus (D-NV- 1) and Senator Tammy Baldwin (D-WI) have introduced the Air Carrier Access Amendments Act, which is a bill to protect the rights of passengers with disabilities in air transportation. To read the bill text and see the list of current co-sponsors go to H.R. 1267/S. 545.  The Act calls for improved air travel safety, accessibility and accountability. The Act has meaningful provisions such as:

  • Establishes a private right of action, allowing passengers with disabilities to sue airlines for damages in civil court
  • Ensures new airplanes are designed to accommodate the needs of people with disabilities by requiring airlines to meet defined accessibility standards. These standards will address safe and effective boarding and deplaning, visually accessible announcements, seating accommodations, lavatories, and better stowage options for assistive devices, which airlines would have to comply with five years after those standards were issued

We believe all airline personnel should receive sensitivity and awareness training on medical conditions that might need urgent access to a restroom during a flight. Lack of access to one during an unexpected pouch leak can result in an embarrassing and unnecessary accident. All travelers with disabilities should be treated with dignity.  Additionally, it is important for the ostomy community to have access to airline lavatories that provide accommodations (such as a shelf to place their medical supplies) for emptying/changing/disposing of an ostomy pouch and/or catheter in a safe and clean environment. 

The ACAA must be updated to improve access to air transportation for individuals with disabilities.  UOAA joins with other patient and disability organizations to support the Air Carrier Access Amendments Act of 2023 (H.R. 1267/S. 545). 

No person living with an ostomy should ever be discouraged from traveling, whether for work, to see family and friends, take a vacation, or go on a journey around the world. 

Get Involved

Below are ways you can get involved:

  1. Request that your elected officials become co-sponsors of the Air Carrier Access Amendments Act of 2023 (H.R. 1267/S. 545) and ask them to include the Act in the next FAA authorization bill. Take action here.
  2. Organizations such as United Spinal and wheelchair users are demanding airline accessibility. They are sharing their #JustPlaneWrong stories on social media.  Share your experience on social media using hashtags such as #JustPlaneWrong, #TravelwithDignity and #AirTravelRights and tag @UOAA on Twitter or @UOAA_ostomy on Tik Tok or @uoaa_ on Instagram. 
  3. We need many people to join the cause. Please spread the word with your connections on social media, email contacts and encourage your family, friends, and colleagues to engage with us. You can share this link.

Together we can protect the rights of passengers with disabilities in air travel!