My UOAA Story- Stanley Cooper

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20 years ago, UOAA formed and continued a legacy of advocacy and support for the ostomy community.

I had my Ostomy Surgery in 1992 due to ulcerative colitis. At that time the national organization for our community was the United Ostomy Associations (UOA). Around that time UOA was working on a project to increase the allowable amount of ostomy supplies a person can order. They wanted to double the amount that a person could order, because if a patient had skin problems or leakage problems a person would need more supplies than normal.  As it stood the allowable wasn’t enough and if a person needed more they had to be paid for out of pocket and UOA members were calling to see if something could be done. That was the start of the Advocacy program at UOA.

When UOA folded in 2005 former members put together the new organization, United Ostomy Associations of America (UOAA) it was determined that the new organization would have an Advocacy Program from the start. That was a confirmation to us all, as to how important an advocacy program is to UOAA and its members. Today, that legacy continues with an active advocacy network and national advocacy goals everyone should be involved with.

When I had my surgery, I was a married man with four daughters and worried about the future and whether I would be able to provide for them. My ET Nurse (Entrostomal Therapist), today’s WOC Nurse, gave my wife information on the local support group. My wife and I attended a meeting and after talking to a few attendees, I began to feel a lot better about myself.  I was so appreciative of the Information that I had received that I decided I needed to do more and at the next meeting, they had sample letters that they were asking people to type up and send to their senators. One member brought the letter back after a UOA National Conference and made copies of it. My brother had given me his old computer and printer so I retyped the letter up and printed out 50 copies, printed out envelopes and donated the stamps to send them for the group. All someone would have to do is sign the letter, put it in the envelope and mail it.  After that, the board of directors of the support group asked me and my wife to join their board. We gladly accepted.

We went to two of our first national conferences in 1995, what an eye-opener for both of us. there were so many sessions that both of us wanted to attend but couldn’t make it to all of them because some were at the same time, so my wife said,” how about we split up and report back to each other at the end of the day.” It was fantastic. A few years later UOA decided it was going to dissolve. We were devastated.

During the holiday season Stanley Cooper enjoys playing Santa Claus in the Philadelphia area.

We thought we were going to our last conference in Anaheim, California when it was announced that a new organization was forming. That was a huge relief to me and my family to know that there would be a national organization with the same values as the former organization to fulfill the emotional needs and be able to help any future family members or friends that someday may find out that they need to have an ostomy.

UOAA has continued the tradition and I was honored to volunteer when it came to Philadelphia in 2019. This year UOAA is hosting its 9th National Conference August 14-16, 2025 in Orlando, Florida.

Today UOAA also has an outstanding website here with ostomy.org that patients and medical professionals can go to and print out information on ostomy management and more. This is a huge help to new ostomy patients and ostomates who have had their ostomies for a while and are having problems can solve it on their own or postpone their need until they can get to see a doctor or WOC Nurse.

UOAA also has a Network of Affiliated Support Groups around the country where patients can go to a meeting and talk to other ostomates about having an ostomy, get answers to their questions such as will I be able to return to work? What type of clothing will I be able to wear? Will I be able to have relations with my husband, wife, boyfriend, girlfriend or significant other? Just some of the questions that have come out and there are hundreds more. Local Support Groups are vital to all ostomy patients and can be found on UOAA’s website with their support group finder.

Ostomies are lifesavers and I’ve been active in my retirement as a bakery worker and have gotten to serve as a Santa Claus in my community around Philadelphia.

We continue to support Ostomy Awareness Day each year and also any advocacy actions we can take on a state or local level. We’re all lucky UOAA is here for our community. Happy 20th Anniversary!

If you’d like to share a story about how UOAA has helped you or others in the past 20 years with ostomy advocacy, support, educational resources, events or more- email us at info@ostomy.org

BELIEVE in the Unseen Magic of All the Holidays and UOAA Advocacy

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“To believe in the things you can see and touch is no belief at all. But to believe in the unseen is a triumph and a blessing.” – Abraham Lincoln

By Jeanine Gleba, UOAA Advocacy Manager

UOAA’s Advocacy Committee and grassroots advocates were busy in 2024. We do all sorts of advocacy work throughout the year for the ostomy and continent diversion communities. A lot of our advocacy work is unseen, but you should know it is there.

For example behind the scenes we supported several efforts with other coalitions and like-minded patient organizations by signing onto ten different letters that were sent to Congress many with positive results and we had several open action alerts on our advocacy platform supporting Federal legislation. We also continue to advocate with the Access and Care Coalition in our efforts with the Medical Directors from the Centers of Medicare and Medicaid Services (CMS) to make improvements to the ostomy policies and processes in particular for those beneficiaries who medically need greater quantities of products than what is allowable under the current policy.  We won’t stop until this is resolved.  Another example has been challenges with billing codes that were approved by CMS a couple of years ago for irrigation sleeves, but Medicare beneficiaries have been unable to get the quantities they need. Using the misleading CMS quantity chart, suppliers are interpreting the quantity of “1” as 1, each.  However, the 1 actually represents a 1 month supply.  For reusable sleeves this equates to 4 sleeves per month and for disposable sleeves it is the quantity that the beneficiary needs. UOAA worked with the CMS billing contractor Noridian to help clarify this to ensure irrigators obtain the supplies they need.  Together we wrote this announcement that was sent to the supplier community for many weeks in 2024 and it was included in Noridian’s weekly Monday educational series.  

Speaking of holiday wishes, have you ever wished there was an outpatient ostomy clinic near you but didn’t know where to look? In 2024 UOAA’s Advocacy Committee unveiled a new “Outpatient Ostomy Services Locator” with close to 700 listings. 

“This directory, a resource that will enhance an ostomate’s recovery and get them back to their life, is just what the doctor ordered,” -Guy Orangio, MD, FACS, FASCRS

If you still can’t find a place for ostomy care and want to do something good for the ostomy community in your area, consider working with a local Affiliated Support Group leader or local hospital and/or ostomy nurse to open one – learn how to with UOAA’s new course Roadmap to Establishing Outpatient Ostomy Services which was released in 2024…and better still we have partnered with AppleTree CEU and now offer free Continuing Education credit.

Internally we revamped the advocacy priority webpage on ostomy.org to make it easier for you to know what our primary issues are and where we stand. View it here.

Did you see our new advocacy resources created in 2024? One of the newer advocacy campaigns is advocating to stop the practice of non-medical switching of ostomy supplies. You can learn more and see the resources we created on this new webpage. This year for Ostomy Awareness Day we created a new toolkit on how to obtain a Governor proclamation. As a result, thanks to our grassroots advocates half of the United States obtained proclamations!

On top of that we continue to make strides in the efforts to improve coverage and access to ostomy supplies in state Medicaid plans. Throughout 2024 we shared when Idaho, Maryland and New York made such improvements. 

We’ve also seen our advocacy work influence others and in 2024 our Ostomy and Continent Diversion Patient Bill of Rights were the model for the Intermittent Catheterisation Clinical Practice Principles. They were also used in soon-to-be-published research to improve patient outcomes and a colorectal surgeon fellow is now ensuring these best practices are being provided to ostomy patients in a North Carolina VA hospital. Slowly but surely, we are making a difference!

Lastly, our advocacy team contributed 10 blogs to ostomy.org to educate ostomates, keep people informed and inspire others.

And for those looking for a peek into the future:

As part of UOAA’s ongoing efforts to advocate for more ostomy nurses and increase ostomy education with medical professionals, in early 2024 we proposed a collaborative effort between UOAA and the Wound Ostomy Continence Nurses Society®. Together we designed a fun and exciting campaign entitled “Back to Your Nursing Roots” to encourage nurses with an ostomy certification to return to their nursing roots and plant ostomy seeds with new nursing students! We are currently in the pilot test phase with 12 certified ostomy nurses. The campaign will “bloom” in March 2025! 

Believe in us. Most importantly, when you believe in yourself magic can happen.

Christmas with an ostomy, all wrapped up

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By Convatec

We want to help everyone in our ostomy community have a wonderful holiday.

So, we’ve put together this guide to share our top tips. In our 12 ways of Christmas, you’ll find advice about everything from stocking up on supplies to eating and drinking in moderation. If you have a child with an ostomy, you’ll find tips on how to prepare for Christmas day. You’ll also find our Accessories Wish List, featuring our most popular accessories.

12 Ways of Christmas

The countdown to the big day has begun. To help you prepare, we’ve put together our 12 ways of Christmas. Share your tips on our social media channels using the hashtag #OstomyHoliday

1. Stocking up

Now’s the time to order more ostomy products if you haven’t already done so.

2. Get wrapping and packing

If you plan to travel, make a checklist of everything you need to pack or better still, pack an overnight bag now.

3. Eat, drink and be moderate

Avoid the risk of bloating or even a blockage by enjoying your favorite foods in moderation.

4. It’s all about the bubbles

Remember champagne, sodas and other carbonated beverages can cause ballooning and indigestion.

Check out our top ostomy nutrition tips here

5. Add Accessories to your wish list

The holiday break is a great time to give ostomy accessories a try. If you’ve got an ileostomy, give Diamonds™ Gelling Sachets a try – just pop one in your pouch to thicken your output and reduce gas.

6. Beware of what’s hidden in the dessert

If you’re one of the few who enjoy fruitcake, be aware of the ingredients and which might cause irritation.

7. Marshmallows aren’t just for S’mores

Many people with an ileostomy find that marshmallows are a great way to quickly thicken output.

8. Enjoy it

Sometimes the holidays can be stressful, even without an ostomy! Being knowledgeable and prepared can ensure you have a great time.

9. Dreaming of holiday food?

From a vegetable overload to rich, spicy foods, the holiday menu is packed full of potentially gas-inducing foods. Many people find they can enjoy these foods in moderation. And remember, if you’re at someone else’s house, it’s not rude to refuse.

10. Don’t expect the Santa Express…

If you’re traveling by land, air or sea, there’s likely to be a limited service. So, it’s a good idea to keep a supply of pouches and supplies within easy reach, just in case.

Check out our top travel tips for ostomates here

11. Stay hydrated

It’s tempting to hope that all that soda and eggnog is keeping you hydrated, but in reality, the opposite is more likely to be true. Alcohol is a diuretic, so if you decide to indulge a little, make sure to also drink plenty of water.

12. Take it easy the day after

Whatever day you celebrate on, it can be hugely fun, but also tiring. So be sure to plan to rest the day after.

Let’s make it all about stockings, not pouches: holiday tips for children with an ostomy

We all want our kids to wake up on Christmas morning (not too early!) thinking about their stockings, not their ostomy pouches. Best of all, there are things we can do as parents to help.

Plan ahead

You’ve already got so many things to think about, so it’s a good idea to make a checklist. Have you got enough supplies? If you’re going away, have you packed a bag?

Eat ahead

It can be a good idea to give your child bland food a day or so before a big holiday feast, to compensate for any overload the day of.

Sleep easy on Christmas Eve

You’re likely to already have an established bedtime routine. If so, try making it a bit earlier so you and your child are not rushed. Remember, to minimize the risk of leakages, avoid eating too close to bedtime and make sure the pouch is completely empty.

Wrap the mattress in a plastic sheet

If you’re not already doing so, get wrapping! A plastic sheet is easy to clean, avoiding any unnecessary upset.

Editor’s note: This blog is from one of our digital sponsors, Convatec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

The Impact of Advocacy: Healing Yourself and Uplifting Others

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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

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Fall Into Ostomy Awareness

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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

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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.

A Milestone for Ostomy Awareness

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 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!

 

 

Where Should I Purchase my Ostomy Products?

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Quick Reference Guide for Ordering Supplies and Insurance Reimbursement

• Ostomy supplies are special products and may not be available at your local drugstore.
• Contact your insurance provider to understand what your insurance plan covers and pays for ostomy supplies, and where you can purchase and order supplies (usually through a supplier or retailer).
• Connect with a trusted retail supplier for help understanding your insurance allowables. With your permission, they can even contact your insurance on your behalf.
• Do you need help finding a supplier for your ostomy products? Call the me+ team to learn more about your options (1-800-422-8811).

Still not sure which ostomy products to buy?

With me+™, you never have to figure it out alone.

Navigating and maximizing your health insurance, finding a retailer, and feeling confident in your ostomy supply purchases may feel overwhelming. The me+ support team is available so that you don’t have to figure it out alone.

You have the right to choose the Retail Supplier that best meets YOUR needs.

Convatec works with a group of Preferred Retail Suppliers to provide you with excellent customer service and dependable supply delivery. Our Preferred Retail Suppliers will:

  • Help you manage product orders in line with your insurance
  • Facilitate your insurance billing process to ensure you get the proper reimbursement for Medicare, Medicaid or private insurance
  • Help you select the right products to suit your personal needs
  • Ship your products straight to your home in discreet packaging
  • Send you timely reorder reminders
  • Protect your privacy in accordance with U.S. HIPAA guidelines

To learn more about Preferred Retail Suppliers that work with your insurance, contact our me+ support team at 1-800-422-8811, cic@convatec.com or fill out this form.

My Ostomy Journey App

Fit is so important, especially when it comes to your body and the ostomy products you’re using.

We know that there is no one-size-fits-all product that works for everybody or every stoma. Download the My Ostomy Journey app to discover and sample products to fit your body by answering just a few simple questions. It’s free to download and works on either a phone or tablet. Download now to get started today!

The reimbursement information provided by Convatec is intended to provide general information relevant to coding and reimbursement of Convatec’s products only. Coverage and payment policies for the same insurer can vary from one region to another and may change from time to time because of ongoing changes in government and insurance industry rules and regulations. Therefore, please confirm HCPCS Codes with your local DME-MAC, private insurer, or Medicaid agency before processing claims. Convatec does not guarantee coverage or payment of its products listed herein.

Editor’s note: This blog is from one of our digital sponsors, Convatec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

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.

Do you speak stoma?

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A New Guide aims to help you find the right words to talk about your ostomy

By Joga Ivatury, M.D., MHA

The Speaking Stoma Guide is the first health communication guide for people with ostomies. This work was coproduced through collaboration with ostomates worldwide, UOAA, clinical experts, and health communication experts. This guide is freely available here on UOAA’s website, encompassing 11 communication topics areas including managing pouch leaks, communicating with friends and family, and intimacy.

This work has been inspired by our experience working with ostomates. We recognize that talking about your ostomy will not always be easy. We created the Speaking Stoma Guide to help. We hope this guide gives you an idea of things you could say if you are ever in similar situations and ways to manage challenging social situations that may arise. Each section has a big topic and has different situations that you may experience. In the next section, we will provide a snapshot of situations inspired by real people with ostomies.

Leaks
In this section, we have suggestions for what you might say to help manage the situation based on how much you want to disclose about having an ostomy. These phrases were produced directly from things ostomates told us. For people who did not want to disclose anything about having an ostomy (low disclosure), a person may say, “Can you show me how to get to the bathroom?” For high disclosure, a person may say, “Can you show me how to get to the restroom? My ostomy pouch has leaked and I need to clean up. Would you be able to find me an extra set of clothes? I really appreciate it!” Each section has several suggestions like this.

Talking About Food
With an ostomy, some people have limitations on the food that they can eat. Some ostomates expressed embarrassment when they couldn’t eat the same food everyone else is eating. It’s hard to say “no” whenever someone offers you food. One participant noted that he once told a host on behalf of his wife: “Please don’t take offense. She doesn’t eat these things. It’s not your cooking.” For higher disclosure, a person may say “Thank you so much for inviting me. After my surgery I’m still figuring out the foods that make me feel best, so I ate before I came. Everything looks delicious!” In general, there are many people with and without ostomies that have dietary restrictions.

Public Restrooms
What do you do when you need to use a public restroom to care for your ostomy and there is a long line! For low disclosure, you may consider saying: “Excuse me, I have an emergency and need to get to a restroom right now.” This does not reveal anything to strangers except the urgent need. For higher disclosure, you may reveal the presence of your ostomy and the rapid need for its care. People in line can be helpful too. One of our participants recalls how a stranger helped her get to the front of the line during a pouch leak.

Talking to Friends and Family
Time with friends and family are vital to everyone. How do you address having an ostomy with them? Some of our participants suggested having a “code name” for the ostomy that they can use with their family and friends to talk it in public. Unfortunately, some people have disparaging comments or jokes about ostomies once they know about it. Some ostomates use humor back to deflect the situation. It is also ok to say: “I am not really comfortable joking about my ostomy like that, but I am glad you will be willing to help if I need it. I really appreciate it.”

Noises
Noises happen! People with ostomies have no control of when they happen. In the beginning, our participants noted that they felt awkward about the noises their ostomies made. It helped people to remember that no one knows that the noises came from the ostomy. It is ok to say nothing (low disclosure). It is also ok to say: “Excuse me, I have an ostomy pouch and sometimes it makes noises” (medium disclosure).

Sex and Intimacy
Some people are not sure when or how to tell a romantic partner about their ostomy. There is no right or wrong time. Some people may choose to tell someone immediately, while other people might wait to tell the person until they know the person better. Your comfort is what is most important. We have suggestions and real-life testimonies in the guide related to speaking about sex and intimacy while having an ostomy.

Talking to Clinicians
We also go through ways to manage different levels of challenging social situations or what we term as “difficulty.” For example, you are in a clinical visit with a new physician who is not familiar with ostomies. Our participants universally encountered this situation. They noted that they often are the most knowledgeable person about ostomies in a clinical visit. In the guide we provide some easy to remember suggestions about how to manage this situation and others.

What’s Next?
We are scientists and this work does not end here. We are actively working to obtain funding to test this guide to see if it makes a difference for people with ostomies. We have also translated the guide into Spanish and are pilot testing it with people who prefer to speak in Spanish. Our experiences with major grant organizations, however, has been underwhelming to say the least. Some reviewers talk about “osteotomies” (surgically created bone holes) instead of ostomies demonstrating their complete lack of basic understanding. Other reviewers assumed that existing information already contained a wealth of communication-related information for ostomates. Despite these, we are undeterred and will keep pushing forward for funding. We would appreciate any support for this work from anyone including the ostomy community, ostomy pouch manufacturers, and local/state health agencies to keep the momentum going! We would also appreciate your feedback on the Speaking Stoma Guide. Please feel free to email me at jivatury@austin.utexas.edu.

Joga Ivatury, M.D., MHA, is an associate professor of surgery Dell Medical School and the inaugural chief of colon and rectal surgery at UT Health Austin. The Speaking Stoma Project was funded through the Communication for Health, Empathy, and Resilience Grant Program and created in partnership with Dell Medical School and the Center for Health Communication at The University of Texas at Austin.

Sexual well-being and intimacy after ostomy surgery

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After ostomy surgery, it’s natural to feel sensitive about how your body has changed and be concerned about how it might affect intimacy and your sex life in the future.

Wherever you are in your journey, your sexual well-being is an important part of who you are.

  • Sexual well-being is an important part of everyone’s life, regardless of whether you are in a committed relationship, enjoying or thinking about dating, not sexually active, or unpartnered.1 
  • It covers many areas including body image and self-esteem, sexual function, reproductive health, emotional and physical satisfaction, and can impact both your physical and mental well-being. 1, 2
  • Pleasurable, fulfilling and fun sexual and intimate experiences are not out of bounds because you’ve had ostomy surgery. And no matter what your relationship status, age, gender or sexuality, starting the conversation about sex is just as important as the discussions around diet, exercise, skin issues and generally living with your ostomy.

Here are some topics you can explore in more detail in A Guide to Intimacy after Ostomy Surgery:

  • If you’re not ready, don’t rush. For some, intimacy will be one of the most important aspects of life they want to resume post-surgery, and for others, it might be the last thing on their minds.
  • When you are ready….Communication is the key when it comes to intimacy. Make time to talk to your partner.
  • Enjoying intimacy with an ostomy is anything but boring! Refer to the Guide for tips to increase your, and your partner’s, enjoyment.
  • Sexual orientation: Whatever your gender identity and sexual orientation, there are so many different ways of expressing and enjoying intimate moments including holding hands, hugging, kissing, cuddling and lots more.
  • Common issues that can affect everyone. The most common issues reported to us from people following ostomy surgery are feeling they must resume intimate relationships straightaway, and a fear of disappointing their partner.1 Two very common conditions that can affect sexual intimacy – vaginal dryness and erectile dysfunction – can be experienced by men and women at all stages of life, and whether they have an ostomy or not.
  • Pregnancy with an ostomy: Many women with an ostomy worry that pregnancy will be an issue after surgery, but in the vast majority of cases, it shouldn’t be. Most women are able to enjoy a very typical experience.

For more information, download A Guide to Intimacy after Ostomy Surgery

  1. References: 1. A Cross-National Study of Subjective Sexual Well-Being Among Older Women and Men: Findings From the Global Study of Sexual Attitudes and Behaviors Publication Title: Springer. Publication Date: 4/2006 . Author: Laumann, Edward; Paik, Anthony; Glasser, Dale; Kang, Jeong-Han; Wang, Tianfu; Levinson, Bernard; Moreira, Edson; Nicolosi, Alfredo; Gingell, Clive. 2. What is sexual well-being and why does it matter for public health? Kirstin R Mitchell, Ruth Lewis, Lucia F O’Sullivan, J Dennis Fortenberry. Lancet Public Health 2021; 6: e608–13. Published Online. June 21, 2021. https://doi.org/10.1016/S2468-2667(21)00099-2.

Editor’s note: This blog is from one of our digital sponsors, Convatec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Dressing to Feel Good

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By Lynn Wolfson

It is amazing what a boost one can get from dressing to feel and look good, especially those of us with ostomies. I know that when my hair is cut into an easy style that I can maintain, my nails are done and my clothes fit, I feel beautiful. When I feel beautiful, I am happy and share it with the world.

As an ostomy support group leader, I often hear from new ostomates struggling with what to wear after surgery. Many people may have their own style and should explore options to keep wearing the clothing they love. Too many others seem to lose confidence and motivation to dress in the more presentable ways they once did. Overall, I stress to dress so that you feel confident, comfortable, and good about yourself.

So, let us start with the pants. Depending on where the ostomy is located, this will determine whether one would be comfortable with zipper and button pants such as jeans. For me, I find that too restrictive, especially since I have two ostomies. Instead, I prefer either maternity pants, so I have belly room and my legs are not baggy or high elastic-waisted pants. I buy a variety of solid colors of the pants that I find most comfortable.

Unfortunately, men do not have the same choices as women. They should find a brand of pants that are comfortable for them and get them in an array of colors. Stretchable waists can be found on various pants and shorts designs, so don’t feel like you have to resort to athletic wear if you don’t want to.

The tops for women are fun to shop.  I usually get a loose shirt or blouse that goes over the pants. I get multiple tops for each pair of pants so I can mix and match.

Men may still have to tuck their shirts in for business. However casually, they can wear a shirt outside their pants or shorts.

It helps to be beautiful on the outside, especially when I am not physically feeling great.

Since I live in Florida, I only wear pants when it is chilly or when I travel to colder climates.  Personally, I prefer wearing dresses that do not have a waist.  I find them very comfortable and cooler in our hot climate. However, these dresses are not appropriate for business. I do have more tailored dresses without a waistline to wear for business occasions. I generally prefer wearing dresses just below the knee as one of my ostomy bags hangs low.

Shoes should be comfortable. Wear sneakers whenever possible if that’s what you want to do. In Florida, I wear sandals with rubber soles. Up north, boots are a necessity.

Lastly, I get my hair colored and shaped once every six weeks to keep it looking fresh and easy for me to maintain. I also get my nails done every three weeks.

It helps to be beautiful on the outside, especially when I am not physically feeling great. It helps me to get myself going and not have that get back into bed feeling. It is all a matter of attitude!  When I dress for success, I feel good about myself and am successful in getting things done.

Caring for an Ostomate with Memory Loss

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By Sarah Biggart (Convatec me+™)

Frequently I speak to callers about the challenges of caring for an ostomate with memory loss. Often time, people who were previously self-sufficient, independent ostomates become pre-occupied with their pouch; sometimes even pulling on it, which could cause numerous issues1,2.

This could be in the future for some of us, and a reality some caregivers are facing now as they care for and support loved ones.

If you are assisting a loved one, and you see them tugging, pulling, scratching or playing with their appliance, the first thing you should consider is that there may be a reason for this behavior. Their peristomal skin may be itching or burning, or they might be experiencing pain or discomfort around the stoma3. For someone who may have trouble communicating, this could be their way of letting you know something is wrong.

If this is a new behavior, contact your local ostomy nurse or healthcare provider. It’s important to rule out any medical issues they may be experiencing.

If the issue is determined to be purely behavioral, we have some suggested tips and tricks that may help as you care for and support your loved one.

Pouch Change Tips1,2,3:

  • Create a safe, relaxed environment. Take your cues from your loved one considering where they are the most comfortable. Maybe instead of standing in the bathroom, try laying down on the bed with soothing music or a favorite show playing in the background.
  • If evenings can be tough, a morning pouch change before eating breakfast may make more sense for you.
  • Keep ostomy supplies organized and clearly labeled for people who may be able to handle pouch changes independently or for rotating caregivers.
  • Use a calendar or the My Ostomy Journey App to track pouch changes. Do not wait until there is a leak to change the pouch. A leaking pouch may contribute to skin breakdown issues.
  • It may be necessary to store pastes, powders and sprays securely, as patients may attempt to tamper with or ingest these items.
  • Try ostomy accessories designed to simplify pouch changes.

Daily Living Tips1,2,3:

  • Many people with memory loss find comfort in routine. Find a rhythm to ostomy related tasks, such as emptying the pouch, and use the same verbiage each time to bring familiarity. Coordinate with the entire care team to ensure everyone is aligned with using similar language and prompts.
  • Staying occupied may help with keeping hands away from the pouching system. Things like puzzles, sorting items and folding something, may be just the thing to help.
  • Try an Ostomy wrap. Employing the “Out of Sight, Out of Mind” principal, a wrap helps to keep the pouch concealed and supported. A good ostomy wrap is made from a soft and stretchy wicking fabric and helps to keep sweat and moisture away from the skin and the wearer cool and comfortable.

Feeling isolated while providing care for loved ones is a common challenge, we encourage utilizing groups for ostomy support.

And remember that caregivers need care too. You may find comfort in your local Ostomy Support group Find one near you on the UOAA support group finder: https://www.ostomy.org/support-group-finder/.

 

Ruth and her family were confused and stressed when they had to take on the care of their 99-year- old mother’s ostomy.

“My mother has had a colostomy for nearly 60 years. She is now 99 years old with dementia, but had been independently keeping up with her stoma and pouch until just a few years ago. When family members started taking on the task of assisting her, we had to scramble to get up-to-speed since we never paid attention to the details of changing her “appliance” or emptying and re-closing the pouch.”

Ruth connected with me+™ to learn more about how to use ostomy products and accessories, and received follow up product samples and ongoing support.

“Erica was compassionate, truly listened to the problems we were encountering with my mother’s situation, and suggested products that addressed each of those challenges. The bottom line is Erica made me feel supported in my mother’s care, and that she cared that our family wanted my mother’s quality of life upheld when other healthcare providers wrote her off due to her age and mental condition. Erica contributed to us honoring my mother’s wonderfully rich and productive life at a time when that’s not evident to a stranger’s eye. We are so grateful for the support we’ve received through Convatec’s me+ Clinical Support Nurse Team.”

 

If you have questions about product sampling or nurse support available through the me+™ program, please contact us at 1-800-422-2211 or cic@convatec.com.  We look forward to helping you soon.

Editor’s note: This blog is from one of our digital sponsors, Convatec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

References:

  1. DementiaUK, Caring for a person with a Stoma and Dementia. https://www.dementiauk.org/information-and-support/health-advice/caring-for-a-person-with-a-stoma-and-dementia/. Accessed November 13th, 2023.
  2. United Ostomy Associations of America, Inc, Dementia Stoma Care. https://www.ostomy.org/dementia-stoma-care/. Accessed November 13th, 2023.
  3. McGrogan M. How holistic assessment and appropriate product selection will enhance quality of life for ostomates with cognitive impairment. WCET® Journal 2021;41(1):33-35

What Keeps You Up at Night?

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Sleep is vital for health and healing. Hormones released at night are responsible for cell growth and repair. We also need quality sleep for healthy cognitive functioning and so we can complete everyday tasks. A lack of sleep can lead to confusion, delayed healing, immunosuppression, elevated blood pressure, decreased pain tolerance, and many other negative effects.

If you have an ostomy, your quality of life may be impacted by the condition of the skin around your stoma (i.e., your peristomal skin), and issues like pouch ballooning and leakage. One area often not given much attention is how having an ostomy affects your sleep. Based on anecdotal evidence (i.e., clinician experiences and patient stories), we know that living with an ostomy can negatively impact sleep. But to what extent?

Ostomy Sleep Survey

To answer this question, Hollister Incorporated conducted an Ostomy Sleep Survey1. The results revealed some interesting insights on how having a stoma impacts sleep and on how ostomates address their sleep issues.

To conduct this research, we collaborated with product distributors and patient organizations to provide nearly 6,000 people with a detailed 15-question online survey. Participants varied in type of ostomy and length of time living with an ostomy.

The survey included both those with healthy and unhealthy/compromised peristomal skin. Nearly 60% of participants were in the unhealthy category, although most of them (40%) reported only reddened skin and no other symptoms. (n=5,690)

The impact of sleeping with an ostomy

Many people experience interrupted sleep for various reasons, including insomnia, sleep apnea, stress, and environmental factors. However, those with an ostomy have an added layer of potential sleep disruption.

The survey results provided strong evidence of an ostomy’s impact on sleep:

  • Nearly 50% of respondents said their pouching system disrupted their sleep in the past 30 days (n=5,648)
  • 75% experienced pouch-related sleep disruptions at least once a week (n=2,476)
  • 64% of participants — nearly 2 in 3 — cited pouch ballooning as a sleep disrupter (n=2,676)
  • 50% said that sleep disruption was due to pouch leakage or worry that the pouch would fail (n=2,676)
  • Nearly 20% said their sleep was disrupted by itchy skin with no visible sign of irritation (n=2,676)

To read more about the data collected and how to address sleep disruptions, keep reading here.

  1. Hollister Data on File, ref-02989, 2022.

This article was contributed by Hollister Incorporated. Hollister Incorporated is a proud sponsor of United Ostomy Associations of America and dedicated to delivering the highest standard of quality in ostomy care products. For more helpful resources, visit http://www.hollister.com/ostomylearningcenter.

Please make sure to consult with your healthcare professional for further guidance and instruction. The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. Hollister is a trademark of Hollister Incorporated.

AN OSTOMY ARMY STORY

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By Tony Plonner

Editor’s Note: UOAA is proud to recognize Veterans and supports all those now living with an ostomy or continent diversion. 

As a 20-year-old, way back in 1972, entering Army basic training was a daunting experience, the “fear of the unknown” had my mind reeling of what could happen. My approach was to take the challenge one day at a time, one hour at a time, or if necessary, one minute at a time.

We adopted many phrases to get us through the many challenges of this new environment: “Can Do!”, “When the going gets tough the tough get going” and when all else failed, “Yes Drill Sergeant!’ and we’d jump into the challenge at hand. This experience taught us we could surmount obstacles we’d never dreamed of.  Unknowingly, our training prepared us for many of life’s challenges both in and out of the military. For me, progressions to Military Police School and Officer Candidate School strengthened my confidence and allowed me to take on challenges in both the military and civilian worlds.

One basic premise I learned was to never quit.  I learned the quitter never knows how close they were to success. Whatever the challenge, you keep moving and keep fighting.

A little over thirty years ago, I was diagnosed with prostate cancer.  Surgery and radiation followed.  I kept a positive outlook and survived the experience.  Unfortunately, a couple of years ago, I was diagnosed with bladder cancer.  I was told there was a chance the radiation many years before may have led to this cancer.  As it was muscle invasive, and with a history of radiation, all the doctors involved agreed the bladder would have to go.  I had faith in my team and after a round of chemotherapy, I had urostomy surgery at the University of Miami Medical Center on March 14, 2022.

My best advice for those about to undergo or have recently had urostomy surgery for bladder cancer is to keep the “Can Do” attitude and continue with your life’s goals. You’ll be amazed how far you’ll go.

Having been told the result of the surgery would result in an ostomy, I researched as much as possible to learn about the side effects and the changes to my lifestyle I’d encounter. A pleasant result of this research was finding the tremendous support network available.  I learned about the Bladder Cancer Advocacy Network (BCAN) and through my old army buddy, Justin Blum, United Ostomy Associations of America (UOAA).

Tony Plonner, pictured riding the Florida Keys Scenic Highway has continued an active lifestyle after urostomy surgery for bladder cancer.

Reading case stories, with a bit of skepticism I’ll admit, I learned of the many people who have not only survived but thrived through this experience.  Along with my experience of tackling the unknown in the Army, and the great support of family and friends, these stories only bolstered my faith that we’d lick this cancer and continue with life.

My doctors regaled me with stories of ostomy patients maintaining their lifestyles, skydiving, running, golfing and barely missing a beat after surgery.  Combined with the experiences of ostomates I’d read about, was confident I’d go through the surgery and, despite new limitations expected on my lifestyle, I’d take the hill and keep on moving.

Looking back over the last year and a half I am astonished at how smooth, if that is the right word, the transition has been.  Beginning with the support of the team at the surgery center, who trained me in the care of my ostomy, I followed orders like a good soldier, paid attention to their instruction and thankfully have made the transition to ostomate.

My biggest concerns, changes to my lifestyle, were pretty much unfounded.  I am an avid golfer, road bicyclist, and generally an active person.  I was concerned about how my ostomy bag would affect these pursuits.  The answer is hardly. I wondered how I’d be able to go on bike rides of 15 or 20 miles in tight bike shorts and was pleasantly surprised to find it pretty comfortable. Also, it is easy to tell when I need to pull over and go to the bathroom.  Spandex bike shorts don’t provide much wiggle room!

Golfing also has been unaffected by my ostomy. I was worried about the twisting during the golf swing and any stress it would put on my appliance.  It hasn’t been an issue.  Now, if I could only lower my handicap…

My best advice for those about to undergo or have recently had urostomy surgery for bladder cancer is to keep the “Can Do” attitude and continue with your life’s goals. You’ll be amazed how far you’ll go.