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.

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! 

 

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.

‘UOAA Has Been A Lifesaver for Me’ Says New Ostomate

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When first presented with having a “bag” I was terrified. I had a lot of questions…. How will I wear my clothes? Will I still be able to run or lift weights? Will I ever date again? How can I go to the beach? And so many more. I really was not familiar with this at all.

How UOAA Helps: Connie contacted UOAA before surgery earlier this year and is now on the path to health and happiness in life with an ostomy. Donate to help the next ostomate in need.

I did my fair share of googling, but there are so many conflicting pieces of information out there. I also joined some Facebook groups to find some support.  That proved to be very confusing and often quite discouraging. In February of 2023, a week before my surgery, I met with an ostomy nurse for the first time.  That is when it hit me.  She showed me a practice stoma, put my markings on, and had me look in a mirror with a bag.  I realized I needed more information in order to navigate this the best I can.

Finding UOAA

I came home and searched for ostomy support groups in my area and found one. I immediately connected with them, and they shared UOAA’s information with me. I then went on to their website ostomy.org to gain as much knowledge as possible. I went into surgery with a positive attitude because I knew my life would be so much better afterward.

The people I talked to at UOAA’s office were so helpful! They answered all my questions, and I had a lot!  They directed me to many resources like a New Patient Guide and sent me links to videos and other information which I still use. It is reassuring to know that I can reach out with questions and that they will be there for support.

UOAA has been a lifesaver for me. I was overwhelmed following my ostomy surgery. I am so excited that I am feeling better. I am so appreciative of the connections I have been able to make and the educational materials I have received by contacting UOAA.

On February 23, 2023, I had surgery for an end ileostomy, total colectomy, rectopexy, and hernia and bladder repair. After a lifetime of being a prisoner to my colon and GI tract, a ton of medications, and a ridiculous daily twelve-hour ritual that dictated my days, I finally was given hope to improve my quality of life. The day after surgery I already knew this was the right thing for me, and I somehow felt “free” of all the meds and issues I had before.

Helpful Free Resources

UOAA sent me a welcome packet in the mail with a ton of info about nutrition, living with an ostomy, exercise materials, you name it. The coolest thing was the card to use with TSA when I fly… that is going to be a lifesaver, I think! I had many questions about getting back to my normal activities, and I was sent links to Youtube and even Instagram of people that have ostomies and have resumed, or even surpassed, their pre-ostomy fitness routines.

My experience has definitely been better with my local ostomy group and with UOAA by my side.

A link to an occupational therapist was also helpful. I started following and connecting with many of these people, as I have found inspiration in them. I have since called UOAA several more times seeking answers to my questions, concerns, or even worries. Each time they have promptly responded and provided me with continued optimism as I begin this ostomy journey.

UOAA Helped Me Feel ‘Normal’ Again

I think that the biggest thing is that UOAA helped me to feel “normal” and that I am not alone in this.  Starting out with an ostomy is pretty scary, and there are a lot of unknowns. So much of what you read is negative from people that have had problems or are just very discouraged with their situations. UOAA shares the successes, the positives, and the education so that you can learn and grow each day knowing that you don’t have to give up anything at all.

For me, I plan to get back to my full fitness routine once I am fully recovered. I already feel healthier than I have for so many years.  But I know I still have a lot of learning to do… from appliances (I still can’t figure out the best ones for me), to the different types of foods to eat, to stoma care (I still always want to make sure everything is okay), to traveling, exercise, clothing, wraps, connecting with other people with ostomies, and maybe even dating again in my future. My experience has definitely been better with my local ostomy group and with UOAA by my side.

Grateful to Learn More at the National Conference this Summer

I’m also very thankful to have been awarded a CARES scholarship (FYI, current scholarships have been filled) to attend UOAA’s National Conference in Houston. This assistance will allow me to continue on my journey in a healthy and positive way.

As a single 57-year-old mom, I have three grown children (one still in graduate school), a new granddaughter, and two younger children I adopted, one with unique medical needs – it has not been easy. Last year’s hurricane, coupled with the astronomical surgery costs, have me struggling greatly on a teacher’s salary. I have worked really hard to provide for other people, and I’ve never really done for me.

This conference is something I feel is important for me as I want to be able to live my life to the fullest. I strive to be the best Nana, mom, and person I can be. I want to embrace my body, my life with an ostomy, and continually improve my quality of life.. It will allow me to move forward, make connections, gain much-needed knowledge, be an advocate for myself and others, and to stay “OSTOMISTIC!” 

One day I can even envision myself advocating for others in the ostomy world, being active in the ostomy community, and I would love to get to the point where I can even be an inspiration to others.

Connie, you are already inspiring to those of us at UOAA.

Please Donate to UOAA to put other people like Connie on a successful path.  Support quality of life resources, education and advocacy for people living with an ostomy or continent diversion. United Ostomy Associations of America inc. (UOAA) is a 501(c)(3) nonprofit organization and all donations are tax deductible. Thank you!

Shared by Connie Pollina of Naples, Florida

Young Ostomates to Gather in Houston for #UOAA2023

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Among the general public there is still a perception that people living with an “ostomy bag” or pouch are older seniors or at least middle-aged. Those searching on social media however will soon discover that younger people with an ostomy are not only  visible, but sharing and embracing “ostomy life” in a whole new way.

Allison Rosen and friends at the Waterwall Park close to the Royal Sonesta Houston Galleria, the site of the UOAA 2023 National Conference. 

Many young adults with an ostomy have never had the opportunity to meet another person they could truly relate to.

What if there was a place where online ostomy friends could meet in person, socialize, laugh, cry and just be together? Well, that place is UOAA’s National Conference August 10-12, 2023 in Houston, Texas.  

Attendees of all ages will get to experience a large ostomy product exhibit hall and sign-up to sample products and see a WOC nurse at the free stoma clinic. Former Miss Texas and current J-Poucher Magen Cherry will provide the keynote welcome. 

Ostomy experts will also speak and be on hand to answer surgery-specific questions for people with an ileostomy, colostomy, urostomy, j-pouch or continent diversion. Young adults, along with Caregivers, IBD Patients, LGBTQ+, and kids/parents will be offered even more specialized sessions and tracks.

Young Adult Track 

After its successful debut in Philadelphia, the Young Adult Track is back for this year’s conference! Designed for ostomates in an earlier stage of life, the track features topics like, dating and sexuality, body image, managing school/work, navigating parenthood, exercise, and staying active all while juggling ostomy care and other chronic health conditions. 

Sessions range from formal presentations and panel discussions to off-the-cuff conversations and opportunities to connect with fellow young ostomates. The Young Adult Track offers participants the opportunity to learn new things while forming friendships and bonds that extend well beyond the weekend of the conference.

”If you’re looking for peers in your age range who truly “get it,” look no further — we can’t wait to see you in Houston!” says co-organizer Molly Atwater-Pulisic (Molly Olly Ostomy). The young adult group typically meet informally after hours in the hotel lounge and go on city outings together as well.

You’ll want to stay at the Royal Sonesta Houston Galleria to not miss out and be close to all the action. A special UOAA group rate is available. 

The young adult track is awesome, because we make fast friends and are able to relax and talk openly and casually about personal, ostomy-related topics that are sometimes difficult to share with people in our usual daily lives. -Nate Hadlock

Local Houstonian and ostomy advocate Allison Rosen is helping to plan a Texas themed evening of line dancing, drinks and desserts. “I am looking forward to meeting virtual Ostomy friends in person for the first time! Meeting others who understand I know will be life changing!” Rosen says. 

Young Adult Track attendees will have a dedicated meeting room starting with a meet and greet on the morning of Thursday, August 10 ending with FAQs Saturday afternoon before the closing party. A special Friday night gathering just for the Young Adults is also being planned with track sponsor Hollister. 

If this all feels a bit overwhelming don’t worry you’ll be embraced with open arms. Unofficial social chair Alyssa Zeldenrust has made it her mission to greet and connect young ostomates since first attending the conference in 2011. In a testimonial video she shares why she keeps coming back. “All of us are on our second chance at life, so it’s extra special to all be together and it’s a very joyous atmosphere.”

She’ll also be speaking on Ostomy FAVE Things along with other conference veterans Chloe Moody and Nate Hadlock.

“I’ll be sharing tips, “tricks”, and experiences that have helped me through my medical journey. As many ostomates have done for me since my first conference in 2017, this year my goal is to help others feel welcome and have breakthroughs of their own,” Hadlock says.

Those active on social media may see some other familiar faces such as Kristen Furey, The Furey Fighter. “I’m excited to share my journey with Advocacy and what it has done for me in terms of growth and acceptance with an ostomy!” Furey says. “I am most looking forward to attending my first UOAA ostomy conference and being around so many other people who have similar health conditions and an ostomy! Knowing they have walked the same journey that I have and hearing from them firsthand their experiences with an ostomy!”

Speaking on Parenthood it will also be the first conference for Meghan Brown (@EMC_Brown)  “I am most looking forward to meeting longtime ostomy friends and experiencing my very first conference, as well as hearing some of my closest ostomy friends speak!”

“For my talk, I’m excited to share more about my experiences of pregnancy with an ostomy and what life looks like now with a very curious three year old and wild 20 month old. I’ll shed a little light into the funny but important conversations I’ve had with my three year old about my ostomy, and how we maintain an open dialogue around all things ostomy.”

Molly Atwater-Pulisic will be joined with Collin Jarvis in leading many of the other topic discussions. Check out the full conference schedule. Young Adults between the ages of 18-25 get the special price of $135.00 for all three days. 

Caregivers Track

Partners or caregivers of ostomates are also encouraged to attend UOAA’s National Conference this summer. Register and you’ll be welcomed for all the social events and food and drink opportunities and receive access to the informative Exhibit Hall.

Special sessions are also exclusive to caregivers on Friday August 11. 

The Caregivers Track that morning will feature a Caring for a Male Rap Session and a Caring for a Female Rap Session. 

An important session on Caregiver Stress – How to Cope will be available that morning a well. 

Pediatric Track

The youngest of ostomates and their parents/caregivers will also have a special track at the conference.. This day-long  program is held on Saturday and will be led by pediatric WOC Nurses and ostomy parents. 

Some session highlights include: 

Advice from an Ostomy Parent with Julie Hubbard

Dietary Considerations in GI/Ostomy Patient with Erika Kay, RDN, LD 9:15am to 10:30am Ask the Expert: Gastroenterology Care of the Pediatric IBD Patient with Dr. Allison Wyatt 

Ask the Expert: Surgical Management of the Pediatric IBD Patient with Dr. Rueben Rodriquez

Ostomy Complications and Pouching Techniques with WOC Nurse Maryanne Lewis

Ask the WOC Nurses with Barbara Richardson, Erika Guidry and Sharon Wallace

Exercise and Activities for Children with Ostomies with Tenille and Rebekka Smith

Children between the ages of 5-17 are just $25 and the one-day rate for parents is $125.00

Volunteers from around the country are working hard to create a life-changing experience for the young ostomate community. Register by May 31st to get the early bird discount. Please spread the word, invite a friend and discover your people this August in Houston. 

 

Understanding Stoma and Ostomy Basics

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There are two main types of stomas, and they both have certain “ideal” characteristics in common. Do you know what they are?

Wound care nurses know that it’s not uncommon to hear the terms ostomy and stoma used interchangeably, even though they have different meanings.

What is a stoma?

Let’s start with the basics:

  • The stoma is the mouth-like, visible part of an ostomy.
  • A fecal or urinary stoma is composed of mucous membrane or the lining of the intestine that’s exposed to the surface.
  • Following ostomy surgery, effluent (output) — such as fecal matter, urine, or mucous — will pass through the opening of the stoma, called the lumen.
  • The patient will not have voluntary control of the effluent expelled by the stoma.

Types of stomas

There two major categories of stomas: the end and the loop.

End stoma

An end stoma is created when the surgeon brings one end of the GI tract through the abdominal wall, then folds it over. The surgeon then removes the other end or sews it shut.

In some cases, the surgeon will create end stomas from both ends of the GI tract, called a double-barrel stoma. In this case, you’ll see two distinct stomas: the proximal stoma discharges stool and the distal stoma discharges mucous. Sometimes an expanse of skin separates the two stomas, and sometimes they will share the same opening. This construction is most common for infants or very small children.

Loop stoma

To create this type of colostomy, the surgeon lifts a loop of the transverse colon through the abdomen. The colon is given a small split on the side facing out, and a rod is placed underneath for support. The rod may be removed after a few days when support is no longer needed. The proximal opening of the stoma drains stool from the intestine, while the distal opening of the stoma drains mucus. Loop stomas are usually created for temporary ostomies.

Characteristics of an ideal healthy stoma

Each stoma is unique, just as each patient’s physiology is unique. Different surgical techniques will result in stomas of different appearance. At the same time, the “ideal” stoma has some identifiable characteristics:

Moist

The inner surface of the stoma continually produces mucus to cleanse the stoma. Mucus production is a normal function of the intestines that serves as natural lubrication for food passing through the body. The mucus gives the healthy stoma a wet appearance.

Beefy red

Blood flow is essential to the health of the stoma. Normal stoma tissue is highly vascular and will appear deep pink to red. Pale pink is also normal in a urinary stoma. Stoma tissue may even bleed slightly when rubbed or irritated, which is normal. When a stoma turns pale, or dark, it means there’s a problem with the blood supply, so be sure to investigate.

Round

A round stoma is easiest to measure with circular rulers. It also works best with pre-cut skin barriers (the part of the ostomy appliance that affixes to the skin and attaches to pouch). An oval or irregularly shaped stoma may require cut-to-fit skin barriers.

The shape is affected by the type of ostomy and the individual’s body composition. The shape can also vary with the wave-like muscular contractions of the intestines, the peristaltic movement.

Budded/protruding

When a stoma has a rosebud shape (rather than flat or retracted), it protrudes into the pouching system. This allows the effluent to fall out into the pouch away from the body. The ideal protrusion is 2-3 cm with a lumen in the very center.

Strategically located

To easily accommodate the skin barrier, it’s ideal to have 2-3 inches of flat skin around the stoma. Avoid beltlines, bony prominences, skin folds, suture lines, or the umbilicus (belly button). Also, the patient will have more success managing a stoma located in an area that they can see and reach.

Stoma assessment

The stoma itself has no sensory nerve endings, which means there is no sensation for the patient. In other words, the patient may not feel pain or discomfort if the stoma becomes lacerated or injured. Therefore, your thorough clinical assessment of the stoma and the surrounding skin is essential to catching problems early.

Ostomy basics for healthcare clinicians: upcoming wound care conference session

As the third largest wound care conference in the nation, Wild on Wounds (WOW) is focused on advancing the healthcare workforce with impactful, innovative, hands-on wound care education built by and for clinicians.

This year, Joy Hooper, RN, BSN, CWOCN, OMS, WCC, AWCC, will present, “Ostomy: Basics and Beyond” which will provide a better level of understanding of colostomy, ileostomy, and urostomy surgery. The surgeries will be explained in a simple, relatable show-and-tell progression that builds on healthcare clinicians’ understanding GI tract anatomy. The presentation will include the concepts of peristomal skin protection from output and the different types of appliances available. The session will also include trouble shooting common peristomal skin common complications.

The session is intended for dieticians, nurses, and physical therapists and offers 4.00 contact hours. Learning objectives from the session include:

  • Identifying how to communicate basic ostomy care based on individual type of ostomy as it relates to a patient’s ostomy type
  • Selecting interventions to preserve peristomal skin integrity
  • Recognizing how to use ostomy products to customize fit thus promoting quality of life

WOW details

This year’s 17th annual WOW event is brought to you by the Wound Care Education Institute (WCEI) and Nurse.com, part of the parent company Relias’ family of brands. The conference will take place from September 13–16 in Hollywood, Florida. Conference attendees can choose from dozens of educational sessions and earn up to 25 contact hours for CE credits.

WOW offers innovative, interactive, and informative sessions, including simulation workshops, live product demonstrations, and a new pre-conference track with an entire day of legal sessions. Also new this year is a virtual poster hall featuring the latest in clinical research, clinical practice outcomes, evidence-based interventions, new technology, management of complex wounds, and more.

To learn more and register for Wild on Wounds, visit here.

-Natalie Vaughn, MBA, Senior Content Marketing Manager, Relias

Telling People About Your Ostomy

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It’s been said before, but it is worth repeating: who you tell about your ostomy and when you tell them is completely up to you. This is the first and foremost rule you should keep in mind when it comes to sharing about your ostomy. Most likely others won’t know you have an ostomy unless you bring it up.  If you are reading this before your surgery, you will need to think about what kind of support you are looking for. As you decide to let people in on your new situation, consider who can offer you the support and friendship you need during this time.

Place of Work

There is no right or wrong way when it comes to sharing about your ostomy at work. It might be that no one needs to know about it, it doesn’t affect your work and you are receiving enough support from friends and family and other people outside of work. Or, your situation might be that you need to take frequent breaks to empty your pouch and so explaining a little bit about your surgery will help your employer to understand what’s going on. Again, feel free to be as specific or general as you want. It might even be helpful to write out a small script so you can go into this conversation with added confidence. Decide how much you want to share, and how willing you are to answer questions.

Family and Close Friends

Hopefully, you aren’t trying to go through this life-changing experience alone. Family and/or friends should be the foundation of your support network. Having someone you trust at medical appointments with you can be helpful for your morale, but also to have another set of ears to remember details and information that you may have missed. When you decide to let other people close to you in on the reality of your situation, ask the person who was with you at those appointments to be there to support you. It’s amazing how much more confident we can feel having the energy of a loving and loyal person at our side.

Romantic Partners

If you are in a committed relationship prior to your surgery, then it’s likely they will be informed of your ostomy and the changes to your body. While it can be scary to let people in and tell them about your ostomy, it can be even scarier to be alone in the process. Going through this with a partner by your side can be so beneficial to your recovery process, and can also help to strengthen your relationship.

Dating after your ostomy can seem daunting at first, but as you heal and become more and more comfortable with your new routine, your confidence will grow.  Keep in mind that it’s completely up to you when to tell a new romantic partner about your ostomy. As with your workmates, you may want to take the time to figure out what you want to say before you say it. It’s okay to keep it short and basic and then decide if you want to take some time to answer questions.

Confidence

The more confident and comfortable you are with your ostomy, the more this will show when you speak about it. Be patient with yourself and allow yourself time to heal and get used to the changes and new routine that an ostomy brings. Try to focus on the positive things that having an ostomy surgery has done for you and your body. It may be helpful to speak with others who are in a similar situation.  Talk to someone who has gone before you and find out how they told people about their ostomy.

It’s up to you who you tell, when you tell them and how you do it.

Visit the Coloplast Care site for more information on sharing about your ostomy at work.

 

Information from Coloplast® Care is for educational purposes only. It is not intended to substitute for professional medical advice and should not be interpreted to contain treatment recommendations. You should rely on the healthcare professional who knows your individual history for personal medical advice and diagnosis.

Editor’s note: This blog is from one of our digital sponsors, Coloplast. 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.

Life as a Double Ostomate

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For people who have recently come to accept or are still struggling to manage one ostomy the news that they may need to have a second stoma and pouching system could be overwhelming. Please know you are not alone. Many people are able to thrive in life with two ostomies, or multiple diversions.

When UOAA hears from those with questions for a double ostomate we often refer them to ostomy community friend Jearlean Taylor.  Jearlean wanted to share some advice and invite all double ostomates to her talk and open discussion entitled “Life as a Double Ostomate” on August 12, 2023 as part of UOAA’s National Conference in Houston, Texas.

Sharing with the community of double ostomates is so refreshing and exciting. It is true “we are not alone”. We can live our life as a double ostomate with joy.

I am Jearlean from Baltimore, Maryland. I am a double ostomate, fashion model, author, motivational speaker, entrepreneur, and ostomy advocate.

My life has had some unexpected outcomes. I guess you can say “life” happened. At the tender age of 3 years old I developed a rare form of cancer (Rhabdomyosarcoma). Because of the tumors I had to undergo ostomy surgery, which left me with two permanent ostomies (colostomy & urostomy).

If you or a child come to find you need a second ostomy my advice is to ADAPT. I had to learn to adapt. As I got older it was two major things for me to adapt; body and mind. When we hear two ostomies we get scared, but when we accept what we can’t change it says we are survivors. I adapted to new ways of taking care of my body (ostomies) and keeping my mind positive. Those still adapting to having two ostomies reflect how far you have come and where you are now. Celebrate each moment.

A Common question or statement I get is “you had your ostomies that long. How did you adapt?” The moment I learned to deal with my medical circumstance when my mom explained that I was not different from anyone else. I am beautiful with my bags. I can be, do, and follow my passions and dreams. I can live a full and vibrant life. It happened just as she said. Because of what she instilled in me, I BELIEVED IT.

When we hear two ostomies we get scared, but when we accept what we can’t change it says we are survivors.

Sharing with the community of double ostomates is so refreshing and exciting. It is true “we are not alone”. We can live our life as a double ostomate with joy. We are more than our ostomies.

I also try to give encouraging tips for dressing with an ostomy for comfort and peace of mind. Remember.

  • We are beautiful from the inside out
  • Work with your body type and comfort
  • Look for clothing that YOU like ,and what is comfortable for your ostomies
  • Shopping for clothing; take a family or friend along for support
  • Try on multiple items of clothing, even the clothing in your closet
  • Consider ostomy accessories (ostomy wraps, stealth belt, hernia belt, fitted tops, high waist undergarments, etc..)

We have the ability to make a difference and change lives even through our struggles. You may have an ostomy, dealing with chronic illness, feeling down and inadequate at times, but remember you are more than you have become.  Our situations, challenges, and unforeseen circumstances does not have to dictate who we are or who we can become. My purpose is to inform everyone that “life” happens to us all; good, bad, and indifferent. I want to show people even through our struggles, pain, disease, and even having ostomy we have a purpose in life.

“DIFFERENT TO MAKE A DIFFERENCE“

 

You can find Jearlean online at jearleantaylor.com and across social media. Meet her and a whole community of double ostomates at UOAA’s 8th National Conference August 10-12, 2023, In Houston Texas. 

Calling all Ostomates, You’re Invited to H-Town

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By Robin Glover

Come one, come all to Houston, TX, for the 8th United Ostomy Associations of America (UOAA) National Conference!

From August 10-12, 2023, UOAA and the fourth largest city in the United States is opening its arms to welcome ostomates from all over the country for three full days of fun, learning, advocacy, and unity.

Houston is known as the Space City for its NASA connection but also more recently just H-Town for its culture and the “Big Heart” for its welcoming spirit of those affected by Hurricane Katrina.

Houston is an ultra-diverse city with something to offer everyone, from world-class dining to high-end shopping to down-to-earth BBQ joints, and believe it or not, ice skating!

The best part? You can find all of that within a very short distance from The Royal Sonesta Galleria Hotel where the conference is being held.

Leave your worries behind and imagine a learning vacation where you can be surrounded by new ostomy friends who have been in your shoes. The only thing you’ll need to do is have an open mind and have some fun.

The Luxurious Royal Sonesta Hotel

There are lots of places to go in the Uptown area but The Royal Sonesta Galleria itself offers enough that you never even need to leave its luxurious ambiance. It has four restaurants, a coffee shop, a fitness center, an accessible swimming pool, a hot tub, and, if you do want to head somewhere, a free shuttle service to points of interest within 3 miles (ADA transportation available upon request.) You can bring your pet too!

 

Royal Sonesta Houston Galleria
2222 West Loop South
Houston, TX 77027
Hotel Reservations: https://book.passkey.com/event/50354976/owner/5142/home
Room Block 2023 UOAA National Conference
Special UOAA Rate $143 plus taxes

What could be better than finishing a fun-filled day at the conference by hanging out with new friends and old acquaintances without having to go anywhere? Just gather around in the lobby area, sit together at a restaurant (enjoying a meal, a special drink, or just a glass of water), or hang out at the pool and talk the night away sharing stories and experiences with ostomates from all over the country.

You’ll want to stay through Saturday night and get some dancing boots to wrap up the event with music, desserts, and country line dancing lessons.

Click Here to get the UOAA Room Block Rate. As conference guests staying at the hotel, we’ll be the VIPs.

Explore Houston’s Famous Galleria Mall

A half-mile away, the 400-store Houston Galleria welcomes 30 million visitors a year and is home to Chanel, Dolce & Gabbana, Louboutin, and Tom Ford (and basically every other designer) boutiques, as well as an Apple Store, LEGO Store, Tesla showroom, a 2,000 square ft. children’s play area, and the TFTI | Interactive Selfie Museum (they charge admission).

There’s also an escape room, an awesome candy shop, jewelry stores, shoe stores, and a lot more. Plus, incredible local dining options from sushi, Indian food, French food, and steak to national favorites like Shake Shack and The Cheesecake Factory, along with tea shops, frozen yogurt, coffee shops, and juice shops.

Oh yeah, ice skating! The Galleria offers year-round, indoor ice skating (fee) for all ages and levels.

You could easily spend a couple of evenings after the conference sipping on some coffee, tea, juice, or your favorite hydration drink while roaming around The Galleria taking in the scenery, doing an escape room, gawking at the price of a designer belt, or possibly even some shopping.

Houston water wall and park near the Galleria Mall.

The Beautiful Gerald D. Hines Waterwall

If you’re not in the mood for the mall (or already went), you can take a quick evening stroll to Gerald D. Hines Waterwall Park. This iconic Houston architectural landmark is beautifully lit at night and provides peace and serenity in the form of a 50-foot-tall sheet of cascading water. It’s really quite mesmerizing and is surrounded by a 3-acre park featuring green space and nearly 200 live oak trees.

Other Things to Do During the Weekend

Experience Global Cuisine
Houston is one of the nation’s most diverse cities and offers an authentic cultural experience from places all over the world and fusions like Viet-Cajun. Depending on your dietary restrictions, you can try traditional food and drinks (including non-alcoholic) from Ethiopia, India, Sri Lanka, Nigeria, West Africa, Vietnam, China, Japan, Afghanistan, Portugal, Nepal, Brazil, Central America, and, of course Texas all within 5 miles of the hotel.

See the World Series Champions
The Houston Astros will be playing the Los Angeles Angels at Minute Maid Park on August 10, 11, 12 and 13. The stadium is 15 minutes from The Royal Sonesta Hotel. Even if you’re not an Astros fan, it’s still a great ballpark and a great experience.

Watch a Tony-Award Winning Musical
The Motown-inspired Ain’t Too Proud: The Life and Times of the Temptations will be making a stop on its off-Broadway tour in Houston during the weekend of the conference. There will be nightly shows at the Hobby Center for the Performing Arts. Ain’t Too Proud won a 2019 Tony Award for Best Choreography. The theater is also 15 minutes from the hotel. (Uber is your friend.)

Be at the Center of It All at The Royal Sonesta Hotel

Houston is a wonderful and welcoming city with so much to offer. The list of things to do could go on forever. Consider bringing the entire family and add some extra days to your hotel stay to truly experience it. FYI, for those flying in the hotel is about an equal distance from either of Houston’s major airports.

Stay Saturday night for the Texas Theme night at the hotel complete with County Line Dancing lessons and more.

But, since the 2023 UOAA National Conference is going to include incredible speakers, Q&A’s, meet and greets, social gatherings, the chance to explore all the latest ostomy products, and the opportunity to connect with more fellow ostomates, j-pouchers, and people with all types of continent diversions than you’ve probably even seen in one place, these are just a few ideas very close to The Royal Sonesta Galleria Hotel.

Because, chances are, you’ll probably end up spending almost all of your time there enjoying a huge gathering of people who have been through the same experiences you have and understand like nobody else can.

The 8th UOAA National Conference in Houston is a life-changing opportunity to make lifelong friends and you won’t want to miss a second of it.

 

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

TRAVELING WITH AN OSTOMY

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Since extra security precautions are still being taken at airports and other transit hubs worldwide, a little pre-planning and understanding of both security rules and your right to privacy can help you avoid problems in transit and enjoy your travels.

• TSA officers should NOT ask you to show your pouch—you may be asked to rub over your pouch outside your clothing so they can test your hand to rule out explosive residue.

• In particular, remember that all airport screenings must be conducted with courtesy, dignity and respect. You may request screening in a private area at all U.S. airports and most international destinations. If you encountered treatment outside of TSA protocol you can file a complaint, (please copy UOAA’s volunteer TSA Liaison gfsalamy@comcast.net)

A few additional tips to keep you on the go:

Carry a statement from your healthcare professional stating your need for ostomy supplies AS WELL AS a Travel Communications Card (which can be found here.)

UOAA's TSA Notification Card

TSA rules state that you can be screened without having to empty or expose your ostomy; however, you may need to conduct a self pat-down of the ostomy as a test.

NOTE: You may always have a travel companion with you during a private screening.

If you are traveling to a foreign country, bring this information written in the appropriate language. Google Translate may be helpful with translations. If you find you need additional supplies while traveling, a local pharmacy is a great starting point. The local pharmacist should be able to provide you with the necessary supplies and/or refer you to a local clinic/hospital for support.

Pre-cut all cut-to-fit barriers at home. Although current United States Transportation Safety Administration (TSA) rules allow curved point scissors with blades less than 4″ in length in your carry-on luggage, keeping your ostomy scissors in your checked luggage may avoid delay and extra screening

Consider purchasing travel insurance that guarantees getting you to a hospital, if necessary.

When it comes to supplies, OVERPACK! Better safe than sorry. Pack at least three days’ worth of ostomy supplies in your carry-on luggage, just in case your checked luggage is misplaced or there are delays and/or non-availability at your destination.

Drink, drink, drink. Nothing slows down a vacation more than dehydration.

If traveling by car, take advantage of rest areas. Stop and empty your pouch regularly; you never know how far it will be until the next one!

Pack ostomy-friendly snacks.

Keep a set of clean clothes handy whether in your carry-on luggage or in the trunk of your car.

Carry a few plastic bags and wet wipes for quick clean-up.

The idea of taking long trips with an ostomy can seem daunting. But with a little extra preparation, you can enjoy the trip of a lifetime.

 

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.

5 Reasons It’s Awesome to Have an Ostomy During the Holidays

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By Robin Glover

The holiday season is here! Yay! It’s a wonderful time to build lasting memories and celebrate shared traditions. The holidays always bring people together.

But is that always a good thing? In spirit, yes. But in practice…maybe not. There are crowds at the mall, long lines at the store, endless Amazon deliveries, presents to wrap, meals and small talk to make, and on top of it all, they want us to look nice and show up to parties, too.

All this bringing people together can be a bit much.

But what if you could find peace and serenity almost anytime you want? What if you could enjoy a few moments of quiet solitude among the festive chaos?

Well, if you’re lucky enough to have a colostomy or ileostomy, you have that power. And it’s just one of the ways having an ostomy during the holidays is pretty awesome.

  1. Instant Peace and Serenity

So Uncle Bob had a little bit too much eggnog. And now he’s passed out on the couch ripping off farts that would put a skunk to shame. Nobody wants to be near him.

But deep down, everyone’s a little jealous. He’s over there in his own little cloud getting some much-needed peace and quiet.

The problem is that Uncle Bob can’t control when he lets out a little gas. But, we ostomates with an ileostomy or colostomy can! We can have our own little cloud of solitude at the ready for when we need a little time alone.

Simply “burp” your pouch and suddenly the room empties and you’re surrounded by nothing but instant peace and serenity. Ahh…the joys of being an ostomate.

  1. Get in the Holiday Spirit

Those beige pouches can be a little drab. But there’s nothing a little holiday decorating can’t fix. No matter your type of ostomy or what holidays you celebrate, a few battery-powered lights and some glittery garland can turn you into a walking celebration of the medical miracle you are. Of course, premade holiday-themed pouch covers such as those pictured from C&S Pouch Covers, or several Etsy shops, could do the trick as well.

C&S Pouch Covers Gingerbread Holiday pouch cover

People will be totally jealous. They’ll wish they had an ostomy pouch to decorate. But they’ll just have to stick to ugly sweaters they got off Amazon like everyone else…boring.

  1. Last-Minute Stockings

Oh no! The dog ate Bailey’s stocking! Where are you going to put those awesome stocking stuffers you got them? You search around the house and can’t find a sock or a bag worth using.

You hear a commotion. Are the kids up already? You gotta hurry. Then, you remember that order of ostomy supplies that just came in. A pouch will be perfect! So you run to your supply stash and grab one.

Throw some candy in it, add the yo-yo and animal erasers, and you’re saved! Thank goodness for ostomies!

  1. Let It Go! Let It Go!

It’s last-minute gift buying time. You’ve been waiting in line for twenty minutes and then those dozen latkes or half-gallon of cider suddenly kick in and you need to go to the bathroom. Now, most people would either have to hold it not knowing when they’ll finally get to go, or get out of line and rush to the restroom.

But not you. Luckily, you can just go while you’re in line! Of course, this only works 50% of the time depending on whether you have a urostomy or colostomy/ileostomy. Unless you’re lucky enough to have both!

  1. Let It Signify Your Resilience

Your ostomy is a symbol of all you’ve been through and the faith, fortitude, and resilience it took to get through the toughest times.

So when you do actually get a quiet moment to reflect during the holidays, remember how far you’ve come and that you’re an inspiration to those around you.

Even if you didn’t welcome it or are having a difficult time right now, look at your ostomy as the reason you get to experience everything, good or bad, that the holiday season has to offer. Because an ostomy truly is a gift and, as an ostomate, your life is the greatest gift of all to those who love you. You are a miracle.

 

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