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

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By Robin Bergstein Berman

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

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

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

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

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

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

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

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

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

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

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

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

Robin and her husband of 34 years.

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

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

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

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

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

 

Ostomy Advocates Taking Action in Washington, DC for Digestive Diseases

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By Jeanine Gleba UOAA Advocacy Manager

Each year the Digestive Disease National Coalition (DDNC) hosts a Spring Public Policy Forum.  UOAA has been a member of this coalition for many years starting with our co-founder the late Linda Auckett.  DDNC’s mission is to work cooperatively to improve access to and the quality of digestive disease health care to promote the best possible medical outcome and quality of life for current and future patients.  Many in the ostomy community brought them to this surgery because of digestive medical conditions such as colon cancer and inflammatory bowel disease.

As the current Chairperson of the DDNC, I was especially proud of this year’s 34th Spring Public Policy Forum that was held March 3-4.  The coalition’s consulting team at Health Medicine Council worked tirelessly to ensure its success.  This year we were back to an all-in-person event with about 85 attendees representing 17 states. 

On Sunday afternoon patient advocates and coalition members represented organizations such as the Crohn’s and Colitis Foundation, Celiac Disease Foundation, The Oley Foundation, and the National Pancreas Foundation and gastroenterologists from numerous state societies. 

Team MA, NJ, NY advocating on Capitol Hill from left, Daniel Morgan (Mission Cure), Corey Greenbalt (Global Healthy Living Foundation), Emilie Schlitt (WOCN Society), Keyla Caba (UOAA), Sean McCabe (Legislative Director for Congressman Anthony D’Esposito), Jeanine Gleba (UOAA), Lisa Metzger (Oley Foundation), Dr. Maurice Cerulli (American Gastroenterological Association); in the back row Jane Holt (National Pancreas Foundation)

Featured presentations included the FDA, National Institutes of Health, All Copays Count Coalition, National Organization for Rare Diseases and the American Association for Cancer Research.  A special highlight of the afternoon was hearing the patient perspective from UOAA’s patient advocate Keyla Caba and the things she advocates for. Later that evening attendees had a networking opportunity at a cocktail reception. 

“I know my doctors have been very excited to know that patient voices and experiences in the digestive community are being shared with our legislators to impact & hopefully pass relevant Acts.” – Jennifer Locane (FL)

Monday morning we walked over to Capitol Hill and advocated for the DDNC public policy priorities in our respective state Congressional offices.  The morning started with breakfast in the Rayburn Building where myself and DDNC President Dr. Carroll Koscheski presented several awards including the Lifetime Achievement Award to Dale Dirks.  He has been working with the DDNC since its inception with founder Susan Rosenthal in the early 1980s.  

From left, Dr. Carroll Koscheski (President DDNC), Dale Dirks, Jeanine Gleba (Chairwoman DDNC

In the visits with staffers we continued to push for medical research funding and passage of the Safe Step Act (S. 652/H.R. 2630) and the HELP Copays Act (S. 1375/H.R. 830) along with the Medical Nutrition Therapy Act (S. 3297/H.R. 6407).  They are widely co-sponsored in a bipartisan way and stand a good chance of passage this session in Congress and we shared the impact on the ostomy community. The ostomy advocates also had an opportunity to discuss the negative impact of non-medical switching of ostomy supplies, a cost-shifting tactic. We also advocated for Medicare coverage of fistula supplies.  

This year there were quite a few ostomy advocates in attendance including Past President Susan Burns and UOAA Board of Director Lynn Wolfson, and Ashley Mann also representing FOW-USA. The WOCN Society also had a certified ostomy nurse, Emilie Schlitt (CWOCN), in attendance.  I was lucky that she was on my team.  I couldn’t help but notice that in all of the meetings I attended not a single staffer knew what an ostomy was, so it was a great teachable moment for us!

One of the new ostomy advocates, Jennifer Locane (FL), made the following comment to me about her experience joining us this year:

“I know my doctors have been very excited to know that patient voices and experiences in the digestive community are being shared with our legislators to impact & hopefully pass relevant Acts. It’s a blessing to do something good with all this pain, suffering, and experience & to make friends in the process!”

It’s because of sharing our collective patient stories annually that the DDNC continues to sustain progress on ensuring funding for research, public health, and treatment development, and on their coverage and access priorities. Together we do make a difference.

Ostomy Advocates in the ‘Room Where it Happens’

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

By UOAA Advocacy Manager Jeanine Gleba
UOAA Executive Director Christine Ryan

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

OPEN ENROLLMENT – YOUR CHOICES ARE IMPORTANT!

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Jeanine Gleba, UOAA Advocacy Manager
Sue Mueller, RN, BSN and UOAA Advocacy Committee Co-Chair

The Medicare Open Enrollment Period occurs each year from Oct. 15 to Dec. 7, and this gives consumers the chance to review and make changes to their current Medicare coverage. Many employers also have open enrollment for health insurance during this time period. Health care insurance plans are not equal and the plan you choose can make a difference in the amount and type of ostomy supplies you receive and the companies that provide your supplies. It’s crucial that people living with an ostomy understand their health insurance plan and shop around for the best plan to meet all of their medical needs. 

Although UOAA is not in the insurance business and does not give insurance advice, it does listen to our members and respond by taking action. We are committed to preserving your access to the supplies that you choose. UOAA’s Advocacy Committee has submitted federal comments and recommendations to the Centers for Medicare and Medicaid Services (CMS) as well as partnering with coalitions and endorsing policy papers that are used when advocating with healthcare insurance companies and key decision-makers. An example of this is the White Paper that UOAA co-authored and endorsed entitled “The Critical Need to Provide Ostomy Supplies Specific to Patient Need to Improve Health Outcomes”

As you do your research during your open enrollment period or become eligible for Medicare for the first time, be cautious with Medicare Advantage Plans (MC Advantage). These are also known as “Part C” and are a type of Medicare health plan offered by a private company that contracts with Medicare. Learn more about understanding Medicare Advantage plans.  According to data (from CMS) over half of eligible Medicare beneficiaries are now enrolled in private Medicare Advantage Plans (1). There are many known problems with these plans such as narrow provider networks, prior authorization requirements and high out-of-pocket costs. 

For the ostomy community, although MC Advantage Plans must cover the same medical services and treatments as original Medicare, how much they cover is up to them.  Some MC Advantage plans have less ostomy supply coverage than Medicare specifically by restricting where beneficiaries can shop for supplies and what kind they approve. UOAA has found that some ostomy patients with these plans must use products from multiple manufacturers. Some MC Advantage plan benefits exclude Medicare HCPCS (Healthcare Common Procedure Coding System) product codes for ostomy supplies such as filters, tape, adhesives, deodorants and other medically necessary items. What this means is that these supplies are not even available for you to choose.

There are many Medicare Advantage Plans in the United States. Each state’s insurance department approves the MC Advantage plans that can be sold in each state and each county within the state. So the plans vary from county to county. The MC Advantage plans usually have approved national provider networks for supplies however UOAA has found that in some counties the MC Advantage plans limit the suppliers you can use to local providers and do not let their beneficiaries choose from the national network providers. This may result in a limitation of your supply choices. One example UOAA has discovered is the difference in suppliers available in a rural county as compared to the national network provider offered to the residents in a large city.

Some MC Advantage Plans also have much lower reimbursement rates than traditional Medicare. These reduced fee schedules have resulted in suppliers to either stop taking individuals with an ostomy, offer lower quality products or offer a limited product line. (see the policy paper link above).  

This practice of restricting beneficiaries to particular brands, specific suppliers or less product coverage, limits patient access to the products they need. The consequence of this practice is that many ostomates are unable to obtain their prescribed ostomy supplies and are no longer able to effectively manage their ostomy.  

If you chose a high deductible plan, remember that although you have a lower monthly premium you will be paying out of pocket for all of your ostomy supplies which are expensive until you meet the deductible requirements. 

If you aren’t on Medicare but are selecting a new health plan, carefully review “basic” plans on the marketplace.  Some of these bare bones plans do not cover ostomy supplies.  

For more tips and information refer to the article released by UOAA’s Advocacy Committee entitled “Are You Covered? Know Your Healthcare Insurance and What You Need”. As you compare plan options and shop around, ask questions such as “Can I use my current supplier with this insurance?”. Here are more: 10 Questions to Ask Before You Choose a Health Plan.

 

 

1. Freed, Meredith, et al. “Half of All Eligible Medicare Beneficiaries Are Now Enrolled in Private Medicare Advantage Plans.” KFF, 1 May 2023, https://www.kff.org/policy-watch/half-of-all-eligible-medicare-beneficiaries-are-now-enrolled-in-private-medicare-advantage-plans/. Accessed 17 October 2023.

Resilience Story: Chris Seyler

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

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

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

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

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

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

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

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

Even You Can Raise Ostomy Awareness

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By Jeanine Gleba and Ed Pfueller, UOAA

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

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

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

Arty Awareness

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

Social Media Awareness

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

On the Scene or Behind the Scenes For Awareness

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

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

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

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

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

 

Celebrating Another Year of Ostomy Awareness Together

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Hollister is proud to support Ostomy Awareness Day! In partnership with United Ostomy Associations of America (UOAA), Hollister Incorporated is proud to stand with the entire ostomy community in celebration. Here are some ways you can learn something new, show your support, or connect with others in the global ostomy community.

Show Off Your Stoma Sticker

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

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

Join the Run for Resilience Ostomy 5K Races

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

Share Your Story with Us

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

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

 

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

UOAA Supporting Ostomy Nurse Certification

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Thanks to the ongoing generosity of the ostomy community donating to UOAA’s scholarship fund, we were able to provide this award in the amount of $3000 to another nurse. UOAA is excited to announce that the 2023 recipient of the Educational Award for Ostomy Nurse Certification is Ashlee Cranage from California!

Below a grateful and honored Ashlee shares a little bit about herself and her motivation to become a certified ostomy nurse.

My name is Ashlee Cranage and I am so honored to be the recipient of UOAA’s Educational Award for Ostomy Nurse Certification. Becoming a certified ostomy care nurse is no easy task, and I am grateful to be recognized by UOAA as I strive to make a difference in the ostomy community.

I joined Community Memorial Healthcare in Ventura, CA as a new graduate registered nurse six years ago, starting out on the post-surgical unit. In March 2022, I joined the inpatient Wound and Ostomy Care Department working alongside both a certified Wound Ostomy Continence (WOC) nurse and a certified wound specialist (CWS). This job opportunity has opened my eyes to the impact that certified ostomy nurses bring to the healthcare field, and most importantly patient care. I became a Certified Wound Care Nurse (CWCN) in September 2022 and became a Certified Ostomy Care Nurse (COCN) in April 2023. 

One thing that I have learned this past year is that there is such a need for certified ostomy care nurses, and I am excited to be able to contribute to that need and make a difference!

Prior to working in wound and ostomy care, my ostomy knowledge and skillset was very limited. I could proficiently change a simple pouching system, but I did not have the confidence to troubleshoot a leaking pouching system, nonetheless teach patients adequately about their ostomy care post-surgery. Once I began my new role, I started seeing patients with ostomies more frequently and I knew I needed to be more comfortable with their ostomy care. Following our certified WOC nurse periodically and being present for the meaningful conversations and positive impact that she had on her patients, made me want to further pursue my education to do this too. Being present for those hard conversations, watching her connect with her patients and continue to follow up with them post discharge as well, motivated me to be able to also achieve this higher skill level and knowledge to make an impact. 

With my recent certification in ostomy nursing, I now have the knowledge to better my nursing practice and care for the patients with ostomies that our department sees on a day-to-day basis. I have the expertise to be able to be there pre and post-surgery, help patients navigate life with an ostomy and support them throughout their journey. I aspire to continue to work alongside my colleagues with the creation of a free ostomy clinic for our community to better be able to help and support at any time during their ostomy journey, whether they’ve had it for 2 weeks or 20+ years. I also aspire to be a support system for my patients by joining my colleague in holding a monthly ostomy support group where individuals can come together to share their experiences, tips and tricks and seek information or support that they may need. For some, getting an ostomy, whether it is elective or emergent, may be a scary situation in the beginning. However, having a certified ostomy care nurse to help navigate any challenges and provide information and support can turn a scary situation into a learning opportunity full of hope and willingness to learn. 

One thing that I have learned this past year is that there is such a need for certified ostomy care nurses, and I am excited to be able to contribute to that need and make a difference!

Congratulations, Ashlee!

The next scholarship application will open, pending funding availability, in January 2024 and closes on June 30, 2024. 

If you’d like to donate to the Ostomy Nurse Scholarship Fund online, please complete the Donate Form, and at the bottom under the ”Additional Comments” section, please note “Ostomy Nurse Scholarship Fund”. You can also send a check made payable to UOAA, in the memo line include the Fund name, and mail to PO Box 2293, Biddeford, ME  04005-2293.

Resilience Story: Maria Sandoval

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

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

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

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

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

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

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

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

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

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

Me 19 days after my Ostomy Surgery.

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

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

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

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

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

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

Take Back Air Travel Rights

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By UOAA Advocacy Manager Jeanine Gleba

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

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

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

Background  

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

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

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

Present Opportunity for Advocacy

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

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

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

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

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

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

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

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

Get Involved

Below are ways you can get involved:

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

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

Conference Couple

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Ileostomates Andy and Sandee began their life adventures at a national ostomy conference 19 years ago.

By Ed Pfueller, UOAA Communications & Outreach Manager

When Andy Kyriacou stood up to ask a question of a panelist at the 2004 United Ostomy Association (UOA) Conference in Kentucky, he got more then just a good answer. He inadvertently found a new life partner.

The session was about dating and designed for single ostomates. Sandee Prechtel was on the panel and brought the perspective of dating again after losing her husband of 39 years. Andy, who became a widow losing his longtime wife the previous year, asked about her experience dating again after, now with an ostomy.

Andy and Sandee at the 2019 UOAA National Conference in Philadelphia. The couple met at a conference in 2004 and have not missed a conference since.

“Well, you kiss a lot of frogs before you find a prince,” Sandee recalls saying. They remember it being a great panel discussion that encouraged the audience to be confident in themselves.

During the rest of the conference, the pair would run into each here and there and chat briefly before sessions. “She was very easy to talk to,” Andy remembers.

As is tradition at UOA and now UOAA conferences, the closing night party ended with dancing. Andy asked Sandee to dance, and a small spark kindled. They danced the last dance of the evening.

“I did not want the evening to end so asked her to go for a walk along the Ohio River,” Andy remembers. “We walked and talked from around midnight to 1-2 am.”

They talked about life goals, former spouses, aspirations, and soon realized they had much in common. “We found out we both had two adult children and were in longtime marriages,” Sandee says.

“Well, you kiss a lot of frogs before you find a prince”

Andy was living in Connecticut and Sandee in Arizona so they exchanged emails and made tentative plans to attend the next conference the following year. Once they started emailing and talking on the phone, however, it became clear they’d want to see each other before the next conference.

“Sandee invited me to Tucson for New Years Eve, 2005 and I figured it would be either the longest or shortest few days, depending on how it went,” Andy remembers. Andy had a chance to meet her kids and it became clear their relationship would be more then just a friendship. “We planned future rendezvouses right after that,” Andy says.  The long-distance relationship was a fit for their mutual love of travel and in the next few years they met up in New Orleans, Virginia, Cleveland, Hartford and of course at the next UOA conference in 2005 in Anaheim.

When UOA annual conferences morphed into UOAA biennial conferences, they kept on attending to see each other and the many friends they have made over the years.

“It really is a life changing experience you can’t find anywhere else to be among that many ostomates and their partners. You have no idea who has an ostomy and who does not,” Sandee says. “There is always something new to learn, we look forward to going to explore all the new cities and locations.”

Both are also active volunteers in their local ostomy support groups in Hartford and Tucson. Andy served as Vice President in his group, Sandee was President of her group. At the 2017 National Conference in Irvine, Sandee was awarded the Affiliated Support Group Leadership Award by UOAA for her exemplary service to her local ostomy community.

“I did not want the evening to end so asked her to go for a walk along the Ohio River”

She is particularly proud of the informal and well attended new ostomate monthly meeting her group has been hosting for many years. “The tips they receive are really important in their recovery,” Sandee says. If a new ostomate has questions or concerns about dating and relationships the couple is happy to share their personal story.

Sandee has since stepped back from an ASG leadership role but Andy is quick to point out, “She is the glue that holds everything together.” When Andy retired in 2007 the couple began to split their time between Connecticut and Arizona.

In 2012 knowing that Sandee loves heart shaped rings, they picked out a diamond ring and Andy got down one knee.  Though not married on paper, they are committed life partners. They continue to always be up for new adventures.

“We’ve never been to Houston, we’re really looking forward to it!” They both say about UOAA’s 8th National Conference this August. “And As long as we are physically able to, we plan to keep going to each one.”

It will be 19 years since that fateful connection in Kentucky. We’ll save the last dance for them again this year in Houston and ask Sandee if she thinks she has found that prince.

Lee-Ann Watanabe–Living with an Ostomy

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My ulcerative colitis, IBD and ileostomy journeys have been a long road for sure! I spent most of my 30s trying every single pill, steroid, infusion, shot, diet, and remedy you could possibly fathom, all without relief. When the Mayo Clinic in Rochester, MN suggested that I undergo ileostomy surgery, I knew I was ready. After a decade of suffering, I was reborn on December 7th, 2015, following a permanent and total proctocolectomy with ileostomy.

My advice for others diagnosed with IBD and/or contemplating ostomy surgery, would be for them to ask ALL the questions; especially of your medical team. I was young and naive when first diagnosed with ulcerative colitis. Upon initial diagnosis, I didn’t think it was that serious. I didn’t believe I was sick, and all I wanted to do was get well and get back to racing triathlon. I took any and every medication doctors gave me, and I never questioned any of it. I never asked for a different way. I never thought that 10 years later, all the medications would stop working or not work at all. If I could do it over, I would find a doctor who was highly experienced with IBD patients.

If I could let people know something about IBD, it would be that I am a living, breathing example of invisible illness. I never looked sick. Even when sick, I continued my competitive triathlon racing. Don’t judge a book by its cover. My sport was my outlet; something I could control while my body continually failed me. Everything happens in your mind. With a positive outlook and a great attitude, everything is possible!

For many years, sick was my new normal. I was not living life; I was just surviving life with UC. Now, as an ostomate, I can say with 100% certainty that I am free. When I made the decision to have surgery, I decided I would advocate to show the world what people living with an ostomy can do. And you know what? There isn’t anything someone living with an ostomy CAN’T do!

Read more: https://meplus.convatec.com/articles/meet-lee-ann-watanabe/

 

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.

 

‘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

Hear Our Roar

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By UOAA Advocacy Manager Jeanine Gleba

When thinking of UOAA I am often reminded of William Shakespeare’s quote from A Midsummer Night’s Dream: “Though she be but little she is fierce.” United Ostomy Associations of America (UOAA) is a small national non-profit organization run by a dedicated volunteer Board of Directors with limited funding and a majority part-time 7-person staff. However, we are proud to be the leading organization advocating for the ostomy and continent diversion patient communities in the United States! We use several strategies to ensure our voices are heard including but not limited to:

1. We have a growing (2000) Advocacy Network of grassroots advocates who take time out of their busy schedules to take action when called upon to do so. They help us amplify our message! Please join our Advocacy Network. It’s a simple way to wet your feet in the advocacy world and doesn’t require a major time commitment.

2. We know we are stronger in numbers. UOAA is a member of several coalitions including the Access and Care Coalition, Digestive Disease National Coalition (DDNC) and the Safe Step Act Coalition where we share common goals and work together to achieve them. For example, the DDNC’s mission is to work cooperatively to improve access to and the quality of digestive disease health care in order to promote the best possible medical outcome and quality of life for current and future patients. Although UOAA is unable to have its own “ostomy” lobby days or fly-ins on the Hill (due to financial limitations), we are an important part of the annual DDNC Spring Public Policy forum. Ostomy advocates join forces with other digestive disease advocates to meet with Congressional staffers to share their stories and ask for support of our federal legislative priorities. These coalitions submit joint letters of requests or support/opposition to Congressional leaders and key regulatory decision-makers. An example of power and strength in numbers is the Safe Step Act Coalition which now comprises 215 patient organizations all advocating for passage of this important piece of legislation!

3. As a national organization we also develop position papers on topics concerning people living with an ostomy or continent diversion. These important documents might give background information, description of the impact on our community, and in some cases, advocate for change. We use them when talking to key decision-makers such as your elected officials, the media, or anyone who wants to know more about where UOAA stands on the topic/issue. An example of one of our position statements is our opposing stance on the cost-shifting tactic called “non-medical switching” of ostomy prosthetic supplies. Oftentimes, these papers include patient testimonials from the ostomy community to strengthen our message. You’re invited to share your story with UOAA and give permission for potential use in an advocacy effort.

4. We build relationships with like-minded organizations and collaborate on efforts that will benefit our collective groups. For example we frequently partner with both the Wound Ostomy Continence Nurses Society and Certification Board.

5. UOAA has a unique patient perspective and first-hand knowledge of the patient access issues facing the ostomy population. We are the trusted go-to source for ostomy information. We are compelled to take initiative and reach out to government agencies and Congressional Committees to share our views and extend the invitation to use us as a resource if they have any questions or if we can help in any way to move things forward. For example, in April 2023 we requested and attended a Patient Listening session with the FDA Center for Devices and Radiological Health (CDRH) Patient Engagement team to educate the FDA about the needs and challenges of this particular historically underserved patient population. We believe the FDA needs to understand what is important to the ostomy community when ostomy medical products are being developed and approved.

6. With regards to our federal priorities, 2023 was the start of the 118th congressional session. UOAA supports several bills related to the ostomy and continent diversion patient communities’ underlying medical conditions such as colon cancer or inflammatory bowel disease. Using the weight of our entire organization, we contact politicians via letters and in-person meetings to garner co-sponsors and “yes” votes. Some of the bills we are currently advocating for will significantly improve patient access to needed treatments:

· S 652/HR 2630, the Safe Step Act, would ensure that employer plans/PBMs (Pharmacy Benefit Managers) offer an expedient and medically reasonable step therapy exceptions process. This will empower individuals to navigate their insurance and help them access the treatments they need in time. Read the flyer and see the 215 orgs that support the bill.

· S 1375/HR 830, the HELP Copays Act, would ensure that copay assistance is counted towards a beneficiary’s deductible and out of pocket maximum. This will help patients afford their treatments. Read more.

For more information on our national efforts check out the 2023 UOAA Federal Advocacy Priorities Handout.

We all have the choice to do nothing or take action. I hope you choose UOAA and take action with us so we roar even louder!