Posts

By UOAA Advocacy Manager Jeanine Gleba

Under UOAA’s national advocacy program we develop position papers on topics concerning people living with an ostomy or continent diversion. This official “position” is formally approved by the Board of Directors. These important documents might give background information, description of the impact on our community, and in some cases, advocate for change. 

These papers also provide a perspective into UOAA’s views, and can be used by you, to strengthen your own self-advocacy efforts. Individuals and UOAA Affiliated Support Groups can 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. 

UOAA currently has position statements available on the following advocacy efforts:

 

Disability Integration Act (DIA) (S117/HR555)This civil rights bipartisan legislation would require insurance providers to cover community-based health care services for people with disabilities as an alternative to institutionalization. The DIA would ensure that people could not be prematurely forced into nursing facilities because they couldn’t get assistance with health-related tasks such as maintenance and use of a stable ostomy. This is a good thing and we support it! UOAA’s position is here

Medicare’s Competitive Bidding Program – UOAA is actively working to maintain the current Medicare reimbursement system for ostomy and urological products. Currently ostomy and urological supplies are not included in the Competitive Bidding Program and we want to keep it that way. UOAA’s full opposition is here

Opioid Crisis – UOAA wants to ensure that any plan, especially legislatively or regulatorily, to address the opioid crisis considers the needs of those who require the use of opioids for non-pain treatments of medical conditions such as high output stomas for some people living with an ostomy or fecal continent diversion. UOAA’s position is here

Removing Barriers to Colorectal Cancer Screening Act (S668/HR1570) – This act would eliminate cost-sharing for initial and follow-up colorectal cancer screening tests such as removal of polyps for Medicare beneficiaries. Cost-savings for senior citizens and move lives saved is a no-brainer. UOAA’s position is here.

All of our position statements are available for download and printing on our advocacy webpage.  We encourage our community to frequently check this page as efforts get updated or closed, and new issues may arise.

Bring Ostomy Awareness to your Neighborhood with the Run for Resilience Ostomy 5k

October 6 and 13, 2018

 

  1. Change a Life. The theme of World Ostomy Day on October 6, 2018 is “Speaking Out Changes Lives”. Speak out to smash stigmas and never let someone choose death over an ostomy ever again.
  2. Support the Dream of a Someone with an Ostomy. Some run for the first time, others walk to discover a new life after surgery. Donate to support a Run for Resilience location in your state, the worldwide Virtual 5k, or a participant fundraiser. If you or your support group start a fundraiser you can win prizes such as an exclusive Run for Resilience t-shirt, visor or group party. (Proceeds benefit the programs of UOAA)
  3. Have Fun and Get in Shape. All events are family-friendly and some feature special happening like a picnic (Arizona), giveaways, kids runs and activities, silent auction, free beer (Idaho),

    Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

    food or other perks. Check a location near you for local details. Feel better and crush your weekly step goal by starting to train today.

  4. You Can Do it Anywhere with a Virtual 5k. Challenge yourself and show the world what people living with an ostomy are capable of. Be a visible presence and walk/run anywhere you’d like in your community. Represent the resilience of all ostomates. Take photos of you and your friends doing the 5k and inspire others on social media.
  5. Win an exclusive designer ostomy pouch cover. Legendary Nashville fashion designer Manny Cuevas (a proud ostomate and race organizer) is hand making a pouch cover and it can be yours by registering as an ostomate and placing in the top 3 at each location or by gathering one of the biggest groups of family or friends to walk or run with you for the Virtual 5k.
  6. Get a free Ostomy Awareness Sticker. Register for the Virtual Ostomy 5k or pick one up at any of our 9 locations. You’ll also get a free race bib!
  7. Get a World Ostomy Day T-Shirt and Represent the USA. Register by Sept. 17th to be guaranteed your preferred race t-shirt size. Run athletic shirts are included with all event locations ($15 for the Virtual 5k). It’s the official event of #OstomyDayUSA, tag on social media to share your photos.colostomy bag, run for resilience, ostomy pouch, stoma bag, ostomy 5k, run for resilience
  8. Discover a New Ostomy Supply or Resource. Stop by sponsor and ostomy supply company display tables, or chat with a UOAArepresentative at events across the country.
  9. Get Outside and Run in Scenic Locales. The first week in October is a beautiful time of year and runs take place among some breathtaking beauty. A historic trail in Durham, lakeside in Michigan and Arizona, riverside parks in New Jersey, Nashville, Portland, Pennsylvania and Boise, along tree-lined streets in Birmingham, or your favorite spot with the Virtual 5k.
  10. You can Go at Your Own Pace or Cheer from the Sidelines. People of all ages and athletic backgrounds take part in the Ostomy 5k. An ostomate typically wins one of the runs while in others they are among the final finishers. It’s all about what resilience means to you.

Register or donate today at www.ostomy5k.org!

Inclusive Campaign by Lingerie Retailer Puts Ostomy in the Spotlight

By Ed Pfueller, UOAA

This feels like a moment. For many in the ostomy community seeing that someone with an ostomy has been included as a model, ostomy pouch showing, in a large national retail website was groundbreaking.

The viral #AerieREAL campaign showcased a smiling ostomate alongside other body positive models living with an insulin pump, wheelchair, crutches and conditions such as fibromyalgia and cancer. The brand has long highlighted “real, authentic and unretouched women.” You can find the photos scattered over their product pages.

The model, Gaylyn Henderson, has been sharing her infectious positivity with the ostomy community for years including in a past Ostomy Awareness Day Video produced by UOAA.

Her website Gutless and Glamorous chronicles her life speaking out in support of ostomy and IBD awareness. She was selected for the campaign after submitting a video for an open call for models. Gaylyn has since become a face of the campaign in mainstream media outlets such as People, CNN and Today.

She told Today Style “Having the support of an influential brand like American Eagle to promote positive ostomy awareness has already changed lives, and I know this because of the feedback I am seeing and receiving,” “To have this opportunity is surreal! For Aerie to give me this opportunity, I’m beyond grateful and thankful they would give someone like me a shot.”

The reaction has been uplifting and positive when shared on our Facebook Page and all around the web and social media.

Shaina W This is amazing! I had an ileostomy for 2 years because of ulcerative colitis and seeing this girl model hers with no fear is so incredible. I hope this sort of thing makes it less scary for people to go through this kind of surgery when they need it. I was so scared of how having an ileostomy would change my life that I wouldn’t even consider it for a couple years even though was so sick. This girl is showing how brave and awesome she is and I hope it inspires lots of people. 😃

Avigail V Fabulous! As an ostomate, I’m thrilled to see us represented!

Megan H If you read through the comments everyone has been posting in response, it has been a dialogue game changer! People were asking all sorts of questions (which is exactly what those of us promoting ostomy awareness want and need) and expressing tons of positivity! As the mom of two young kids (a 10-year-old daughter and 7-year-old son) with ostomies, I am over the moon with this campaign, even if it’s only in viral form, which for some people, is the only way they get their information.

Many people with an ostomy reading this post have probably already had a friend or family outside the ostomy community email you a news link to these photos. And that proves that it is working, and reaching the audience it needs to.

Want to keep up that momentum? Spread ostomy awareness far and wide and invite everyone you know to celebrate World Ostomy Day this year.

 

From the board room to construction, to long shifts in a hospital, people with living with an ostomy (colostomy, ileostomy, urostomy, ect.) work every job imaginable.  Embracing a “new normal” in life after ostomy surgery is key to living an active life, and that daily norm means going back to work.

According to the American Society of Colon and Rectal Surgeons once a person has recovered from surgery your ostomy should not limit your return to work. When you return depends on your individual recovery, ease of pouch management and how physical your job is (due to the increased risk of hernia).

Whether to tell your employer or co-workers is a personal choice depending on your unique work situation, but some feel it comes in handy if you require frequent breaks or other accommodations. Remember your co-workers will likely not realize you have an ostomy unless you tell them. With some preparation you’ll soon be confident in the workplace, and for many, feeling in better health than before surgery.

Here are a few tips from the UOAA Facebook community and Advocacy Network.

  1. Be Prepared:  In the case of a possible leak have a complete change of your ostomy supplies as well as a change of clothes you can bring to the bathroom. “Pack in a backpack, zippered tote, or small duffle bag that you can store in your desk drawer or locker” –Jane Ashley-publishing/author
  2. Know Your Rights: You have legal rights under the American Disabilities Act prohibiting employment-based discrimination. Workplace complaints to UOAA are rare but it can still occur. “My coworkers all knew, especially of the trials and tribulations pre-op. But still, there was hostility and harassment at times.” Jacque- Retired Government.
  3. Dispose/Empty Your Pouch Properly: Investigate the best restroom/changing facilities to empty or change your pouch. Consider the use of pouch or ostomy type deodorants. “My purse contains a 1-ounce bottle of Poo-Pourri, a Tide pen, a lubricating deodorant sachet, and baby wipes.” Margie, Academia.
  4. Find the Best Clothing for Your Job: Consider loose clothing if sitting for long hours or a stoma belt if you have an active job with lots of bending. A skin barrier may be helpful if you perspire on the job. “I wear a hernia belt”- Megan-Nursing
  5. Don’t Stress Stoma Noise: If your stoma decides to speak up at the next meeting relax, you may be the only one who notices “All bodies make sounds” Penny- Construction
  6. Hydrate: “Stay on top of your fluid intake. Don’t get distracted and have it result in an ER visit.” Heather Brigstock-Nursing
  7. Find Support: Know that you are not alone. UOAA has about 300 affiliated support groups around the United States that offeradvice, information and support.

Wish some preparation and patience you’ll soon be confident in the workplace, and for many, feeling in better health than before surgery.

Bruce and I were so young when we met at a dance, and for the first two decades of our married lives we never thought about life-altering health issues. And then in 1993, I had my first major bowel obstruction caused by an adhesion from a hysterectomy three months before. Suddenly we heard words like peritonitis, bowel resection and small bowel blockages. That vocabulary grew as the ramifications of 22 abdominal surgeries caused more and more scar tissue and concomitant problems. Finally, three years ago, after agonizing episodes and continuous visits to the emergency room, my surgeon and I agreed that it was time to see if an ileostomy would provide some relief.

I virtually bounced into the room with my ostomy nurse as she prepared to mark me right before my surgery, so hopeful that the tide would finally turn. She then walked us to the operating room prep area, preparing me for what was to come. But nothing prepared me for the way I saw myself the first time in my own full-length mirror. My body had betrayed me and I was now “marked” in a very different way. I looked to my lifelong dance partner with tears in my eyes.

Bruce took me in his arms and told me that not only did he love me, but that he had such respect and admiration for me, and I suppose “Lily,” as I refer to my stoma. My mother was Lillian and she gave me my first life, while Lily gave me my new life, and with that a sense that I can do anything. And the best news is that instead of spending time in the emergency and operating rooms, we have time to dance…even closer than ever before!

By the way, I am very proud to say that I am the president of my Ostomy Support Group in New Jersey, and I never miss an opportunity to welcome new or prospective members…how wonderful to be associated with this new life I so desperately needed, and so very much appreciate!

Events

Nothing Found

Sorry, no posts matched your criteria