Yoga for Every Body

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By Elaine O’Rourke

As I yoga teacher I was fortunate that I had developed mind-body practices to really help with the emotional roller-coaster ride of getting my ostomy. I was 35 years old when I got my ileostomy due to Crohn’s disease. I opted to make it permanent after a year and then I made a full recovery and have felt amazing for the last 13 years.

While I was deathly ill and recovering from surgeries, the focused breathing practices helped me the most. I had complications from the surgeries so it took some time to really get back into the physical practice of the yoga poses. I had to be very mindful of any poses that stretched my scar sites. But gradually my body healed and I am able to do everything.

Luckily yoga has so much more to offer and there is something for every body. There are deep healing practices such as restorative, yin, breathing, mindfulness, meditation, mantra. The philosophy provides insights into being more aware of our thoughts and then in turn how they may be affecting our emotions and physical states.

Personally, I have gained so much insight and a much broader perspective on how to look at life. No one wants to get ill or have an ostomy but it has taught me first-hand how to be resilient, how much inner strength I have and to value my life and live it to the fullest.

I truly believe in the importance of moving the body (provided you are well enough) getting outside, breathing the fresh air, absorbing the sunlight or sitting under a shady tree is so good for us this time of year. Personally, I try and get up early in the summer months and go down the beach to walk, swim, do yoga and surf (being out early is best for my Irish skin). I also teach yoga on the beach which is a great experience.

It can be intimating to go to a yoga class and to find the right one. There is a wide variety of classes and styles. How you resonate with the teacher has a lot to do with the experience too. If you are brand new to yoga then I suggest starting with gentle, restorative or beginner yoga. If you don’t like a class or teacher then try other ones. It’s like shopping, not everything fits right and it’s the same with yoga. Do tell the instructor that you have an ostomy and you can educate them on what it is! Always empty your bag beforehand and don’t hesitate to go to the bathroom throughout the class if you feel it fill up. You want to create a comfortable environment for yourself. It doesn’t matter what other people think. If you have a hernia then make sure to wear your hernia belt and move cautiously.

I’ll be teaching Rise and Shine Yoga for Every Body at UOAA’s National Conference in Philadelphia this August. It will be a fun way to wake up and be part of this experience. Whether you are brand new to yoga or a seasoned practitioner I hope you will join me. I am a lighthearted teacher and I definitely don’t take the practice or teaching too seriously. In fact, if you can have a bit of a laugh while doing yoga then that is a bonus in my opinion!

I hope you enjoy the short yoga video of some standing poses.

ElaineOrourke.com

 

Do You Know Where We Stand?

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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.

Discover a World of Ostomy Products at UOAA’s National Conference

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Imagine if there was a place where over forty ostomy product manufacturers, accessory makers, distributors, lifestyle experts, and related support organizations could gather with ostomy patients from around the world? Well, UOAA’s 7th National Conference Exhibit Hall is that place, and everyone is invited. It will be open August 8 and 9, 2019 at the Philadelphia 201 Hotel in the heart of Philadelphia, Pennsylvania.

People return to UOAA’s biennial national conferences not only because of the lifelong friendships, education, and social events but also because of the exhibit hall. It is a fun one-stop experience to ask questions about your favorite supplies or discover what is the latest and greatest in the world of ostomy care. Attendees have the chance to sign-up for sample products and talk one-on-one with representatives of all the major and specialty ostomy product manufacturers. Visitors often find the passionate owners and inventors of unique ostomy products on hand to introduce you to their products.

 

UOAA is proud to be able to provide this space for our community to gather.  The conference runs Aug. 6-10, but If you can only come to our conference for one day you’ll want to consider registering for the exhibit hall days Thursday and Friday. There is even a free box lunch Friday for all those registered attendees who enter the exhibit hall. You may want to consider staying longer, however, to take advantage of the free stoma clinic, expert educational session and surgery specific meet-ups. And don’t miss social events such as the Roaring 20s Casino Night and Music Thursday and the Saturday night fashion show, desserts, and dancing. Be sure to stop by UOAA’s table where you can sign an important petition for the Ostomy and Continent Diversion Patient Bill of Rights and learn about all the upcoming events such as Ostomy Awareness Day and the Run for Resilience Ostomy 5k.

 

Here is a list of all the businesses and organizations exhibiting this August. Like UOAA, they are dedicated to improving the quality of life of people living with an ostomy. 

 

11 Health and Technologies Inc.
www.11Health.com • 657-266-0570

11 Health helps people living with medical bags by combining peer-to-peer support with unique patented SmartBags that collect patient generated data for preventative care. 11 Health thinks and acts differently from all established medical bag companies because we see the patient as a patient – not an end user.

ASCRS – Colon/Rectal Surgeons
www.fascrs.org • 847-290-9184

You are invited to visit the ASCRS Booth and receive information regarding services ASCRS can provide, including patient referrals and patient education brochures. The scope of colon and rectal surgery includes the small bowel, colon, rectum and anal areas.

Avadim Health, Inc.
www.theraworxprotect.com • 877-677-2723

Avadim Health Inc. is the Bionome Life Science company. Avadim’s flagship product Theraworx® Protect is a topical solution that supports the skin’s outer most layer, the stratum corneum, while remaining Non-Toxic and Safe.

B Braun Medical
www.bbraunusa.com • 800-227-2862

B. Braun Medical Inc. develops, manufactures, and markets innovative medical products and offers ostomy products including Flexima® 3S two-piece appliance with a unique guiding system and a High Output System. The myosto™ resource offers ostomates the ability to request product samples and educational resources on the website. Visit www.bbraunusa.com and www.myosto-mylife.com

Byram Healthcare
www.byramhealthcare.com • 800-227-2862

Byram is the leading service and solutions provider of disposable medical supplies delivered directly to the home while conveniently billing insurance plans. We provide convenience, affordability and choice™ to make a positive difference in the lives of the people we serve.

Calmoseptine, Inc.
www.calmoseptine.com • 714-840-3405

Calmospetine® Ointment protects and helps heal skin irritations from moisture such as urinary and fecal incontinence. It is also effective for irritations from perspiration, wound drainage, fecal and vaginal fistulas and feeding tube site leakage. Calmoseptine® temporarily relieves discomfort and itching. Free samples at our booth!

Cancer Support Community
www.cancersupportphiladelphia.org

Cancer Support Community is a leader in cancer support, and is the largest cancer support organization in the world that provides 100% free services and programs for individuals and families impacted by cancer. The Community serves those with cancer, who have a family member or friend with cancer and who have lost a loved one to cancer.

Celebration Ostomy Support Belt 
www.celebrationostomysupportbelt.com • 413-539-7704

Our ostomy Celebration Belt systems are designed to protect your dignity while allowing you to lead an active life. Learn how to measure for a correct fit, get wear and care information, and order your belt with confidence.

Colo-Majic Enterprises
www.colomajic.com • 866-611-6028

Colo-Majic® Flushable Liners are designed to be inserted into a two piece closed end pouch system to collect colostomy/ileostomy output. Liners will keep your pouch clean allowing for reuse and makes output disposal quick and easy.

Coloplast
www.coloplast.us • 888-726-7872

Coloplast develops products and services that make life easier for people with very personal and private medical conditions. Working closely with the people who use our products, we create solutions that are sensitive to their special needs. Our business includes ostomy care, interventional urology, continence care, wound & skin care.

ConvaTec
www.convatec.com • 800-422-8811

At ConvaTec, we exist to improve the lives of the people we touch and are committed to helping people living with an ostomy live the life they want with more confidence and freedom. Our me+ program gives you the support, insights and products you need. For more information, visit convatec.com.

Crohn’s & Colitis Foundation 
www.crohnscolitisfoundation.org  888-694-8872

The Crohn’s & Colitis Foundation is dedicated to finding cures for Crohn’s Disease and ulcerative colitis, and to improving the quality of life of children and adults affected by these diseases. The Foundation is at the forefront of research in inflammatory bowel diseases in addition to educating, supporting, and empowering patients and caregivers.

Edgepark
ww.edgepark.com • 800-321-0591

Edgepark is a leading provider of home-delivered, disposable medical products. We specialize in ostomy, wound care, urological, incontinence, diabetes and more, offer comprehensive insurance options and provide free nationwide delivery. To learn how we can help meet your supply needs, please call 800-321-0591 or visit www.edgepark.com.

Friends of Ostomates Worldwide
www.fowusa.org • 502-909-6669 • info@fowusa.org

Friends of Ostomates Worldwide-USA is a volunteer-run, non-profit organization that collects donated ostomy supplies from individuals and organizations in the United States and sends them and educational materials at no cost to ostomates in need around the world.

Girls With Guts
www.girlswithguts.org • info@girlswithguts.org

The vision of Girls With Guts is to establish a national support network that assists women with IBD and/or ostomies in their search for community, acceptance, and empowerment. This rapidly growing sisterhood helps to ensure that no woman will ever feel isolated by her disease.

Hollister Incorporated
www.hollister.com • 888-740-8999

At Hollister Incorporated, we are dedicated to delivering the highest standard of quality in medical products and services, and each member of the Hollister team is committed to making a difference in the lives of people who use our products and services.

Hy-Tape Int. 
www.hytape.com • 800-248-0101

Hy-Tape’s latex-free, waterproof, zinc oxide-based adhesive is soothing to delicate skin, and removes without compromising skin integrity. Our tape is perfect for extended ostomy wearing time, adhering securely so the end user can resume normal activities such as walking, exercising, bathing and swimming without worry of detachment.

KEM Enterprises, Inc.
www.kemonline.com • 616-676-0213

KEM Enterprises, Inc. manufactures the Osto-EZ-Vent.® The Osto-EZ-Vent® is the unique venting device designed for any Ostomy pouch, which allows quick, discreet release of air pressure. Invented by an Ostomate, the OEV™ gives the wearer complete control and confidence to lead an active life. Medicare code A4366. Visit us at kemOnline.com.

Marlen Manufacturing
www.marlenmfg.com • 216-292-7060

Since 1952, Marlen has been a leading innovator in ostomy care. Offering an extensive line of one-piece and two-piece systems for Ileostomies, Colostomies and Urostomies, Marlen has always strived to provide the highest quality products while meeting the comfort and security needs of our customers. Visit our website at www.marlenmfg.com

McKesson Patient Care Solutions
www.mpcs.mckesson.com • 855-404-6727

From doctor to doorstep, McKesson Patient Care Solutions provides healthcare that fits into your everyday life. With online support to answer all your questions, a team of customer service Reps to help you choose the right supplies, and fast, convenient shipping right to your door.

No You Cant’cer Foundation
www.noyoucantcerfoundation.org • 609-464-4647

The No You Cant’cer Foundation is a nonprofit organization working to dispel the negative stigmas surrounding ostomy bags and colorectal cancer while inspiring through song. By nationally distributing informational pamphlets and creating her awareness ribbon necklaces, cancer survivor and ostomate Melissa Marshall aims to help everyone say No You Cant’cer.

Nu-Hope Labs
www.nu-hope.com • 800-899-5017

Nu-Hope manufactures ostomy devices, accessories, belts, barriers and adhesives. We specialize in custom molded pouches and custom ostomy/hernia belts. Other highlights are our oval convex pouches, and stoma wafer hole cutters. Check out the Nu-Comfort belt and new for 2019, our moldable extended wear barrier. Don’t forget the Fun Run/Walk!

Oley Foundation
www.oley.org • 518-262-5079

The Oley Foundation is a non-profit organization providing information and support to those sustaining themselves on home infused and/or tube fed nutrition. Outcome data demonstrates that those connected to Oley have better outcome: significantly higher quality of life, less reactive depression, and a lower incidence of catheter-related sepsis.

Ostomy Canada Society
www.ostomycanada.ca • 888-969-9698

Ostomy Canada Society is a non-profit volunteer organization dedicated to all people with an ostomy and their families, helping them to live life to the fullest through support, education, collaboration and advocacy. www.ostomycanada.ca

Parthenon Co., Inc.
www.parthenoninc.com • 800-453-8898

Family owned and operated for over 50 years. The Parthenon Company is a manufacturer and discount retailer specializing in ostomy supplies servicing customers throughout the United States.

Philadelphia Ostomy Association
www.philaost.org

The Philadelphia Ostomy Association was established in 1949 as the Colostomy Ileostomy Rehabilitation Association. As time went on and Urostomy surgery was developed, we changed our name to the Philadelphia Ostomy Association to support all types of ostomates.

Pouch Place
www.pouchplace.com • 865-531-1285

Nurse owned and managed ostomy care and supplies. For more than 27 years the Pouch Place has offered a complete selection of ostomy, wound care and incontinence supplies treating each patient’s needs with thoughtful and respectful care from two store front locations and an online store serving patients nationwide.

Pull-thru Network, Inc.
www.pullthrunetwork.org • 309-262-0786

Pull-thru Network, Inc (PTN) is a volunteer-based non-profit organization dedicated to providing information, education, support and advocacy for families, children, teens and adults who are living with the challenges of congenital anorectal, colorectal, and/or urogenital disorders and any of the associated diagnoses.

Quality Life Association, Inc.
www.qla-ostomy.org • 662-801-5461

The Quality Life Association, Inc. (QLA) is a non-profit nationwide association aimed at meeting the special needs of the continent ostomate and to educate others on the latest advances in ostomy options.

Safe n Simple
www.sns-medical.com • 844-767-6334

Safe n simple is an innovator that develops and markets a full line of high quality, cost-effective ostomy accessory products. The patented Peri-Stoma Cleanser and Adhesive Remover wipes are their most popular product. Now offering Security Hernia/Ostomy Support Belts.

Sanitary Ostomy Systems, Inc.
www.sanitaryostomysystem.com • 805-441-6708

Discover Our Exclusive Pouch-Emptying Systems For Use At Home And Everywhere Else. THE SOS KIT: Compresses pouch contents into a detachable, disposable collection bag. The perfect reusable solution for ostomates & caregivers. THE TRAVELER KIT: Empties your pouch anytime, anywhere – even in your car! Completely disposable, discreet and easy.

Schena Ostomy Technologies, Inc.
www.ostomyezclean.com • 239-263-9957

The revolutionary EZ-Clean Pouch system can be cleaned in less than 3 minutes. Water under pressure is dispersed via a manifold inside the pouch to provide thorough, hygenic cleansing of the pouch and stoma while sitting on the toilet. See details on how to normalize life with an ostomy online at: www.ostomyezclean.com.

Simply Beautiful
www.simplybeautifulstore.com • 304-771-1773

Wraps and Lingerie that empower women and preteens to feel more confident and reveal your true beauty while thriving with an ostomy.

Stealth Belt Inc.
www.stealthbelt.com • 800-237-4491

A Stealth Belt is an ostomy support belt that is specially designed to hold an ostomy appliance securely and discreetly. A Stealth Belt may be worn 24/7 to provide comfort and give you privacy. Stealth Belt’s great design features include, light weight fabric, a zippered pouch compartment, and a range of adjustability for ease of sizing.

Stomagienics, Inc.
www.stomagienics.com • 225-939-1460

Stomagienics Inc., was created based on an extraordinary situation involving a family member who, after having ostomy surgery, solved a plaguing issue that occurs during the ostomy pouch replacement process. We use many of his original design principles to create a revolutionary new product that will change the lives of ostomates worldwide.

Surviving to Thriving
www.elaineorourke.com/ostomyprograms • 978-281-6126

Are you struggling to live a fulfilling life with your ostomy? Elaine O’Rourke, creator of the “Surviving to Thriving: Overcoming Ostomy Challenges Program, has had an ostomy since 2005 and understands the struggles are real! Stop by to claim your gift, 3 Simple Ways to Eliminate Fears About Your Ostomy.

Takeda
www.takeda.com • 877-825-3327

Takeda is a global, values-based, R&D-driven biopharmaceutical leader headquartered in Japan, committed to bringing Better Health and a Brighter Future to patients by translating science into highly-innovative medicines. Takeda focuses its R&D efforts on four therapeutic areas: Oncology, Gastroenterology (GI), Neuroscience and Rare Diseases. We also make targeted R&D investments in Plasma-Derived Therapies and Vaccines.

Trio Ostomy Care USA  

www.trioostomycare.us • 863-421-9400

Trio Ostomy USA, has an over-riding commitment to patient care with improvements to quality of life being at the heart of our business. We ensure that our products reach healthcare providers at an affordable level, offering the benefits of the most advanced silicone technology for all.

United Ostomy Associations of America (UOAA) Inc.
www.ostomy.org • 800-826-0826
United Ostomy Associations of America provides educational material, resources, support and advocacy for those who have or will have ostomy surgery, their family, caregivers and medical professionals. Stop by our booth to view our resources and show your support of the Ostomy and Continent Diversion Patient Bill of Rights by signing the online petition.

Youth Rally
www.youthrally.org • info@youthrally.org
More than 30 years after inception, the Youth Rally continues to provide an environment for young people to meet others who live with conditions of the bowel and bladder. Lasting friendships are formed, in a short 5 nights, in an atmosphere that promotes self-confidence and independence.

 

Click Here to learn more and register for UOAA’s 7th National Conference Aug. 6-10, 2019 in Philadelphia, PA.

Together We Can Change Lives

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Give to Make an impact in the ostomy community

 

Your support makes a difference in so many lives. People often turn to UOAA in times of concern and uncertainty. UOAA’s staff and volunteers provide assistance every day to people across the country who are seeking knowledge, resources and support as they navigate their way through living with an ostomy. Your donation to our mid-year campaign will ensure UOAA will continue to be a trusted resource for caregivers, family members and medical professionals. Please help us reach our fundraising goal of $110,000 this year.

“Thank you for all your support. Probably without my local support group and UOAA, I seriously doubt I would have been aware of a WOC nurse or a method to receive the medical treatment I thought was necessary. Now…I will be able to live a healthier, productive life.” J. R.

General Fund

Support UOAA as we continue to create and share our educational materials, connect people to affiliated support groups, maintain our informative website and engage with medical professionals who care for the ostomy community.

“I appreciate the support of UOAA. We use the website in the clinic as our major resource and the booklets are great for the staff in-services. I have given copies to the medical students when I give the ostomy lecture during their trauma rotation as well…” C. C.

Advocacy Fund 

Your financial contribution will help engage UOAA and its Advocacy Network (over 650 supporters) in legislative advocacy efforts.

“Just want to tell you what a wonderful advocacy tool you have provided to ostomates and affiliated support groups around the country…I can appreciate how the product of your work will encourage individuals and groups to move ahead with advocacy.” P. M.

Ostomy Awareness Fund 

Assist UOAA in dispelling the fear of undergoing this life-saving and life-restoring surgery. Attendees of our biennial conference (join us August 6-10, 2019 in Philadelphia) have the opportunity to learn from top medical professionals, network with fellow ostomates and share their life experiences.

“Keep up the good work! I have had an ileostomy since 2002…I am retired and now perform at festivals and enjoy life! Life begins at whatever age you shake off your fears and decide to fulfill your reason for being!” K. T. H.

With your donation we can empower people living with an ostomy or continent diversion, promote quality of life, and continue our work to erase the myths and stigma surrounding this life-saving surgery. Together we can change lives.

Sincerely,

Susan Burns
UOAA President

Click here to donate today or learn more. United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) charitable organization and all donations are tax deductible.  UOAA has a GuideStar Gold Seal of Transparency.

Traveling With Your Service Animal

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There are many things to think about when preparing for a trip. Whether traveling a few hours from home, or to another country, for a dream vacation, or for business, the more prepared you are, the more at ease you will feel. Luckily, there are resources available to assist you in planning for all sorts of travel destinations. Coloplast® Care offers comprehensive support for all areas of life, including tips on packing and planning for your trip. Making sure you have extra supplies, and the right contacts for any additional supplies you might need in case of an emergency at your destination will keep your mind calm and clear and allow for you to spend time enjoying your trip instead of worrying about the ‘what-ifs’ often associated with having an ostomy.

Traveling with your service animal can require a little extra preparation. If you are flying to your destination, be sure to save yourself time and hassle by calling the airline to understand their unique regulations and specifications, and to give them any additional information they may need about your unique situation. Here is a helpful checklist to ensure you have all the documentation you might need:

  • Certificate of your service animal
  • Current health records (including up to date vaccinations)
  • A note from your healthcare professional
  • A note from your veterinary clinic
  • A personal travel certificate which explains your condition, the medical supplies you are carrying and why you might need support and privacy as you go through security

Note that it can be extra helpful to have these documents already translated into the language of the country you will be visiting.

Depending on your destination, you might also want to look into other requirements, for example, if you are flying to an island such as Hawaii, there may be a quarantine period for your animal. If your travel plans are taking you to a country in Europe, making sure you have an ISO microchip is important as not all microchips can be read in different countries.

Leading up to the hours before your trip, you may want to limit food and water if your animal will be on a train or plane for several hours. Be sure to carry water for them to have as soon as you land. If your travels are by car, plan a route with easy places to stop to allow your animal to relieve themselves and get some exercise.

In the Airport

Arrive earlier than normal to the airport to ensure you have plenty of time to go through security and find your gate. Make sure the security personnel are aware that your animal is a service animal, this should help to speed up your security check and move you through faster. You should not have to be separated from your service animal at any time, it is your right and privilege to have them accompany you at all times.

Most airlines require a 48-hour advance notice of service animals on flights, be sure to contact your airline to make them aware that you will be traveling with your service animal, and ask any questions you might have about the day of travel.

Hotel Stays

Similar to your airline travel, you may want to contact your hotel before your stay. Let them know you will be traveling with your service animal and ask them to inform their staff. As a service animal is not a pet, they cannot be refused in any public space. As well, a hotel cannot charge a fee for having a service animal stay in a room unless they cause damage. Be sure to clean up after your dog as you would at home, and never leave your service animal in the hotel room alone. Even the best-trained ones can become anxious or stressed if left unattended in a new atmosphere.

Lastly, once you reach your destination, should you have any questions or need any medical supplies or advice, Coloplast has put together a downloadable list of all of their local offices around the world.  The more prepared you are before you travel, the more you will enjoy the trip and be at ease. Happy Travels!

For more information, visit www.coloplast.us.

 

Editor’s note: This educational article 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.

Singer’s Ostomy Past Leads Him to Partner with UOAA

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Grammy award-winning recording artist speaks out for ostomy awareness and support

The emotions all came flowing back. While touring at a radio station earlier this year in Louisville, Kentucky recording artist Damon Little heard of the tragic suicide of a 10-year-old boy Seven Bridges. There was a part of his own story that he had just recently felt compelled to reveal for the first time ­– he too had lived with a colostomy as Seven once did.

Grammy-winning recording artist Damon Little had an ostomy as a child and is now part of an outreach effort with UOAA to promote ostomy education and awareness.

“This boy’s story was my story. The feelings of isolation and pain of endless surgeries” says Little who had an ostomy for most of his youth until a reversal at age thirteen. Though many young ostomates are now encouraged to be active his teachers and parents at the time sheltered him from sports and other children, because of his ostomy.

Earlier in the year while working on a new inspirational song “Be Alright,” he could not shake the feeling that something was missing. Still unaware about Seven’s death he was inspired to record a testimony about his past on the track. It felt like it was a natural fit for the song’s powerful message.

After learning of Seven’s death the song seemed like fate and Little also wanted to do more to help people living with an ostomy. He and his wife reached out to  United Ostomy Associations of America (UOAA) to see what could be done to help the next person in need.

Ostomy Outreach

UOAA is now working with Little to spread the news of our 300 affiliated support groups, national advocacy program, and free educational resources available to all those seeking ostomy information and support. He is speaking out live on radio interviews and on stage at events around the country. His story is already touching people and compelling them to do more.

At an appearance in Elizabeth City, North Carolina a hospital caseworker asked for UOAA brochures to share with patients and a man living with an ostomy who was at the gathering bravely spoke out about his story and in support of UOAA’s mission.

Though he is best known for his Gospel music, Little has also agreed to record a non-denominational uplifting version of his song “Be Alright.” We hope this speaks to all those who may be struggling with their ostomy or other issues regardless of their background. Look for that to be released in a few weeks with a special shout-out to UOAA.

A Famous Musical Family

Little, a native of Baltimore, got started singing when he was just five-year-old with his family group consisting of his brothers and cousins. His first recording was with his uncle the legendary Clarence Fountain of The Blind Boys of Alabama. The Blind Boys of Alabama have been celebrated around the world and played for three U.S. Presidents.

In his own music career Little has spent weeks on the top 10 gospel charts and top 30 on urban AC billboard. He has traveled with numerous national and international tours performing for audiences as large as 300,000 people.

Little’s sound has been compared to the legendary Al Green and the late Philippe Wynne, the Spinners former lead singer.

Fighting Stigmas

Little has found that the volunteers of UOAA and many in the ostomy community are equally shaken by the suicide of young Seven and want to do much more to help end existing ostomy stigmas.

By joining forces with UOAA Little wants the public to know that ostomy or continent diversion surgery can occur at any age, and that often the emotional scars take the longest to heal. “Most people with an ostomy who connect to the support and education they need live full, active, and healthy lives,” says UOAA President Susan Burns, a longtime ostomate. “Many people don’t realize that with some help they can swim, play sports, work, be intimate, and fully embrace a second lease on life.”

Little is partnering with UOAA to reach out to communities everywhere, particularly underserved populations to dispel ostomy stigmas and connect people in need with support and educational resources. He’ll also serve as UOAA’s Ostomy Awareness Day Champion on October 5, 2019. Events include the Run for Resilience Ostomy 5k that will raise awareness in nine U.S. cities.

Most importantly, Damon Little wants you to know it will “Be Alright” and to embrace the life ostomy surgery has allowed you to have.

Connect with Damon Little:

Facebook @IamDamonLittle

Twitter: @IamDamonLittle

Instagram: @IamDamonLittle

Youtube: Damon Little Music

Meet These Super Ostomy Nurses

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They are all superheroes in our book. They come in on their day off for us, they heal us, they teach us, they empower us, they advocate for us, they volunteer for us, they learn for us, they run our support groups, they make us laugh and help dry our tears.

They are also a central part of UOAA’s 7th National Conference and our advocacy program. Every year we ask our UOAA Affiliated Support Groups to nominate an exemplary nurse for UOAA’s WOC Nurse of the Year Award.

Charlotte Popovich, center, was awarded last year’s WOC Nurse of The Year.

April 14-20, 2019 marks WOC Nurse Appreciation Week hosted by the Wound, Ostomy and Continence Nurses Society™ (WOCN®). This year WOCN® Society is celebrating and empowering WOC nurses to discover the superhero that lives within them.

This celebration is a fitting time for us to begin our challenge of selecting a winner in a group that are all heroes. We know many still hide in the shadows and their good deeds remain unrecognized.

Prepare to be inspired by these testimonials from our Affiliated Support Groups who nominated this year’s amazing group of nurses.

Shirley Abraham
Ostomy Support Group at Baylor University Medical Center in Texas

Shirley has been passionately involved in the Baylor University Medical Center (BUMC) Ostomy Support Group since its inception. As a member of the founding committee, she was instrumental in inaugurating the new and much needed support group in October 2018. BUMC is a large hospital with a substantial number of colorectal and urological surgery patients, and the need for such a support group was very evident. She works closely with the surgeons to provide a smooth discharge and post-operative recovery transition. She also works in Baylor’s out-patient ostomy clinic, serving patients with peristomal problems or pouching issues.

“She is well respected as an expert in her field, dedicated to her field and passionate about the quality of care that she delivers. She is a true example of a highly dedicated RN and skilled WOC nurse”

Janice Beitz
Philadelphia Ostomy Association

For close to 20 years Janice has been asking the Philadelphia Ostomy Association to periodically come speak to her WOC nursing class. We have never appeared at her class where the students haven’t thanked us for our time and loved the opportunity to speak to people with ostomies. The trickledown effect of being invited by Janice to speak at her WOC nursing class is that her students graduate and the ones that stay local to this area call us to visit their patients.

“Her strongest attribute would have to be her commitment to her student’s, UOAA as a support system that provides Information to patients and a Patient Visiting Service where ostomates visit patients pre and post op to assist in the rehabilitation of new ostomates in getting on with their lives by showing them they can still work, dress in stylish clothes, and basically live a relatively normal life after surgery.”

Erin Donohoe
Ileostomy Association of New York, Inc.

Erin distributes monthly meeting flyers to clients and family members who may benefit from our meetings, and posts meeting notices in a prominent location on the hospital floor. She participates in Board of Directors meetings and is on Ileostomy Association of New York’s (IANY’s) medical advisory board. Erin is available for contact by e-mail or phone if urgent situation/question arises. She has been willing to provide her services to home-bound ostomates and has been flexible regarding her fees for home visits. She has often provided these services gratis for patients in need.

“Erin has exhibited a high degree of professionalism and commitment befitting a representative of the WOC nurse profession. She is a strong advocate for IANY and believes in the positive impact that mutual support groups can confer. Since our BOD and general meetings are held on Sunday afternoons, she willingly sacrifices precious personal time to be present. She consistently shows compassion, understanding to persons with ostomies and their significant others who approach her for help and assistance.“

Diana Gallagher
North West Arkansas Ostomy Support Group

Diana started the group over ten years ago. It started out in a small room with about eight patients. It is because of her compassion, ability to educate and availability to both patients and doctors that our group has grown to a base of about 140 patients. We have patients that still come after ten years knowing they can always learn something new. Diana has extended our group hours for patients in need of education and information. Diana has a very prominent presence, and doctors and surgeons across the area rely on her expertise.

“Diana has a patients wellbeing in mind both physically and mentally. She is a constant in our ostomy community that is willing to help any ostomy patient. She is an advocate for patients!” 

Joy Hooper
Ostomy 2-1-1 inc. and South Georgia Ostomy Association

As the only support group in South Georgia, Joy will make home visits to help patients in rural areas as well as bigger cities. She will teach patients everything about caring for their ostomy. She opened an office where patients can get one-on-one care. She helps others find solutions to their problems. Joy will call and talk to any doctor or nurse interested in ostomy care. She travels around the country to teach ostomy care to other nurses.

“Joy Hooper is the most dedicted ostomy nurse. She invented an anatomical apron for helping patients understand their ostomy. She has so much knowledge about ostomy and will teach anyone who wants to know. Joy is a wonderful ostomy nurse and someone I can call on anytime day or night.”  

“Her LIFE is focused around not just our single ASG, but the entire Ostomy community. I would have to say that every attribute and commitment that Joy provides are CRUCIAL for not only our group, but to every other group in the ostomy WORLD.”

Charles Sloan
Boulder County Ostomy Support Group of Colorado

We have meetings in two different hospitals and Charles attends meetings in both facilities, even those that take place in the evening after he is off work. He makes time at the ostomy clinic for support group patients even when they have a full schedule. Charles developed a program for high school students and an in-house education program for the staff at his hospital to educate them in best practices at the bedside of ostomy patients. Charles is passionate about ostomies and designed WOC pins for those who complete his in-house ostomies 101 class. He also designed fun trading cards used for training programs.

“Our group takes a great deal of comfort knowing that Charles is always there for us. If there is an emergency we all know how to contact him and he will provide support.”

Angela Natale-Ryan, Stephanie D’Andrea, Ronnie Funke, Pam Hughes
Union County Ostomy Support Group of New Jersey

This group of four dedicated nurses interface with new members of the support group, and educates medical professionals on the importance of our visiting program. They have established our first Ostomy Center and attend meetings. From the moment I was marked my WOC nurse has been beside me and encouraged me to attend my first support group. In four years we have grown to a UOAA chapter with many members.

Our four WOC nurses are such a cohesive and dependable group of women who concur, coordinate and ensure that all ostomates are treated completely, they are determined to offer the best to all of us. They are problem solvers who never give up until all patients are comfortable. Ostomates are in the best hands possible with the four of them, who act as one!

United Ostomy Associations of America’s (UOAA) 2019 WOC Nurse of the Year Award will be presented during its 7th National Conference in Philadelphia this August.

Does an Ostomy Qualify as a Disability?

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Support the Disability Integration Act

By Jeanine Gleba UOAA Advocacy Manager

    Sue Mueller, BSN, CWOCN

Does an ostomy qualify as a disability? This is a question that UOAA receives on occasion. You are living with an ostomy, you feel pride that you are independent with your ostomy care, that you are able to problem solve the glitches that arise, you have resumed your former activities and tried a few new ones…life is good.  So it’s confusing when you hear someone tell you that you qualify under the Americans with Disabilities Act (ADA) as having a disability. Perhaps you can walk and talk and see and hear and are independent with your care. You may envision a disabled person as someone who needs help with care, uses a wheelchair or a walker; someone obviously disabled. Well, elimination of waste is a major body function and your elimination of waste has changed; in fact you need to wear a prosthetic device (ostomy appliance) to manage this change. You have a record of an impairment of a major body function, therefore you are protected by the provisions of the ADA. You do not have a visible disability, and not all disabilities are visible. (Please be aware that the term disabled means different things in different systems i.e. in Social Security disabled means unable to work.)

Fast forward 15-20-30 years, you have aged and might be experiencing any number of the challenges that aging brings….combine that with ostomy care and you may find yourself in a whole new world trying to get your needs met and survive in the environment of your choice. That’s when you will be especially glad that you are protected by civil and disability rights legislation such as the Rehabilitation Act of 1973, the ADA, Olmstead vs LS, case law and provisions of the Affordable Care Act. Basically, what these legal documents establish is the expectation that people living with disabilities have the same opportunities as people without disabilities; to live and work and participate in their communities, that the same services and supports that are provided in institutions are provided in the community. Many improvements have been accomplished but the institutional bias in service provision has not been eliminated and the services needed to support non-institutional living have not been created.  The Disability Integration Act (DIA) has been proposed in both the US House and Senate as a measure to end institutional bias and promote services in the community and extend the principles established in previous legislation.

The act is bipartisan legislation that ensures people with disabilities have a federally protected right to live and receive services in their own homes or in the setting of their choosing. The DIA further secures our Constitutionally protected right to liberty by preventing disabled people from being forced into costly institutional settings by unnecessary government regulations.

In addition, the DIA assures the full integration of disabled people in the community by ensuring that people with an ostomy and other conditions are able to exercise real choice in where they wish to receive attendant services, assistance with health-related tasks such as “maintenance and use of a stable ostomy” or other services that enable a person with a disability to live in the community such as in an assisted living facility and lead an independent life.

Our patient bill of rights advocacy efforts have illustrated the gap in expectations and the reality of care.  An issue facing the ostomy community especially as they age is that most assisted living facilities (ALF) across our country will not admit someone with an ostomy or in the rare cases where they do, the ALF no longer needs to retain them once the individual can no longer perform self-care with emptying or changing their pouch. Once the door to assisted living is closed the only option is placement in a long-term care facility/nursing home. Assisted Living homes and nursing homes are radically different environments.

We believe that emptying a pouch is a simple activity of daily living that should fall under toileting assistance/hygiene.  When the issues with care at assisted living facilities result in an ostomate requiring long term care in an institution, when that is not their choice it is a civil rights issue and is exactly what the DIA is trying to address. UOAA supports and advocates for this landmark legislation and encourages the ostomy community to take action here to help us garner legislator support and pass this in 2019.

Intestines Are Soooooo Overrated

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UOAA conference speaker strategically uses humor to help ostomy patients

By Ed Pfueller, UOAA

If you’re a patient of Janice Beitz, PhD, RN, CS, CNOR, CWOCN-AP, CRNP, APNC, ANEF, FNAP, FAAN,  she will likely look you in the eye and know when to employ humor and when not to. If you’re in a rut you may get an ostomy joke to break the ice. “You think this bag is full of crap? You should see my bother in law,” she once quipped, breaking down all barriers for a man struggling to adjust whose brother-in-law seemingly fit the description.

Dr. Janice Beitz is a longtime WOC Nurse and educator who will speak on the power of humor and hope in emotional healing after ostomy surgery.

Ostomy surgery and chronic illness is not a laughing matter, but how you handle it can be a key to your success. It does not seem to be a coincidence that some of the most well-adjusted ostomates tend to have a sense of humor. Humor can change a negative mindset for you and those around you.

Dr. Beitz has over 40 years of nursing experience in acute, sub-acute and outpatient care settings. She’s explored the science behind laughter and health in academia and has seen it in patient settings. She will be a featured speaker at UOAA’s National Conference in Philadelphia this August.

Her talk is entitled, Intestines Are Soooooo Overrated: Psychosocial/Physiological Issues For Ostomates. She’ll discuss the social, psychological and physical issues of having a fecal or urinary diversion. The session will describe the findings from scholarly work on these areas of interest. Strategies for ostomates to achieve a high quality of life including therapeutic use of humor will be emphasized.

Dr. Beitz also teaches the next generation of WOC Nurses as the director of the Rutgers University Camden Wound Ostomy Continence Nursing Education Program (WOCNEP). Students she has taken to visit the jovial and globetrotting members of the Ostomy Support Group of Philadelphia have left in shock. “They turn to me and say these people have traveled more and have a better life than I do!” Dr. Beitz said.

“They are seriously funny,” Dr. Beitz says of the Philadelphia group led by Stanley Cooper that is always laughing and living life to the fullest.

“She is committed to her students. She is committed to all WOC nurses, and she is committed to all patients that need a WOC nurse to ensure they receive the best possible care,” Stanley remarked.

“Janice loves to have a good laugh and will supply a good laugh when she can. When she spoke to our group, she started off with a funny cartoon from a newspaper that she projected on a screen.” Stanley.

“One thing she said to me after her appearance was that she always wanted to enter a room after being introduced to KC and the Sunshine Band singing Get Down Tonight. That is the type of good spirited, happy, energetic person that she is” Stanley said.

Emotional health will be touched upon in many other conference sessions as well. A session geared toward young adults will address body image and self-confidence with an ostomy. Relationships and sexuality sessions will often center on emotional health as well. Overcoming physical challenges often comes quicker than lingering emotional ones.

For those who have not had a UOAA Affiliated Support Group experience, the peer support at conference can provide a sense of camaraderie that gives an enlightening experience for the many who still struggle with the day-to-day challenges of living with an ostomy. Caregivers are also not forgotten at conference with a session on how to cope with caregiver stress.

UOAA’s vision is a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically and psychologically. Connect with us locally, online or at conference and get on a positive path.

At the conference, perhaps we can arrange to turn up “Get Down Tonight” as we welcome Dr. Beitz to give us a laugh and hope about life with an ostomy.

Ostomy Patients Enlighten Medical Staff

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By Ed Pfueller, UOAA

Amazing things can happen when ostomy patient advocates and clinicians come together.

Dr. Neilanjan Nandi, MD an IBD specialist at Hahnemann University Hospital in Philadelphia, trained in cities across the country and has long observed that “physicians were not comfortable with stoma care and troubleshooting as we should be.” “I learned early on the importance of knowing as much as possible by working with my patients.”

He decided to organize the hospital’s first “Hands On Ostomy Workshop” to empower his medical students, residents, and gastroenterology fellows with formal education.

To help bridge this gap with patients Hahnemann Outpatient WOC nurse Josephine Catanarzo suggested connecting the program with leaders of the Philadelphia’s UOAA Affiliated Support Group.

Stanley Cooper and the Philadelphia Ostomy Association, that is celebrating 70 years of service, and have a long history of talking to nursing students. They viewed this as another opportunity to bridge the gap between patients and those who serve them.

“The surgical staff and fellows got to hear directly from our engaging and dynamic patient panel about their experiences medically and personally with a stoma. This was the MOST profound aspect of the entire workshop. You can learn the medical and surgical nuances in textbooks. BUT you cannot understand the psychosocial impact unless you hear it directly and eloquently from our patients. Thank you to United Ostomy Associations of America patient advocates Sheldon, Stanley and the wonderful Stacey for taking he time to enlighten us!” Dr. Nandi says.

“We absolutely loved attending this,” Stanley says.  “For the Philadelphia Ostomy Association and UOAA it made Hahnemann aware that locally we have been in the Philadelphia area since 1949.  That we have a visiting service and that all our visitors are trained at a visitor’s training class that was developed by UOAA.  We had a lot of discussion on how today’s short hospital stays affect visits and a lot of times we can meet patients at their homes or at a restaurant for visits and that all helps in the patient’s rehabilitation.”

“Stanley was absolutely and overwhelmingly supportive of this initiative and brought in valuable educational resources courtesy of the UOAA for our surgical house staff. He was also able to provide us educational brochures to distribute to our patients as well,” Dr. Nandi says.

If you, your support group, or hospital is interested in some of UOAA’s educational guides you can view them here on ostomy.org or request printed materials, such as our New Ostomy Patient Guide. Our various Ostomy Patient Bill of Rights including practices for nurses to support their patients also help to educate and bridge the divides between patients and caregivers.

In addition to WOC nurses Josephine Catanarzo and Judi DiPerri  Hahnemann’s Colorectal surgeon David Stein was also invited to be a part of the workshop. Dr. Stein discussed what is involved in stoma site mapping and planning. The nurses shared clinical pearls on troubleshooting and application of ostomies.

“This was  truly was an amazing program!” Dr. Nandi says. “We learned about their individual stories and experiences with an ostomy and how they have continued to be true patient advocates within our greater community.”

One of Dr. Nandi’s patients Stacey Cavanaugh also provided her unique patient experience to the group.

“At our next event we are taking a suggestion from Anastasia, or Stacey, as she is affectionately known, and planning to have our docs wear an ostomy appliance for a day filled with fluid and to write about their experience and share it with the group. I think it will be more than novel and truly insightful for our young, and old! learners to gather. I also hope to invite other fellowship programs to attend our next ostomy workshop too.”

It’s inspiring what a few committed medical professionals and ostomy patients can do when they come together. Consider reaching out and bridging the gap where you live or work.

 

You can hear Dr. Nandi speak at this summer’s UOAA National Conference or connect with him on social media @fitwitmd  

To get involved with your local support group click here or follow our advocacy initiatives for other ways to make an impact.

UOAA Advocates in Action

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Ostomates Provide Insight to Lawmakers on Behalf of UOAA

By Ellyn Mantell and Michael Quear

Left, Ellyn Mantell with UOAA Advocacy Manager Jeanine Gleba, right, outside New Jersey Senator Cory Booker’s office.

UOAA Representative – Ellyn Mantell

There is so much frustration and dissatisfaction around the government right now, that it is easy to forget all of the wonderful things that continue to be done behind the scenes, and I want to share with you my experience in that regard. On Sunday, March 3, 2019, my wonderful support guy, husband, Bruce, and I traveled to Washington, DC to attend the annual Digestive Disease National Coalition meeting. I was asked to be a Patient Advocate accompanying Jeanine Gleba, Advocacy Manager for United Ostomy Associations of America. She and I have a special bond, since she lives in New Jersey and has attended support groups’ meetings with me, and we both have the same goal, which is increasing awareness and getting the most for ostomates.

After meeting key personnel and greeting other attendees on Sunday night, I felt empowered to be part of Team 5 the next day, when we would go to “the Hill!” Monday morning, following a warming breakfast (which we needed since it was windy and oh, so cold walking up toward the Capitol) and a basic logistics session, we headed to the Hart Building, not actually on “the Hill” but very exciting, nonetheless. I saw the offices of Senators about whom I had read or seen on television…a rare opportunity to be in the “Place Where It Happens”!

Our team was awesome and so inspiring! In addition to Jeanine and my presentation (visual aids are great, and my emergency kit pouch was a surefire way for the Legislative Aides to get the point: the necessity for funding for supplies, etc. as well as not being denied benefits for pre-existing conditions) we had two other Patient Advocates. Carolyn was invited by Megan Glynn, Manager of National Programs for the American Liver Foundation, and she is alive because of a living donor liver transplant. This is quite amazing, since the liver is composed of two lobes. One lobe can be transplanted and both donor and donor recipient’s livers will regenerate. It is truly amazing! Carolyn was making a request her life-saving  medications, which cost thousands monthly, may bankrupt a family trying to keep alive the patient they love…a terrible choice to have to make. Generics and off label usage may make a huge difference, but funding is always the issue.

Cheryl Velba then spoke with the Legislative Aides about her Short Bowel Syndrome, she is a Rare Disease Advocate. Surviving the removal of most of her colon and small intestine, she is one of the few to survive such a severe twisting of her bowel. This life-threatening occurrence, and the damage done to her body includes not only digestive issues but ocular ones, as well. She is asking for certain medications, again, costing thousands a month, be switched for generics or off-label usage. We all urged the aides to impress upon the Senators for whom they worked to limit out-of-pocket costs as well as curb current and future payer tactics to shift costs onto the patient.

The Digestive Disease National Coalition stands for Research of Digestive Diseases; Patient Access to Affordable, Quality Health Care; and Prevention and Awareness of Digestive Diseases. Digestive Diseases are chronic and, in many cases, debilitating and disabling. I was deeply honored to be able to bring awareness to the young aides who may not have known anything about our issues before yesterday, but when we were done, had to have learned another slice of life, the struggles of many…and hopefully, they will impress that upon our NJ legislators, Senator Menendez and Senator Booker.

 

UOAA Representative – Michael Quear

I recently attended the Digestive Disease National Coalition Annual Spring Public Policy Forum as a representative for UOAA. Actually, I participated in a group that was meeting with Congressional staff. My group was made up of Pennsylvania residents; so we met with staff of the PA Senate delegations and selected House Members staff. In my group I was the only person with an ostomy, but I certainly had experience with a digestive disease!

I was diagnosed with ulcerative colitis when I was 14; 4 years later I had my surgery – a total colectomy with a permanent ileostomy when I was 18. It’s hard to believe that was 42 years ago. Plus, I certainly knew my audience. I’d had the privilege of serving as professional staff for 20 years on the Committee on Science Space and Technology in the US House of Representatives.

I know these are busy folks and that we would likely have only 20, at best 30 minutes of their time. (We actually only had 15 minutes!) So I thought what are the points I would like them to remember about life for an ostomate and what impacts what they do by allocating funding and how healthcare policy impacts people like us.

First off, show and tell. When you say the word colostomy most people think a bag filled with et cetera. An ileostomy draws a blank stare. So I took along the appliance I wear, so they could feel it, see exactly what it looks like and how it works.  Using my thumb I explained my stoma. I also explained that despite the revolutionary advances in medical diagnostic equipment, prosthetics and drugs that in ostomy products there have not been many major breakthroughs in ostomy solutions, but research funding targeted for ostomy products could change this.

I also talked about the stigma that ostomates often feel.  In general, an ostomy is something some in the public feel is only slightly worse than death.  I was 19 when I heard someone say, “I’d rather be dead than wear a bag….” And I’ve heard similar remarks occasionally thru the years. As it is national Colorectal Cancer Awareness Month, I mentioned that people who suspected they had a serious gut issue were afraid to be seen by a doctor because of this stigma. I recommended their boss use his public platform to remind people this is a procedure that saves lives, not ruins them.

Finally, the cost.  I told them the cost of my appliance and that some people need to change it daily, others every 4-5 days. Regardless, over the course of a year costs add up. Therefore, it is important that insurance and government programs cover these costs. When Congress fiddles with health care funding and/or policy they need to think about people like me with serious gut disease in general.

Was it a long day? Yes!  Was it useful – I hope so!

But I think it is one that the staff will remember.

Ostomy Support for Colorectal Cancer Patients

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Whether Temporary or Permanent UOAA information and Support can help you Succeed in Life with an Ostomy.

By Ed Pfueller, UOAA

March is Colorectal Cancer Awareness Month. Colorectal cancer often has no warning signs or symptoms, and it affects more than 140,000 men and women each year. It is largely preventable with screening and treatable if caught early.

What can you do? Congress has introduced a bill Removing Barriers to Colorectal Cancer Screening Act (S668/H.R.1570). This act would fix a problem in Medicare that is a major deterrent to senior citizens getting screened. Currently, Medicare covers screening colonoscopies at no cost to the patient, but if polyps are removed during the screening procedure, beneficiaries are hit with unexpected costs.  Ouch!  This bill waives Medicare coinsurance requirements with respect to colorectal cancer screening tests, regardless of the code billed for a resulting diagnosis or procedure.

You can click here to help UOAA and other advocacy organizations advocate for final passage of this legislation in 2019.

You’ll also find that colorectal cancer survivors engage with United Ostomy Associations of America (UOAA) all year long.

If your cancer requires surgery you may have been told you’ll need an ostomy. In many cases, this is a temporary ileostomy (from the small intestine) or colostomy (large intestine). This may be required to give a portion of the bowel a chance to rest and heal. When healing has occurred, the colostomy can often be reversed and normal bowel function restored. A permanent colostomy may be required however when a disease affects the end part of the colon or rectum.

A colostomy is a surgically created opening in the abdomen in which a piece of the colon (large intestine) is brought outside the abdominal wall to create a stoma through which digested food passes into an external pouching system. A colostomy is created when a portion of the colon or rectum is removed due to a disease process such as colorectal cancer or a damaged area of the colon.

If you need lifesaving ostomy surgery remember-you are not alone. 725,000- 1 million people in the U.S. of all ages and backgrounds live with an ostomy. You too can do this, but it is critical to connect with UOAA resources. Especially seek out one of our almost 300 UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Peer support and preparation can put you on the path to success in what will be a challenging time both emotionally and physically.  Ask if the hospital has an ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

Our new ostomy patient guide is available to all who need it and is a great overview of what to expect. Our colostomy guide has even more in-depth information. You may feel too overwhelmed as you are discharged at the hospital to fully understand ostomy pouching systems and accessories and lifestyle considerations. If you have a question medical contact your doctor or nurse, in you have a quality of life question- UOAA likely has the answers.

Let’s clear up a few myths right from the start and learn some facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. After some trial and error, you may also eat most of the foods you have been able to eat in the past.

Certified Wound Ostomy and Continent Nurse Diana Gallagher has outlined Tips for a Succesful Recovery After Ostomy Surgery for us that you should use as a roadmap for success.

Contrary to what it may seem from social media not everyone with an ostomy will be a candidate for a reversal operation. We also have a blog post to learn more Facts About Ostomy Reversals.

We do encourage you to read patient stories and tell your own story. People have ostomies for a wide variety of reasons and people with bowel diseases you may not have been aware of often have an increased risk for colorectal cancer. This includes ulcerative colitis, Crohn’s disease, pre-cancerous polyps, and hereditary syndromes such as familial adenomatous polyposis (FAP) or hereditary non-polyposis colon cancer (HNPCC), or Lynch syndrome.

Celebrate Colorectal Cancer Awareness Month and connect with Fight Colorectal Cancer or the Colon Cancer Alliance on how to make an impact. And even if your ostomy is temporary, remember to speak out on Ostomy Awareness Day on October 5th, donate or join our advocacy efforts, or a support group to give back to the next cancer survivor in need.

UOAA is proud to be a member organization of the National Colorectal Cancer Roundtable (NCCRT). The NCCRT is a collaborative partnership with more than 100 member organizations across the nation, committed to taking action in the screening, prevention, and early detection of colorectal cancer.

You Can Always Learn Something New

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By Karin, Newbieostomy

Whether you’ve been a part of the ostomy community for 20+ years or joined it yesterday, United Ostomy Associations of America’s (UOAA) National Conference is worth attending. There are two main themes that come up time and time again when talking to people about their experiences at the conference: education and friendship. You can read about the bonds that are formed at the UOAA conference in the post Ostomy Camaraderie.

Regarding education, it doesn’t matter if you just got your ostomy or you’ve had it for years, there’s always something new to learn because technology advances and our bodies change over time. If you’re like me, you’ve scoured the internet looking for answers to all your questions and have probably found quite a few answers hopefully here on ostomy.org or on my blog newbieostomy.com, but you might still have some other questions that are left unanswered.

Queue UOAA’s National Conference. Held every two years UOAA does a fabulous job of bringing in professionals to share the most up-to-date research and information. At the last conference in Irvine, California they brought in doctors, surgeons, WOC nurses, nurses who also have an ostomy, a geneticist, a pharmacist, a psychologist, scientists, a dietician, TSA officials, and people with inspiring stories, and probably others that I’ve missed – all who are happy to answer your specific questions and share their knowledge. That’s quite a toolbox for us ostomates to have all in one place! Here is a tentative program of what to expect at the upcoming conference August 6-10, 2019 in Philadelphia, PA.

Conference attendees speaking directly to TSA agents about traveling with an ostomy.

This year there are even suggested sessions and reserved meeting space for people with similarities. There is a Young Adult Track (Discount if 25 and under), Pediatrics Track and a Caregivers Track, so feel free to bring your family or partner along as well.

“As a first-timer it was great, so much info.” – Eric, first-timer

I lean toward the studious side, so I brought a notepad and paper to every session I attended to help me soak up and remember as much knowledge as possible. In addition to (or in lieu of) taking notes during sessions, I’ve taken pictures of the slides I thought were really valuable.

Don’t want to draw attention to yourself with your hefty notebook or by holding your camera up every time there’s a new slide? Some speakers might also be willing to share their powerpoint presentations with you if you reach out to them after the event, or they might let you record the sessions if you get there early enough to ask permission.

“I have learned more in these few days than I have in the almost 6 years with my permanent ostomy.” – Daniel, first-timer

Wow. Right?

That’s pretty powerful.

With dozens of sessions offered, it’s can be hard to choose which one to go to if a couple of them conflict with each other. Luckily, each person has their own needs and interests so it’s likely that someone you know will go to a different session from you, which gives you both an opportunity to share what you’ve learned.

You might think that the sessions are only useful to a first timer, but not so. Derek has gone to every conference and has had his ostomy for almost 20 years, yet he still chooses to attend the “Basic Colostomy” session because there’s always something to learn and the other people who attend might ask a question he hasn’t thought of. While there are many repeat (basics) sessions offered every conference, the UOAA does a great job of bringing in new speakers to talk on different subjects as well. This year UOAA is also highlighting talks that will be of interest to both the new and experienced ostomate.

Like Derek, I also found value in the sessions from this conference even though I went to a ton of sessions at my first conference in 2015. I was happy to see new sessions offered, and to be able to attend a couple sessions that had conflicted with something else I’d prioritized hearing. I went to at least one repeat session that I noticed was really similar, but even there, I felt like I gained new knowledge and perspective because my brain can only hold so much information (even if we take notes).

In addition to attending the educational sessions and exploring the ostomy product exhibit hall, there was a hospitality area open every day where you could put a pushpin in the map of the United States to show where you’d come from, ask questions of local volunteers, and talk to members of the UOAA Advocacy and Communications team. There was also a free stoma clinic where attendees could sign up for an appointment to meet with a WOC nurse to troubleshoot pouching and skin troubles. On top of that, there were great speakers at the opening and closing ceremonies, and a really fun closing night party complete with dessert, dancing, and a perfectly executed fashion show.

This year the conference is at the Philadelphia 201 Hotel in the heart of the city and there are even more social events such as a free improv comedy show and music act, a Roaring 1920s Casino Night, and plenty of free time to explore an awesome city with new friends.

Education Amid Tragedy

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By Susan Burns, UOAA President

It’s heartbreaking. So many of us are torn apart by the recent news that a ten-year-old took his own life in Louisville, Kentucky. What we know is that he was a kind soul, this boy named Seven Bridges, and he was a victim of bullying. His medical history is also similar to many in our community in that he had an ostomy at a young age. He had an imperforate anus and braved over 20 surgeries in his short life. His mother Tami Charles said he lived an active life with an ostomy and loved swimming and playing as all children do.

In the past year, Tami said his ostomy was reversed but he continued to have some anal leakage and he was teased and ostracized at least in part because of the smell. It is unfortunate that many early news reports perpetrated the stigma that a “colostomy bag” smells and was the reason for the bullying and his despair. Their headline choices were faulty and sensational.

Source: Seven Bridges GoFundMe Page

What we don’t know is what goes on in the mind of a young child and why Seven took the most drastic of actions. His brave parents are taking the rare step of speaking out in this most difficult time. They want other kids suffering bullying to be #SevenStrong and demand that adults take meaningful action. They want all children to understand the dangers of bullying and have already organized local benefit events and forums. We should all be teaching our children love and acceptance of all differences.

Many of you have reached out to me feeling devastated and lost by this tragedy. You are also asking what you can do in light of such sad news beyond reaching out to the family online.

I just ask that you live the mission of UOAA in your daily lives and continue to raise ostomy awareness, advocacy and education in your community. More work needs to be done to fulfill our vision of a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically and psychologically.

UOAA relies on all of you in our community and specifically nurses and physicians to identify families of children who have had ostomies (and reversals) and make them aware of ostomy support resources.

Please spread the word that caregivers, parents and children are welcome at all of our almost 300 affiliated support groups nationwide. We know they may be the only parents or young people in many groups, but we have to start somewhere to build a network and provide a welcoming atmosphere to all at our affiliated support groups. Luckily there are also online support groups for families on Facebook where parents can find each other.

Several years ago we identified pediatric specific resources and education as a pressing need. It is just a start to the work that needs to be done but in the past year we released for your use:

  •  Every child matters! Pediatric Patient Bill of Rights, this is a statement of the rights to which infants, children, teens and their families should receive when facing ostomy surgery. It is a tool to empower parents/legal guardians to advocate for their child during all phases of care. These rights are meant to ensure a positive patient experience and best outcomes to achieve a desirable quality of life for the infant, child, or teen living with an ostomy and their family.
  • Our Pediatric Messages of Hope Brochure, written for parents of children with ostomies, emphasizes the lives of three adults who had ostomy surgery as children who are now living full lives and sharing their messages of hope. You can email oa@ostomy.org for copies. 
  • We also released our Pediatric Ostomy Resources document with links to support organizations, educational resources and teaching/comfort items such as the Awesome Ollie Ostomy Bear.

Online our Ostomy 101 infographic, emotional concerns after ostomy surgery, and surgery-specific ostomy guides are available to caregivers, parents, teachers, and school nurses and administrators.  Our New Ostomy Patients guides are mailed for free to all who need them. Let’s work to get these into the hands of those in need.

We have decided this year to also provide space for families to come together for peer-support and education at our 7th National Conference in Philadelphia in August. The dedicated pediatrics track will feature medical professionals from the Children’s Hospital of Philadelphia. Adults who have had ostomies since childhood such as model Jearlean Taylor will also be speaking to those gathered. In addition, our conference will have a session on the critical issue of emotional healing after surgery and will provide time to develop personal connections with other families.

We also support other organizations beyond UOAA. For years many of our affiliated support groups around the country have raised funds to send children to Youth Rally. This is a wonderful camp for children who have or one day may need an ostomy or intestinal/urinary diversion. We will continue to support their important mission and others in every way we can.

Now is a time of sadness but also a time to recommit to ostomy awareness to fight harmful stigmas. We can all educate not just on Ostomy Awareness Day but in your daily lives. Tell your story in an honest way. Point people to trusted ostomy resources online, speak out against bullying and injustice. Make a personal connection to the person distraught over the prospect of ostomy surgery in a social media post. Certify as an ostomy visitor. The list goes on, and the volunteers, board and staff of UOAA are here to help you change the life of the next person in need. Seven’s parents are speaking out and do not want his death to be in vain, and neither do I.

Our deepest condolences go out to the family and friends of Seven. We can’t even imagine the heartbreak and sadness you must be feeling from this tragedy.

Suicide Prevention Resources

Ostomy Support Resources

Ostomy Camaraderie

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UOAA’s National Conference the perfect place to bond

By Karin (Newbieostomy)

Ostomies don’t discriminate, it doesn’t matter your gender, sex, sexual orientation, race, ethnicity, religious beliefs, age, attitude toward life, social status, diet, or activity level. Whoever you are and wherever you come from, if you have an ostomy, you have something in common with 725,000 to 1,000,000 other Americans and a huge number of other people across the world. If you have an ostomy, you’ve probably experienced the anxiety, fear, and stages of grief that come with such a life-changing surgery. You may have experienced feelings of isolation, loneliness and despair, concern that your life was never going to be the same and that no one could possibly understand what you’ve gone through.

Karin and friends at the last UOAA National Conference in Irvine, California in 2017. A fashion show and dancing will again close out this year’s conference in Philadelphia Aug. 6-10.

It’s true that your life might never be the same, but it can absolutely be better. And it’s true that while only you have experienced your experiences, there are a ton of other people who can empathize and identify with what you’ve gone through by relating it to the similar experiences they’ve endured (and vice versa). United Ostomy Associations of America (UOAA) National Conference offers opportunities to meet these people face to face and when that happens, magic happens.

“I like figuring things out for myself. I just always figured this as my fight and nobody else is going to do it for me, so why go to a conference. However, I realized that I actually did have some unanswered questions and more than anything I was curious to see what I could learn at the conference. I’m glad I went, because all of my questions were answered, I made some new friends who share an immediate, strong connection and I found new courage and perspective that I didn’t realize was missing from my life.” – Nathan, first timer

Nathan has had his ostomy for seven years and still had questions. Good thing he came and got them answered! His “this is my fight” attitude is not unique to him (sorry, Nathan!). It may be your fight, but you don’t have to fight alone, and I think that’s a huge thing that people realize once they attend the conference. A perfect segue into one of my favorite parts of the conference: the unbreakable, timeless, instant bonds and friendships.

“I would say the most powerful aspect of the conference, that I was not expecting going into it, was how close everyone there seemed to be. It was my first UOAA conference, so I wasn’t sure exactly what to expect, but as soon as I got there (you) came up to introduce yourself, and within a few minutes we had a group that was speaking openly about anything and everything that came to mind.”

As a fairly introverted person who can often be quite clumsy when first starting a new conversation/friendship, I found the welcoming environment of everyone I met to be the highlight for me. The instant level of understanding between everyone was pretty special.” – Collin, first timer

At the UOAA conference, it’s like a weight is lifted, allowing people to candidly talk about the emotions, struggles, and achievements they’ve experienced. These people who were strangers a moment ago have an uncanny ability to say things that make you think “Yes! That! That’s exactly how I feel!” — An instant bond is created.

“[At UOAA’s Conference] I had no idea what to expect and went in knowing no one. When I got there I was quickly met by a girl who seemed around my age and had more energy and joy then I thought was even possible when first meeting someone. Her name is Alyssa and she instantly welcomed me to the “group”. My initial thought was I have no idea who these people are and she knows all of them and I am going to be the outsider. But I was totally wrong! I was welcomed and accepted by everyone instantly and next thing I know I am sitting in the pool with them, attending meals together, and exploring the conference together.

I learned that attending this conference was crucial to understanding myself, I learned that I can be myself still even though I have an ostomy and that my ostomy doesn’t hold me back or define me. We all talked openly about our struggles, which made me realize I am to the only going through the hard times, but most importantly we talked about the good things that have happened and come from our ostomy. We also talked about things having nothing to do with having an ostomy, and personally, I think when you can do both you have met a really good friend, they want to know who you are as a person not just who you are because you have an ostomy. Meeting this group of people was one of the most valuable things that happened at the conference.

Overall this conference was a life changing experience and I would really encourage anyone who has not attended one before to go to one. I think it is super important for younger ostomates because it gives you a chance to meet other people your age and just ask questions.” –Mallory, first timer

It was no surprise to me that Nathan, Collin and Mallory all had such positive things to say about their social experiences at the conference, because I had the same experiences at my first conference and again in 2017 (where I got to meet each of them)! We come to the conference for knowledge, but we keep coming back for the camaraderie.

UOAA’s National Conference is held every two years so while you may have missed the last one in Irvine, California, registration is now open for the 7th National Conference in Philadelphia from August 6-10, 2019.

 

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