UOAA Advocates Making an Impact on the Hill

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By Jeanine Gleba, UOAA Advocacy Manager

The Digestive Disease National Coalition (DDNC) is an advocacy organization composed of the major national voluntary and professional societies concerned with digestive diseases. DDNC’s mission is to work cooperatively to improve access to and the quality of digestive disease health care to promote the best possible medical outcome and quality of life for current and future patients.  UOAA has been a member of this coalition for many years.

Each year the DDNC hosts a Spring Public Policy Forum. This year they celebrated their 30th anniversary! This special event was a two-day advocacy conference held  March 1-2, 2020 that brought together patient advocates, health care providers, and organizational members of coalition. Passionate and dedicated advocates traveled from 28 states all across the country and Washington DC. Over two days, attendees heard from multiple panels of leaders in the digestive disease community, attended a reception celebrating the coalition as well as its champions, and advocated for medical research and patient care on Capitol Hill. 

UOAA had five ostomates representing UOAA and the ostomy community. We are grateful that Lacee Harper, Rena Münster,  Michael Quear, Mollie Tinnin and Lynn Wolfson joined UOAA President, Susan Burns, and myself in Washington, DC. They spoke up about improving treatment for digestive diseases, shared their ostomy story and advocated for legislation such as the Removing Barriers to Colorectal Cancer Screening Act and the Safe Step Act. While mingling with attendees, we also had the pleasure of meeting a new ostomate advocate, Nancy Pedersen, and a mother of a young daughter with an ostomy, Jessi Richards, who was attending as a representative for the Megacystis Microcolon Intestinal Hypoperistalisis Syndrome (MMIHS) Foundation. We hope both of them will advocate with UOAA in the future.

UOAA Advocates at DDNCThe greatest take-away message from honorees and guest panelists was the impact we make on the Hill.  For example, it is truly because of patient advocates sharing their stories that we have seen increases in medical research funding. To give you a glimpse into my day on the Hill, I was on Team 6 with a surgeon from Nebraska and an IBD patient advocate from Connecticut.  I found we were met with very positive responses by legislator staffers in the Senate and House. In many cases, the offices we visited were already co-sponsors of the different legislation pieces and this occurred on both sides of the aisle.  They certainly all “got” the Safe Step Act and need for proper gluten labeling. When I followed up with my Congressional office (NJ Rep. Josh Gottheimer), they informed me that they have now signed on to the Medical Nutrition Equity Act (H.R.2501). Our visit and advocacy message resulted in a positive outcome!

New this year we advocated about non-medical switching as it relates to ostomy supplies.  It can take patients and their medical team quite a while to find the right “fit” ostomy pouching application system. However, we are finding for example that insurers in some cases are restricting consumers to specific brands, some suppliers switch outpatient preferred choice of products for non-medical reasons such as cost and patients are restricted to using a different brand such as a generic, which do not always have the same quality or reliability. Ostomy supplies are prosthetic devices and a person’s complete pouching system is customized for their unique stoma fit and individual needs. It is not okay for others to just switch that out!  We urged Congress to limit out-of-pocket costs and curb current and future payer tactics proactively.

UOAA will continue these advocacy efforts throughout the year. If you have experienced your supplies being switched out for non-medical reasons and it resulted in restricted access to your preferred products or an increase in your out-of-pocket costs or it negatively impacted your health or quality of life, submit your story HERE.

Coronavirus is Not Affecting Ostomy Supply Production

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Updated: 4/10/20

The coronavirus is spreading around the world and some in the ostomy community are concerned if it will affect their access to ostomy supplies. UOAA reached out to the major ostomy manufacturers to see if the outbreak is currently impacting their production or supply chain. As of April 3, 2020 none of the manufacturers are currently reporting any issues in their operations as a result of the COVID-19 outbreak.

As with any natural disaster personal preparation is key and there are many steps you can take now to be prepared for any unexpected impact in your life or community. For those who become ill or have a compromised immune system, always contact your physician with any concerns. If you are on Medicare Part B (Medical Insurance) and become ill it covers a test to see if you have Coronavirus. For frequently asked questions and facts about this virus follow updates from the CDC on the latest COVID-19 guidelines.

These are the latest statements and information from leading ostomy product companies, they will be updated as needed.

11 Health

At 11 Health we understand that the challenges of COVID-19 extend beyond the needs of patients who are suffering from the virus. Our ostomy patients tell us that hospitals are cancelling their appointments and people are struggling to access their doctors and nurses; a big issue for people suffering from a chronic illness. That’s why we have launched our free 12 week remote patient monitoring Alfred SmartCare program to support ostomates using our patient coaches, tele-health nurses and dedicated app to provide a pro-active and preventative wellness program. We encourage you to visit us @ www.11health.com

With regard to access to supplies, we continue to safely manufacture and distribute. We currently have stocks in house of all Alfred SmartCare products and moving forward we do not anticipate any issues with smartbag supply.

 Hollister Incorporated Statement on the 2019 Novel Coronavirus

In response to the global health emergency concerning the spread of the 2019 Novel Coronavirus (COVID-19), Hollister Incorporated has taken steps to protect our Associates, and seeks to ensure that our customers experience no disruption to the supply of their products. Hollister is diligently cooperating with our suppliers across the globe to identify any potential impacts the coronavirus (COVID-19) may have on our suppliers as well as our own operations.
At this time, based on the information received to date, we do not anticipate an impact to our ability to supply or to our other business operations.
Hollister Incorporated continues to monitor this public health threat and considers the guidance provided by the World Health Organization, the US and European Centers for Disease Control and other sources in managing our overall ongoing response to this public health emergency.
We reassure you that we are taking appropriate measures to help ensure our customers, our Associates and our operations are cared for during this critical time. We continue to monitor the situation closely.
For additional inquiries, please contact corporate.communications@hollister.com.

3/24/20 Secure Start Services A Message from the Hollister Incorporated Family – COVID-19

Coloplast Statement

4/3/20

We hope you are doing well. We realize at this time, many of you may be dealing with lots of changes in your personal or family lives related to the COVID-19 outbreak. How can Coloplast® Care help you in this time of uncertainty? We aim to be the connection that builds your confidence in living with your intimate healthcare condition.
At this time, more than ever, assistance from Coloplast® Care may be more crucial as people stay home. The Coloplast Care team is still here for you, and we have extended our hours to six days a week to better support you.
Our Care Advisors are available by phone from 7 am to 7 pm Central Time, Monday – Friday and additionally 9 am to 1 pm Central Time on Saturdays
Here’s how to reach the Ostomy team

Call: 1-877-858-2656
E-mail: Care-us@Coloplast.com

We are here to support you with wellness information, product access information, and ostomy product samples. We also have some great educational resources for you available online, 24 x 7.

We have a number of educational resources available for you at our website, and encourage you to visit our resources: www.ostomy.coloplastcare.us

Concerns about access to supplies

We continue to safely manufacture and distribute our products. Currently, the COVID-19 outbreak is not impacting our ability to supply our ostomy and continence products, so we encourage you to continue to order your supplies as you regularly would.

At a time when many are concerned about receiving their medical supplies, Care Advisors can help coordinate product access by helping match you with product dealers who meet your insurance needs. If you are having trouble reaching your dealer or getting your medical supplies, please call us and we will ensure that you can continue to receive the products you need.

To read more about the initiatives that we have put in place globally and for updates related to the coronavirus, please visit our website. Let Coloplast Care be your reliable source of information for your intimate healthcare needs.

Kind regards,
Your Coloplast® team

ConvaTec Statement

At ConvaTec, we understand that the COVID-19 (Coronavirus) situation is impacting everyone. We’re doing our part to be socially responsible while still ensuring that our customers can contact us and receive the support they need.

To keep employees and customers safe, we’ve adjusted our work arrangements, including work from home where possible, to maintain social distancing.  As always, our me+ team of Wound, Ostomy and Continence Certified Nurses and product specialists are available, by phone or email, to answer any questions or concerns you may have.

If you have any questions or concerns, please contact our ConvaTec me+™ Support Team at 1-800-422-8811 (M-F, 8:30AM – 7:00 PM Eastern Time) or email cic@convatec.com.

ConvaTec Ostomy Care Global Impact
Our Ostomy products, whether produced by ConvaTec or in partnership with outsourced partners, are not manufactured in countries with high levels of reported cases of Coronavirus, this includes China. The situation is changing daily and therefore, ConvaTec has a dedicated team tasked with continually reviewing the situation, maintaining close collaboration with our suppliers and logistics partners, and communicating changes as the situation evolves.

Nu-Hope Statement

It is our recommendation that ostomates keep at least 1 box of spare pouches at all times. (This recommendation is independent of the COVID-19 outbreak). We do not recommend stockpiling supplies as this will stress the supply chain and likely cause delays and disruptions to your regular orders. Nu-Hope offers ½ boxes for sale through certain dealers.

Safe n Simple Statement

Safe n Simple would like to assure all of the ostomy community that we are well stocked on supplies and do not foresee any issues or concerns with being able to provide products needed during the Coronavirus outbreak.

Jennifer Borchek’s Story

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A Journey From Caregiver to Student, Ostomy Patient, and Nurse

My name is Jennifer Borchek, and I am a recent graduate of Chamberlain University with a Bachelor of Science in Nursing. I am a licensed registered nurse. I also have a colostomy. While I know that my condition changed a part of me, I also know that it has never defined me, my career choice, or who I have become.

A Career Path of Care

My passion for nursing stems from the love and care that I showed for my ailing grandmother during her time of need. My grandmother suffered from many health issues that demanded around the clock care. At the age of 15, my mother and I became the primary caregivers for my grandmother, so we relocated into our grandmother’s home to care for her as her needs increased. This responsibility was not something I took lightly. I spent many nights rushing down the stairs to my grandmother’s bedside when I would hear the slightest sound that might mean she needed attention. Eventually, the running up and down the stairs and the weight of my worry became too much; I picked an empty spot on the floor near my grandmother where I would sleep with one eye and ear open. By the time I graduated high school, I had developed a good sense of care and a strong interest in continuing my path in health care. I decided what better way to use my experience than to become a certified nursing assistant?

After my certification, I attended a local community college to complete my general education requirements and earn an Associate Degree of Science with honors. This brought me closer to my dream career of becoming a nurse. During this time, my grandmother passed away, and I took a break from school to work in a nursing home. My caring nature was fulfilled at my job by helping others know that their loved ones were well attended to. While working in this environment, I knew I could achieve more, and I decided to apply to nursing school to begin my path as a registered nurse. Soon after, I was accepted into a Bachelor program for nursing. I knew that it would be a challenge to continue my education, as balancing school, work, and family could be difficult, but I also knew that my dream and ambitions were strong. I was ready to face the academic and scheduling challenges ahead, but I was not prepared for the unexpected health issues that I encountered along the way.

A New Path with a Slight Turn

One day, while walking between classes, I started to feel a nagging pressure in my genital area. It became sporadic and seemed to have no pattern or reason for occurring. It would oddly come and go regardless of what I was doing at the time. I thought it would just go away, but it persisted. I spent countless months going back and forth to the gynecologist with the same concern. Consistent medical testing provided no reasons for the pain. For more than a year, I felt as though I was wanting and eventually begging to be heard by the doctor. Examination after examination, I started to think that maybe this was all in my head, and at times some doctors and nurses suggested that too. This was eventually disproved one evening when I felt a sudden burst of blood run down my legs after a hot bath. I rushed to the emergency room only to be told that I was “fine” and to follow up with my gynecologist. I went home that night heartbroken and confused; how could this not be enough to diagnose my health issue? So, yet again, I booked another appointment and headed over to the gynecologist’s office that I’d been to so many times before. After I was examined, the doctor removed her gloves, looked at me and said, “This is not your vagina anymore; this is your rectum. Go to the colorectal surgeon and tell them that you’re bleeding.” She walked out of the room without saying another word. I couldn’t even begin to comprehend what she was saying. Why would I need a surgeon? What does a colorectal surgeon have to do with my vagina? I was filled with a furious, confused, frustrated rage, and I was scared. I left with more questions than I arrived with, and now I was heading into unfamiliar territory. Did I have cancer? What kind of surgery would I need?

I later booked an appointment with a knowledgeable and focused colorectal surgeon at a well-respected teaching hospital. It took three very long weeks for my appointment date to arrive.

Diagnosis over Despair

I met the colorectal surgeon and he told me I had to be diagnosed under anesthesia. He suggested it was an anal fistula during the initial appointment. I was not sure what this diagnosis meant or how it happened, but in all, I liked and trusted this doctor. I felt as though I finally found someone who understood what I was going through and could diagnose what I had been complaining about for over a year. I scheduled the procedure during my one-week break from school. I liked that the doctor not only respected me and my concerns and feelings, but I also appreciated that he was very understanding of my desire to become a nurse. He helped me understand that my condition would not prevent me from living a normal life and achieving my degree.

Weeks later, I underwent anesthesia to be diagnosed. My surgeon told me after that I needed more surgeries to treat my newly discovered health issue. I had a rectovaginal fistula and he informed me that I had had it for at least five years. He also stated there was no exact reason why I had developed a fistula. While this made complete sense looking back at all my symptoms, I still cried when I heard this report. Suddenly, all the missing pieces were finally fitting together.

I had a diagnosis, but this was not the end of my battle. I underwent six separate surgeries all while maintaining honors in nursing school. The most recent was my ostomy surgery. During this time, I dropped down to only taking one class and had been unable to work a career-related job because of my health needs. The hours of studying were long and strenuous, but I fought through recovery one day at a time. Hauling heavy books and running from class to class were no longer a part of my day. Healing was just as important as learning, and I managed to balance the two. I often studied while soaking in the bathtub, as this was the doctor’s order to help the healing process.

During the increased workload of nursing school, I met two very caring friends, Laura and Bert, who helped me along the way. They were there for me when things got rough and made sure I didn’t fall behind in school during my health obstacles. I asked for health-related accommodations and was able to have Laura and Bert with me in every class and during clinical. This was a way to be sure that I would have the support and care if necessary. As a new ostomate, I knew anything can happen spontaneously. Having caring and trusting friends nearby encouraged me to relax about my condition and focus on my studies.

More Frustration, but Still Focused

Throughout my path, I was somewhat saddened to learn that ostomy surgery was a necessity. I understood that my fistula was not healing with the multiple surgeries that were performed, so the ostomy became a part of something I learned to accept. Even now my focus is to heal, rather than stress the need to reverse my ostomy before my fistula has completely healed. I was informed by my colorectal surgeon that rushing the process could result in the same challenges I had when I started my journey.

Jennifer with her close friend Jenell, left, whom she met at a UOAA Affiliated Support Group Meeting in Illinois.

Finding Friendship and Support through the Flaws

During my hospital stay for my ostomy surgery, my Wound, Ostomy and Continence (WOC) Nurse informed me that the Loyola University Medical Center held monthly ostomy support group meetings (One of 315 UOAA Affiliated Support Groups in the U.S.) and that she thought it would be beneficial for me to attend. She mentioned a young woman around my age who had recently had surgery. I thought it couldn’t hurt to show up.

I hoped to gain tips on care, products and living life differently with what seemed to be a flawed digestive system. I had already researched some of this online and in magazines, but I decided that more information could not hurt. Three weeks after major surgery, I walked through the door of the meeting room, still in pain and feeling a bit awkward about the whole thing. I sat down behind the youngest person in the room. She turned around and immediately greeted me with a friendly smile and introduced herself and her mom to me. She is in her late 20’s, her name is Jenell, and her stoma’s name is Piglet. Suddenly, I didn’t feel so nervous when Jenell asked why I came to the meeting. When I told her my story she said that it was unlike any story she had heard before. We spent the rest of the meeting talking about all things ostomy. We exchanged telephone numbers after the meeting and quickly became good friends.

Jenell eventually shared her own story with me and the story of naming her ostomy. Most ostomates feel naming their stoma helps them accept the transition of having an ostomy. With Jenell’s encouragement, I named my stoma “Rosita,” symbolizing that an ostomy reminds me of a rose. Jenell has helped me in so many ways by encouraging me about my health condition; she gave me confidence and showed me that even though my body changed, it doesn’t mean I changed as a person. She also taught me how to handle certain situations. For example, because of our invisible illnesses, we feel the need to educate the public on unseen chronic physical conditions. Together, the four of us – myself and Jenell and our stomas, Piglet and Rosita – make quite a team. We have a lot to be concerned about, but we also have a great future and much to be thankful for. We’ll face more challenges, but we’ll do it together.

My own experiences have helped me decide that I want to become a WOC Nurse and tell others with the same condition that they also can live a normal life. I want to help others with the transition of becoming an ostomate. I want others to know that they can follow their dreams, share their successes, lead by example, and show care from their experiences. I decorated my graduation cap to celebrate my decision and I included Rosita in my design to recognize that I have successfully overcome my challenges, and to show my ostomy is part of me and part of my future.

I am ecstatic to be sending out applications to be hired as a registered nurse because I never thought this day would come due to all my uncertain health issues. However, I will have to wait until my next surgery and through recovery. I know I’ll get there eventually because my challenges will not stop my dream!

Appreciation

All in all, I am very grateful for those I have in my life who have supported me: for Jenell for her friendship, for my surgeon with his knowledge and talents, for the WOC nurse that helped me get through my transition of being an ostomate, for my instructors for teaching me so well, for my classmates Laura and Bert and all the support they gave me, for Rosita for being so accommodating of my ongoing issues, and most importantly for my mother to whom I attribute my success. She encouraged my caring nature, has kept me strong and motivated, has lifted me when my spirits were low, and she is the reason I have fought so hard to become a registered nurse!

Positive Change is Happening!

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2019 Advocacy Accomplishments We Can All be Proud of

By UOAA Advocacy Manager Jeanine Gleba

I pride myself on being an “action person” and nothing gives me greater satisfaction than checking those boxes and crossing off items on my lists to-do (daily, short-term, long-term etc) both in my personal life and professionally. So I get super excited at year-end when I can reflect and look back at all that UOAA has accomplished in our advocacy efforts!  I’m happy to report 2019 was not an exception. Although many priorities are ongoing and I can’t actually cross them off my list, I remind myself that Rome was not built in a day and realize to make a major impact in the health care world it could take many years. The important thing for all of us to remember is that we are making progress and positive change is happening.

UOAA Ostomy Advocates at the DDNC

Ostomy advocates at the DDNC Public Policy Forum in March.

Each year UOAA’s Advocacy Committee establishes annual goals based on the strategies outlined in UOAA’s Advocacy Agenda. We have learned that the needs of the ostomy community are fluid and more often than not, I find each year that new priorities must get added to the list. These goals and priorities keep us organized and ensure we stay focused on where we can have the most effect given our organization’s limited resources.

In no particular order and not an all-inclusive list below will give you an idea of what we worked on and accomplished in 2019. This does not include Ostomy Awareness Day efforts as they were previously shared: 

Completed the “Expect More: Take Control of Your Healthcare” self-advocacy toolkit with checklists – All of the parts and resources are online here. In 2019 there were 579 downloads of the resources and the ostomy supply checklist had the most downloads at 247.

Best in Practice Research Project Launched – The purpose of this research project is to examine components of UOAA’s Ostomy and Continent Diversion Patient Bill of Rights (PBOR) and demonstrate best in practice standard guidelines for ostomy care. In 2019 we collected the data, in 2020 we will conduct the data analysis phase, publish results and ideally find ways to use the results to improve patient outcomes.

Centers for Medicare and Medicaid Services (CMS) Ostomy Supply Policy 

  • Conducted an online survey earlier and analyzed results to better understand the issue of obtaining greater than allowable quantities for those that have a medical necessity such as a high output stoma
  • Submitted comments and recommendations from UOAA to CMS for the Simplifying Documentation Initiative (SDI) and the Patients Over Paperwork Initiative to reduce burden as it relates to the ostomy supply process. 
  • We have a subcommittee comprised of medical professionals, manufacturer representatives, and patient advocates who will continue this effort in 2020.

Legislative Priorities 

  • Advocated on the Disability Integration Act (DIA), Removing Colorectal Screening Barriers, Ostomy Awareness Day, Step Therapy, and Competitive Bidding Program
  • Released two new position statements for DIA and Opioids
  • Supported the DDNC Step Therapy National Day of Advocacy

Additional Efforts to Expand Patient Bill of Rights

  • Safe n Simple is now including the PBOR Wallet Card in new ostomy patient starter kits and Byram Healthcare now includes it in their ostomy educational booklet

Further Advocacy Outreach and Collaborations 

  • Upfront with Ostomies Column: As a result of contacting the editor of the Wound Management Prevention journal UOAA now has its own column in this clinician journal.  5 articles were published in 2019
  • UOAA was invited by the CMS Quality organization to submit a new idea for the 2021 Improvement Activities used in the Merit-based Incentive Payment System. Ex-committee Member Barbara Dale and I submitted for consideration two modifications to existing improvement activities that focuses on re-evaluation of ostomy care and supplies
  • Access and Care Coalition: Successfully continued to ensure Congress refrains from expanding the Medicare Competitive Bidding program to include ostomy and urological supplies 
  • 3172 people downloaded the TSA Travel Communication Card
  • Started efforts with OEM of LAX airport in CA to make restroom improvements for ostomy accessibility; created UOAA guidelines for United States ostomy restroom accommodations 
  • Between myself and members of the Advocacy Committee we authored or contributed to 18 magazine and UOAA e-newsletter articles on advocacy-related topics

Looking forward to greater achievements in 2020!

Justin Mirigliani’s Story

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Ostomy Strong and Giving Back on the Ice

By Ed Pfueller, UOAA Communications and Outreach Manager

In 2015 things were looking up for Justin Mirigliani. An active father of two, his ulcerative colitis symptoms were in remission. In his free time, he was an avid weightlifter and loved skiing and playing ice hockey.

He probably could have been forgiven if he wanted to skip his yearly colonoscopy, it was his 10th test since his ulcerative colitis diagnosis in 2002. But his doctor made sure he was scheduled, and he went in. It was a decision that likely saved his life. He discovered he had to have his entire large intestine removed due to a severe precancerous condition called high grade dysplasia. A video before his ileostomy surgery shows the raw feelings of this life-changing event and the video below shows his journey to healing and thriving.

Since that surgery on September 24, 2015, he has vowed to do all he can to help others who suffer with IBD and to help remove the stigma attached to those who have a “bag.” Justin is determined to show, through his active lifestyle, that nothing is impossible with an ostomy. Justin has given himself an epic challenge to prove this point. He has continued weightlifting and is trying to become the first ostomate to bench press 405 lbs. You can see this journey documented on his YouTube channel The Strongest Ostomate in the World. (Parastomal hernias are a risk for all ostomates so check with your doctor before starting any exercise regimen.)

Though Justin had developed a small bulge around his stoma very early on, he is careful to complete lifts that do not add excessive internal pressure, like deadlifts or squats. He wears a binder to help support the area around his stoma anytime he lifts anything remotely heavy. In the past four years of heavy bench pressing, shoulder pressing, and bicep work, there has been no change in the bulge around his stoma. So as not to neglect his legs, Justin runs flights of stairs with a weighted vest. As he says, “It’s just a matter of improvising.”

Justin has also given back to the IBD community by creating Checkmates Charitable Association. Checkmates’ main event is a yearly hockey game with NHL alumni. Recently Justin decided to expand his charity’s mission to also benefit the ostomy community. “The UOAA Conference in Philadelphia has definitely opened my heart to wanting to include UOAA and do anything I can to help our community,” Justin says.

In 2020 Checkmates is expanding its mission into Canada by sponsoring a “Disease Without Borders” International NHL Celebrity Hockey tournament with its first game this February in Toronto, Ontario. The winner of that tournament will come down to the U.S. to play the Checkmates team at the Philadelphia Flyers Skate Zone in Voorhees, New Jersey in April. Justin’s ultimate goal is to use this year as the template for NHL Celebrity Hockey games and tournaments throughout cities in the US and Canada.

Justin says of the fundraiser, “We will never stop striving to make the lives of those with IBD and those living with an ostomy the best lives they can be!”

Like any other nonprofit organization, Checkmates is always happy for helping hands. If you are interested in volunteering with Checkmates please contact Justin. Checkmates is also looking for hockey players who want to play on the same ice with NHL stars. Players must be 18 or older, be able to ice skate forward and backward and be able to shoot a hockey puck.

Justin is grateful to his doctors, who saved his life, he and his family created this PSA to warn everyone to get their colonoscopies. Please share it. It just may save a life!

Until IBD has been eradicated and every ostomate is properly cared for, Justin promises that Checkmates will be on the front lines fighting for these communities to the best of its abilities. Justin believes “No matter what, your illness or ostomy will not hold you back!”

 

 

Support the Ostomy Community this Giving Season

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Give back to those in need with a gift to sustain this website and programs such as the Ostomy Patient Visiting Program

Gina Day, left, an ostomy nurse and affiliated support group leader confers with Certified Ostomy Visitor, Tim Slutter “It really takes another ostomate to help reassure new ostomates they are not alone and there are many others out there living a normal life. I hear time and time again how important this program is in making patients comfortable having an ostomy,” Tim says.

Imagine if everyone dealing with the emotions and physical changes of ostomy surgery could see a friendly face before them in their hospital room? Someone who knows what they are going through from their own experience and can tell them things will be alright – that they too can thrive in life with an ostomy. Someone who can listen to their feelings and make them feel less alone in those vulnerable first days.

Donate Today

UOAA’s Ostomy Patient Visiting Program is one of the most important services we provide through our over 300 Affiliated Support Groups (ASG). This program offers person-to-person support, reassurance and practical information to those who have or will have ostomy related surgery and their caregivers. Ostomy visitors who have completed UOAA’s Certified Visitors Training Course through their ASG will have a clear understanding of their role and responsibilities, and will strive to be a central member of the ostomy patient’s rehabilitation team (includes the surgeon, WOC nurse, hospital floor nurse and ostomy visitor.)

Your gift will enable UOAA to continue to provide services, such as this website filled with trusted information, and our Ostomy Patient Visiting Program. One of our goals is to update the certification course training manual and instructional video, and make the training program more internet-friendly which is critical to its future success. With the estimated 100,000 ostomy surgeries performed annually, it is vital for ASGs to have access to an up-to-date course to teach key skills to those who would like to become certified ostomy visitors. Click to donate.

 

 

 

 

 

 

 

 

 

This is your opportunity to make a difference, providing a vision of hope and reassurance to new ostomates and their caregivers that they are not alone. Thank you for your support.

United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) charitable organization and all donations are tax-deductible. For more information about giving to UOAA click here.
Please think of UOAA in your year-end giving plans and this #GivingTuesday.

 

 

 

 

 

 

 

 

 

 

 

 

 

Hollywood’s First Ostomy

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Subject of the movie White Boy Rick reveals why depicting his ostomy was critical to the story.

 

By R.S. Elvey

Hollywood movies, both fictional and nonfictional, thrive on melodramas depicting romance and violence. Car crashes, explosions, shootings, and all kinds of mayhem deliver gruesome injuries to victims and survivors. The 2018 film White Boy Rick, starring Matthew McConaughey and Richie Merritt, has all these components but is unique in showing the personal aftermath of a violent act – in this case scenes depicting an ostomy.

The film, set in the 1980s on Detroit’s eastside, tells the true story of Rick Wershe, Jr., called by the local newspapers “White Boy Rick” and his father Richard Wershe, Sr. During that decade, Ronald Reagan’s War on Drugs is in full swing and the FBI is anxious to break up drug dealing and crooked police in Detroit. Agents observe 14-year-old Rick mingling with a local drug lord and his father selling illegal guns to drug gangs. They meet with Rick and his father and offer them a deal. To prevent his father from going to jail, Rick, at 14, would become an informant working for the FBI. His father agrees to the deal and Rick becomes the youngest informant ever undercover for the FBI.

While working for the FBI, Rick becomes more and more involved in the daily activities of a leading Detroit drug lord and his gang. They become suspicious of Rick and he is shot in the stomach by a .357 magnum. The bullet enters and goes clean through, severely damaging his large intestine. He is rushed to Ascension St. John’s Hospital, Detroit, where lead surgeon Dr. Norman Bolz and others save his life. He awakes with a lifesaving ostomy.

The first time the ostomy pouch appears in the film is when Rick and his father are coming home from the hospital. Rick has his left hand over his stomach and the pouch is overlapping his pants. He is also depicted emptying his pouch. In a recent correspondence with Rick from prison he said, “When I woke up, I didn’t realize that I had it. I think I touched my stomach and then first felt the bag. I didn’t know what the bag was. Dr. Bolz came in and explained to me what the bag was and how it worked. The bullet had torn through my intestines and the doctors were hoping the intestines would heal and that it could be reversed, but that it would take a while.”

The real White Boy Rick young and old.

Rick Wershe, Jr. “White Boy Rick” when he was convicted in the 1980’s and today behind bars over 30 years later.
Top photo credit: Sony Pictures

 

While in the hospital the staff showed him how to empty and change his pouch. At home he was never seen by an ostomy nurse or received any other ostomy maintenance training. He said, “I basically had to learn on my own. Fortunately, I really didn’t have any skin problems. I had to keep the bag clean and was able to do a pretty good job. I had skin irritations but it was not too bad. I was lucky.” His friends were young and they were shocked when they saw his bag. But he said, “My family, especially my dad and grandparents, tried to be as helpful and supportive as they could.” He also met others who had ostomies. Rick had to pay for his own supplies at a local pharmacy which proved very expensive. His father wanted him to wash and reuse the pouches but Rick wouldn’t do that. He would use 2-3 new pouches a day.

Andy Weiss, one of the movie’s screenwriters, spoke numerous times with Rick while working on the screenplay. When asked why the ostomy scenes were included he said, “The ostomy scenes are the core of showing Rick’s vulnerability and what I was hoping to get from it was the sympathy and empathy that he deserved but never received from law enforcement or the people around him at that time.” Rick insisted that his ostomy should be part of the movie saying, “We included the ostomy scenes because I thought it was important to show young kids and adults that you can go through this and still be ok.” And get through it he did. Rick says that the ostomy proved to be no hindrance either socially or in his daily dealings. A year and a half after his original surgery, Dr. Bolz performed a successful revision.

Rick soon faced even greater challenges. Abandoned by the FBI and his family needing money, Rick and his father turned to the only way they knew how to make money, dealing drugs. Eventually, Rick was arrested and sentenced to 30 years for drug dealing. Now 49-years-old, he is scheduled to be paroled in 2020.

When ostomates watch the movie, the ostomy is immediately recognizable. But numerous reviewers of the movie never mention the ostomy scene. Ostomate, Robin Glover on ostomyconnection.com, wrote after viewing the film, “There were some inaccuracies, but it will definitely raise awareness and change what the word “ostomy” conjures up in the mind of anyone that sees it.” Joy Hooper, United Ostomy Associations of America’s 2019 WOCN of the Year was enthusiastic in her response to the film and said of the screenwriter, “I appreciate his way of displaying life with an ostomy. He did a superb job. He was able to show what many consider a negative aspect of life respectfully.”

White Boy Rick is now available on streaming services.

Ostomy Awareness Day 2019 Highlights

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“Funny how most people think an ostomy is the worst thing that could happen and I only see it as something that saved my life in so very many ways.”  Jeanne D. 

By Jeanine Gleba, Advocacy Manager

It’s such a simple truth – ostomies are life savers and yet, we continue to hear “I would rather die, then have an ostomy.”  That is why this year UOAA introduced the campaign “Operation Ostomy – A Life Saver”. Specifically, for Ostomy Awareness Day (OAD) held on October 5, 2019 the theme this year was fittingly “Ostomies Are Life-Savers”. It’s been exciting to see so many people embrace this theme from making custom life preservers to buying logo t-shirts for their entire families, to using #MyOstomyMyLifesaver to share their personal stories on social media, and educating others with this year’s infographic.

From Left, Gina Day, CWOCN and founder of the Ostomy Support Group of the Poconos and Advocacy Manager Jeanine Gleba pose with this year’s infographic banner at the East Stroudsburg, PA Run for Resilience on Ostomy Awareness Day.

For the second year in a row, our legislative champion was NJ Congressman Donald Payne as he introduced House Resolution 601 designating October 5th as National Ostomy Awareness Day. Furthermore, UOAA was honored to work with this year’s Ostomy Champion Grammy-Award winning recording artist Damon Little who has sung his way into our hearts by inviting all to celebrate and raise ostomy awareness in a video message.

UOAA had new ways to get involved with this special day including producing a new infographic that is available to download and print all year long at www.ostomy.org/ostomy-awareness-day/.   

This year for the first time the Centers for Medicare and Medicaid Services (CMS) recognized Ostomy Awareness Day in both their Medicare Learning Network and supplier newsletters. Also exciting was to have the support of the American Society of Colon and Rectal Surgeons (ASCRS) as they had a schedule of social media posts such as this one:

In addition, in 2019 we invited other organizations to collaborate with UOAA and had the privilege to raise ostomy awareness and engage the ostomy community during special events with these partners.  In case you missed the events, we are pleased to inform you that you can still tune into them virtually:

  • UOAA co-hosted with the International Foundation for Functional Gastrointestinal Disorders (IFFGD) and Therezia Alchoufete, MS, RD, LDN to bring you a Twitter Chat on Nutritional Support for People Living with an Ostomy.  If you missed the live chat, you can read it all here.
  • UOAA partnered with the WOCN Society to promote and celebrate ostomy awareness day. Listen to UOAA Advocacy Chair Joanna Burgess-Stocks talk all things advocacy, ostomy awareness and so much more in this special WOCTalk podcast episode! 
  • UOAA had the pleasure of working with the Crohn’s and Colitis Foundation to bring you a very special Facebook Live event with Double Baggin’ It. You can still watch it and learn so much from this inspiring duo and their healthy perspectives of having ostomy surgery!

Each year we expand our outreach with this annual event and here are a few statistics from 2019 activities:

  • Our Advocacy Network contacted legislators in 24 states requesting proclamations for Ostomy Awareness Day. The following proclamations were passed in these 11 places

            * State of California           * State of Colorado           * State of Connecticut

            * State of Massachusetts  * State of Missouri           * State of New Jersey       

            * State of Ohio                    * State of Pennsylvania   * State of South Carolina  

            * Frederick City, MD           * Kennebunk, ME

• 139,442 impressions from the Twitter Chat with a reach of 22,830.

• Over 200 personal #MyOstomyMyLifesaver stories shared on Instagram, Facebook and Twitter.

• Over 900 people took part in eight Run for Resilience Ostomy 5k event locations and a Worldwide Virtual 5k. 125 volunteered to make these ostomy awareness events a huge success.

UOAA is most grateful to all in the ostomy community who partnered with us or promoted OAD in their corner of the United States.

We hope you’ll join us next year when the big day will be Saturday, October 3, 2020. It will be the 10th anniversary of celebrating National Ostomy Awareness Day!  So get ready for an even bigger celebration.

Although Ostomy Awareness Day has come and gone, its impact will continue to spread across the country with each and every one of us.  Look for more from UOAA for our new “Operation Ostomy – A Life-Saver” campaign to stop stigma and save more lives.

Ostomy Awareness Starts with You

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It’s up to you. Will ostomy awareness, support and education stay in the shadows this year or touch lives and impact those in your community? Will you celebrate the resilience of people living with an ostomy and fight for those still in need?

If you want this shirt simply sign-up for any walk/run or the virtual option. Must order by Sep. 13 to get your size.

Ostomies are Life-Savers. It’s that simple, and that’s both the Ostomy Awareness Day theme and what will be emblazoned on the t-shirts of those gathering at the Run for Resilience Ostomy 5k awareness events September 28 and October 5 and 12, 2019.

You don’t have to run, or even walk a step, to support these charity events. It’s easy. If you’re not able to come out for an event (or simply like to sleep in) ­– donate to an event near you, or the worldwide virtual 5k event. You can also check out all the other ways to make a difference this Ostomy Awareness Day, Saturday, October 5, 2019.

Consider supporting that person who just had ostomy surgery in the past year and is seeking the confidence to get out in the world again. Attend or donate to the event of a double ostomate like Roxanne Camp, who despite countless surgeries, is still bringing ostomy awareness with a smile to her community in Arizona in the form of an Ostomy 5k fun run and a picnic open to all.

 

Phil Moyle in Spokane, WA started a fundraiser for this year’s Ostomy5k in Boise.

Start a fundraiser like Phil Moyle of the Inland Northwest Ostomy Support Groups and let your friends and family know why this cause is so close to your heart. Phil was touched by the passion of the Herrett family in Boise. They started a run for their two children who have ostomies in the hope they’ll be able to live in a world that will embrace their differences.

All around the country, those who are seeking empowerment over their health will be gathering with friends and family to walk, run or roll at an event near them or anywhere they want with the virtual 5k option. Most of the attendees typically do not have an ostomy, yet will be out on the streets to support you.  If you’ve never run before– consider this as motivation. The events are all beautiful park locations. Some of the event locations are simple fun runs while others are on a timed and certified courses that attract a handful of serious competitors. Check out www.ostomy5k.org for all the details.

Gather friends, your support group, co-workers or family and host a Virtual Ostomy 5k walk event and fundraiser wherever you want. We’ll send you t-shirts and race bibs and you can send us photos!

Consider starting a couch to 5k group with some friends (It’s easy with an app like this.). Walk with your support group, friends or family anywhere you want by signing up for the worldwide virtual ostomy 5k. We’ll mail you out a t-shirt and a race bib so you can be a real part of this national movement. If you don’t want a shirt, the event is free! 

You could plan on taking a fun trip to Nashville and meet fashion designer and survivor Manny Cuevas who is helping to organize the event there and is hand sewing ostomy pouch covers for top ostomates that complete the run. Run for those who are still battling illness and can’t host a run this year like Stephanie Urzi in New Jersey.

Lucky competitors may get an exclusive pouch cover from designer Manny Cuevas.

Support and donate to events hosted by dedicated ostomy nurses who have volunteered their time for you, such as Lara Leininger and Angela Richardson in North Carolina, Gina Day in Pennsylvania, Misty Edwards in Alabama, Deborah Nelson in Tennessee, and Amber Lords and Jessica Blakeslee in Idaho. They work all day with patients but still want to do more to create awareness in their own communities, and to benefit all people living with an ostomy in the United States.

UOAA’s national advocacy, trusted resources, and support groups nationwide help turn around countless lives. Event proceeds benefit UOAA as this is our major fundraiser.

Thanks to our national sponsors who help offset the costs of the events and believe in this mission. They volunteer, have reps, products and information on hand. Exclusive Diamond Sponsor Hollister will have employees in Stuarts Draft, VA that will be running in solidarity. Gold Sponsor Coloplast’s Vincent Faiola, who is also a support group leader, is gathering the ostomy community for an event in Vancouver, WA. Silver Sponsors Byram Healthcare and Colo-Majic are excited to connect with you and support the cause. Bronze Sponsor Safe-n-Simple’s Michele Pitylack and Holly Loos are hosting an event in Michigan and promoting the event nationwide. Bronze sponsors ConvaTec will also be on hand at the events to answer your questions and new sponsor Osto-EZ-Vent is proud to be a part of this event. And thanks so much to our local sponsors who do so much for the community spirit of these events.

Walk or roll because you can. Run if that is your goal. Donate or fundraise if you have the means. Or volunteer at an event near you and cheer on others. We’re sure friends and family have encouraged you to support a charity close to their heart before ­– now may be the time to ask a favor in return. Ostomy awareness simply saves lives, and it needs to start with us, the time is now. Show the world we’re alive and why they should care.

Click Here to Register at an Event Near You

Click Here to Donate or Start a Fundraiser

Click Here for a T-shirt and a Virtual Walk/Run you can do Anywhere

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