The ostomy community is understandably very concerned about how the COVID-19 outbreak is affecting their daily lives, health, support networks, and access to ostomy supplies.

In this time of great uncertainty, UOAA recommends all individuals consult with their own primary care physicians with questions concerning their risk factor or if they exhibit any symptoms. Please follow the Center for Disease Control (CDC) website for actual up to date information. We recognize that many people living with an ostomy or continent diversion are older people and those with chronic disease and are therefore at higher risk of developing serious illness. Please also see CDC guidelines for people at risk

UOAA is also hearing from many Affiliated Support Groups who have prudently decided to cancel their upcoming meetings. Members should expect that their meetings will be canceled for the foreseeable future. Affiliated Support Groups are each independently run and members should contact their local leaders if they have any questions about their meetings. Community guidelines are also available from the CDC to assist leaders in deciding steps they should take to address public health concerns.  

UOAA reached out to the major ostomy manufacturers to see if the outbreak is currently impacting their production or supply chain. As of March 4, 2020 none of the manufacturers reported any issues in their operations as a result of the COVID-19 outbreak. Read our previous blog post for statements from individual manufacturers on this topic. Check with your distributor to see if there are any shipping delays due to increased demand of all goods at this time. 

If you develop a fever, cough and have difficulty breathing always contact your healthcare provider. They will determine if you are a candidate for a COVID-19 test. Medicare and private insurance should cover a test to see if you have coronavirus if requested from a physician. Additionally, Medicare is offering telemedicine options so people can stay home as much as possible during this crisis. Contact your private insurer to discover any additional benefits they may be offering at this time. For frequently asked questions and facts about this virus follow updates from the CDC on the latest COVID-19 guidelines.

UOAA will update this blog post with any information that may affect our community. 

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.

Updated: 3/24/20

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 March 4, 2020 none of the manufacturers are currently reporting any issues in their operations as a result of the COVID-19 outbreak. Also of note is that we are not aware of any ostomy products that are made in the Wuhan area of China where current quarantines are in place.

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.

Here are the statements from ostomy manufactures regarding the coronavirus and their supply production as of March 4, 2020. If the situation changes these statements will be updated.

 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

As the Coronavirus continues to spread, Coloplast is actively monitoring the situation and taking necessary precautions to keep our employees, customers and partners safe.

Our priorities are clear.

First, we will comply with and support whatever guidelines are put in place by local and global healthcare authorities. We will monitor this on an ongoing basis both locally and at our global headquarters in Copenhagen, Denmark, and we have implemented many initiatives to prevent and contain the spread of the virus.

Second, we will continue to serve you through this difficult period. We continue to engage with our customers, and safely manufacture and distribute our products.

Currently, the Coronavirus is not impacting our ability to supply our medical devices, so we encourage you to continue to order regular supply quantities and to avoid hoarding. To read more about the initiatives that we have put in place locally and globally, and for updates, please visit our website: https://www.coloplast.us/landing-pages/covid19/

We are doing our utmost to protect our employees while also continuing to serve you. Our local phone lines remain open, however, we ask for your patience and understanding if things take a little longer than normal.

Thank you, Coloplast

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.

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!

It’s Ivan’s 4th Birthday!
Four years ago today my amazing doctors, Dr. Leslie Demars and Dr. Joga Ivatury removed a huge tumor out of my pelvis and I woke up ALIVE and in a colostomy which I named (Ivan) after Dr. Ivatury, for life.
The first thing I asked Dr. Ivatury when I woke up was “did we get the f#@%r?” He smiled and smiled and said yes.

The next thing I asked was “am I in a bag?” He reluctantly said “yes.” My reaction? “Ok now let’s get me out of here so we can go to California.” I was working on a Tyra Banks product line at the time and did not want to miss the opportunity.

I was not always so positive. When I found out I had cancer in 2015 and would possibly be in a colostomy bag for life, I was devastated, to the point where I told my doctor “do NOT put me in a bag” so many times that he had to yell at me and say I have been up nights thinking about your surgery, I have no intention of putting you in a bag HOWEVER my job is to SAVE YOUR LIFE. So well, he was right.

I had such a different view on life when I woke up. God left me here to do some work and I was not going to let HIM down by playing small. I was going to live my life HUGE and give back to this world as much as I can.

I did allow myself to have strong feelings and concerns. “What if it smells, or makes noises or someone bumps it?” I would cry after cancer, but life was not over yet. What am I supposed to learn from this lesson and from what I am going through? It took me a lot of work to get to be okay. We got this one life.

I got up and forced myself to get out anyway. It helped so much that my kids, parents, and sister along with my husband and friends were supportive of me along the way.

I wanted to get back to doing the things I had enjoyed before cancer. One love was competing in Fitness America and WBFF shows in 2010 and 2011, where I placed in the top five in one of the shows I did. I knew I needed to love my body again and decided to tell the world in a live video to let people know to love the body you were given.

LeeAnne Hayden competes with her colostomy pouch and all at the 2017 America Fitness weekend in Las Vegas.

I was talking with my husband and friends and said I think I want to compete with “Ivan.” The second it came out of my mouth everyone was so supportive. I was sponsored for my training, plane, suit, costume, all of it. When I got there after months of training I almost didn’t want to do it. However, I knew I couldn’t let my fear stop me, I had to show everyone what I preached. The costume was great. It was a pair of wings that I could open and expand. I was shaking when I took my first steps out on that stage, I took a deep breath and opened the wings, hit my pose and completely teared up when everyone in the audience stood up clapping, screaming and some of them were crying. (Gosh I am starting to cry writing this) It was the most surreal moment ever. I felt amazing and supported and forgot I even had Ivan while I hit all my posing and walked off the stage to my friends in the back screaming and hugging me. It is a moment I will never forget.

There is such a stigma to ostomies, I have heard stories of how people have given up their lives because they didn’t want to be in one. I think we all need to be more vocal about it. So many more people could be saved. Thank you to UOAA for what you do with ostomy awareness!

That’s the way I’ve spent these last four years and I can’t wait to see where my life goes from here! I want to bring everything I have personally been through to all of you so that you may grow and live the life you want and deserve! Huge thank you to my wonderful doctors, my amazing family, my friends, all of you, and especially to GOD for allowing me to remain.

Whatever you want to do in life hope you run for it.

 

LeeAnne Hayden blogs about her life here and produces the LeeAnne in the City Podcast.

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 checklistsAll 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!

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!”

 

 

By UOAA Advocacy Manager Jeanine Gleba

Pinky O’Neil attends the 2014 MSA Pageant in October in Atlantic City. The same year she had Ileostomy surgery in March.

“A boa can hide a belly bump, if you arrange it carefully!” Ms. Senior America (MSA) alum, Pinky O’Neil, explains to me. After the Advocacy Session at UOAA’s National Conference in August, I met this very spunky woman. She left my presentation motivated to share it with her Affiliated Support Group to get more involved with advocacy on the national level. Since conference I have learned more about the essence of this “great advocate of positivity”, who recently celebrated her 85th birthday!

Pinky has had her ileostomy since 2014. When she started her ostomy journey at the age of 79, she was not well-informed. Supplies and advice were not readily available to her. To get her questions answered and get back to living her very busy full life she joined an ostomy support group, attended the past three UOAA national conferences, reads the e-newsletter and Phoenix magazine, and asks questions of suppliers.

Pinky teaching her 85th Big Birthday Bash attendees “I Feel Lucky” Line dance.

As a woman who has experienced many devastating set-backs in life, she learned early how to get her groove back on. Eventually after her long surgery recovery, Pinky resumed activities such as hosting monthly Singles Club Block parties and directing The Villages Singles Club Got Talent performing group, and her favorite physical activity – dancing. Pinky has been dancing for decades even doing One Woman Shows “Skeletons in your Closet” and “Mama was a Swinger” and opening her own business “Dancing Around with Pinky O’Neil”. All of this dancing brought her to the national stage.

Pinky O’Neil, Honorary Senior America & Esmeralda Ybarra Hetrick, Ms. Senior America 2019 from Pennsylvania, Pinky’s home State at the 2019 MSA pageant at the Resorts Hotel & Casino in Atlantic City.

As a Ms. Senior America (MSA), Pinky, has been strutting her stuff for years on the pageant circuit! She was crowned Ms. Virginia Senior America (MVSA) title in 1996. She has been involved with MSA ever since including being the MVSA State Director for ten years and then the MSA Public Relations Director for another ten years. She was awarded the Honorary Senior America title in 2006. The Ms. Senior America Pageant is “the world’s first and foremost pageant to emphasize and give honor to women who have reached the Age of Elegance,” according to the Senior America Mission Statement.

 

Pinky shared with me, “Presently, I mentor, recruit, present orientations, visit various MSA Pageants as well as attend the yearly national pageant in Atlantic City, New Jersey. We perform there with the Queens Choir. I am a member of the National Senior Alumni Association (NSAA). We solo at the pageant Alumni Show as well as direct & host MSA Showcases at Veterans Hospitals & Retirement facilities in our home states around the USA and on cruise ships to make others feel happy and youthful!” In addition, “As PR Director, I initiated & hosted Two Showcases at The White House in 2000 and organized a MSA entourage to St. Thomas in 2011. There we performed several MSA Showcases and collaborated with the St. Thomas Tourism Department to provide assistance for the first Ms. Virgin Island’s Senior America to tour the Mainland pageants.”

Pinky is an advocate for ostomates, because it is her strong desire to be a role model to others and spread the word that ostomies are lifesavers and that you should not allow your ostomy to hide you. From traveling the world to walking the stage runway, this is one woman who does not let her ostomy stop her!

 

By Steven Berit

I fainted the first time I lost a tooth. Not from the actual pain of the removal, but from the sight of the blood dripping from my mouth. I also fainted during a health talk in the sixth grade. Most people would call me “squeamish,” and I would agree. The sight of blood or even the mention of anything related to the human body can easily send me into a spiral of emotions typically resulting in me waking up in the nurse’s office. So, you can imagine my apprehension when the doctors first suggested the idea of me receiving a colectomy.

Hi, I’m Steven Berit. I’m eighteen years old and I am a senior in high school. I live in Pennsylvania with my mom, my dad, and my sister when she is home from college. I live a pretty “normal” life. I go to school, play football, and hang out with friends just like anyone else my age would do. The only difference between me and everyone else is that I have an ostomy bag and they don’t. This small detail isn’t even noticeable for most, but at first, it certainly was noticeable to me.

I was sixteen when I was first diagnosed with ulcerative colitis. The next year and a half would be full of trial and error, and with each passing day the errors stuck out more and more. Mesalamine, Remicade, Entyvio, and Xeljanz were just a few of the never-ending drugs that I was prescribed. The only thing that seemed to be working was steroids, but both my doctors and my acne-ridden face agreed that this was not a permanent solution. Finally, in July of 2019 while in my latest stint on the 5th floor of the Children’s Hospital of Philadelphia, I made the decision to say good-bye to my very inflamed, friend- my colon.

I don’t remember much of the first night following the surgery, but the next couple of days stick out in my mind vividly. Well, I mean I clearly remember the restless nights. As for the actual stoma itself, this took me some time before I had my first encounter with it eye-to-eye or eye-to-intestine in this case. The second night was one of the worst nights of my life. I guess the anesthesia had worn off and with it came the regret. Yes, that second night I thought I made the biggest mistake of my life. There I laid in a hospital bed way too small for my eighteen-year-old frame contemplating if I could ever recover from this setback in my life.

Well, the sun rose and with it time for my first bag change. I remember screaming- a lot. They told me that the stoma couldn’t feel pain, but what they failed to mention was that I could still feel the pain of my hair ripping off my body as they pulled the adhesive off my skin. Trust me your average eighteen-year-old boy has plenty of hair to go around, but your eighteen-year-old boy that has been steroids for the last year and change has more hair than one would openly like to admit. But, as the bag came off, I got my first glimpse of my future in the form of a beautiful, red stump known as my stoma.

The next couple of weeks would come and go with relatively little struggle, but as summer came to an end my biggest challenge approached- going to school. I tried every possible combination of tucking my bag into my pants until I came to the realization that no one cared. Either people didn’t take notice of the bag of stool attached to my body or they too were busy and caught up with their own lives to care about what secret I kept hidden behind my shirt. It was my first time since being diagnosed with UC where I felt “normal” at school. Which was odd because to most this was the least “normal” I had ever been.

No, my journey with my ostomy was not one I would describe as love at first sight. But it has grown on me over time. Yes, I still need my parents help to change my bag every three days, but the once shrieks of pain have now subsided into murmurs. I now go to school every day like a new person. I no longer have fears of finding where the nearest bathroom is or if I am going to be able to take a test for thirty minutes without a wave of urgency coming over me forcing me to drop everything and make a mad dash to the nearest restroom. Instead, most days go by without any thoughts of UC or stomas crossing my mind.

As I come closer every day to my reversal surgery in December, I begin to wonder if I would be able to live with this bag for the rest of my life, and after some thought, I honestly believe I would be able to. UC has taught me over the years that I can overcome anything and the ostomy bag was just the latest thing I had to overcome. If I can go from fainting over a loose tooth to conquering a disease that once bullied me then I can overcome any challenges that may come my way. The once terrifying ostomy bag has become a cherished friend of mine who I will never forget even when it is gone. I cried when I had my first tooth removed. I may also cry when I have my ostomy removed, but I think these tears will fall for a completely different reason.

Colonel Justin Blum with Introduction by retired Navy Veteran Douglas R. Stocks

I’ve known Colonel Justin Blum for almost ten years and have learned much of his story over those years. For UOAA’s observance of Veterans Day, I asked Justin to share his story in greater depth. It is typical for us to remember our Veterans as heroes, but we don’t think or even imagine that they also may have been through a life-altering illness or traumatic event resulting in an ostomy. My wife Joanna (an ostomate) and I had the opportunity to spend an evening with Justin and his wife Leah after the Durham Run for Resilience 5K this past October. I was reminded that evening of the hero that Justin truly is, and felt it was time that others knew the story of this humble and well-respected man.

In 1993, when Justin was a Major on active duty in the US Army, he underwent surgery for an ileostomy due to ulcerative colitis (UC) which had progressed to colon cancer. Justin’s ostomy did not slow him down and he became one of the most respected officers in the state of South Carolina and the only member of the Army Junior Reserve Officer Training Corps (JROTC) cadre with an ostomy.  Justin has had a highly successful career and life of public service. Justin has faced the gamut of living with a chronic illness, to receiving a devastating diagnosis, to ostomy surgery, to survival and finally triumph.

Here is his story:

In the Fall of 1971, I was a freshman at Morris Harvey College in Charleston, West Virginia. I was feeling the stress of being away from home for the first time in my life and of getting adjusted to college life.  I began noticing blood in the toilet after every bowel movement. I told my parents, who took me to a gastroenterologist during my Thanksgiving vacation at home. The gastroenterologist performed a sigmoidoscopy and determined that I had proctitis, an inflammation of the rectum and anus.

I transferred to Rider University in Trenton, NJ, for my second freshman semester to be closer to home, a decision made easier by the fact that Rider had an excellent ROTC program. I suffered with the proctitis and colitis for the next four years with only a prescription for the anti-inflammatory drug Azulfidine to combat the disease. In June of 1975, I underwent my physical exam at Fort Dix, NJ, to go into active duty in the Army. In the course of the physical, the Army doctor performed a rectal exam, and asked, “Do you know what you have?”  I acknowledged that I had colitis. In one of those strange twists of fate, my passion for serving the Army outweighed the colitis so the examining doctor wrote “Fit for Duty”.

For the next twenty years I hid my ulcerative colitis from the Army.  On days that I had attacks, I would explain that I was feeling bad due to having had too much scotch the night before.  Stationed in South Korea in 1976/1977, all too often upon returning to the camp motor pool after patrolling along the DMZ, I would have such severe diarrhea that I could not make it to the latrine and instead would jump into the nearest garbage bin since it was the closest “facility” I could find. I spent the next 13 years seeing civilian gastroenterologists for the colitis and who continued to prescribe Azulfidine. Finally, in 1990, my colitis was so bad I sought help at Eisenhower Army Hospital at Fort Gordan, Georgia where I began seeing Major Armstrong, a gastroenterologist, who informed me that due to my heath condition, resulting from severe flare-ups of UC, he strongly recommended surgery for an ileostomy.  My reaction, not unusual I am sure for people receiving this news, was an immediate, “No! Unless I have one foot in the grave with my back against the wall, I refuse to have this surgery resulting in my living with an ostomy bag!” This was twenty years after my first diagnosis of UC in November 1971. However, just a few years later after a colonoscopy, Major Armstrong told me that I needed ostomy surgery as soon as possible.

On February 28, 1993, I had surgery to remove my entire colon due to UC, which had advanced to colon cancer, and I was left with an ileostomy. As was not uncommon in those days, and even sadly still happens today, I had only one session with the ostomy nurse on how to manage my ostomy.  The day after surgery, I developed a leak in my appliance and called for the nurse, but no one responded.  I looked at myself in the latrine mirror with my ostomy bag hanging down, and I thought I looked like the Elephant Man.  After 10 days I was discharged but did not have access to an ostomy nurse or assistance of any kind except for follow up appointments three hours away at Eisenhower Hospital. I wanted to continue to serve on active duty, so I put my mind toward getting in the best physical condition possible. I started walking 9 miles a day, passed my physical fitness test, and was able to stay on active duty. In 1995 I was promoted to Lieutenant Colonel and in 1996 retired from active duty and transferred to reserve status, continuing to work for the US Army as a high school JROTC Instructor.

Life as an ostomate was fine except that I was experiencing pain from irritation of the skin around my stoma and I did not know of any ostomy nurses in the local hospitals and I didn’t know where to turn for help except for the still fledgling Internet of 1996. I was able to find a Crohn’s/Colitis chatroom on AOL (America Online). In that chatroom I was able to talk with numerous people who had either an ileostomy or a colostomy. On one occasion, an experienced ostomate was able to talk me through the steps to alleviate an intestinal blockage saving me a trip to the emergency room.  I was able to find an ostomy support group at the local hospital, but because they met at 10:00 AM and I was working an hour away, I was unable to attend their meetings. Despite all I learned from online resources I was still plagued with skin irritation around my stoma site which continued for the next 10 plus years.

Life took a turn for the better when in 2010, I received a letter from the nurse who ran the local ostomy support group, which talked about (the now former) Great Comebacks Program; a national honor program started by ostomate and former point kicker for the San Diego Chargers, Rolf Benirschke. This program recognized people who had lived an exemplary and inspiring life while living with an ostomy.  In 2011 I was the recipient of the Tony Snow Public Service Award, a subgroup of the Great Comebacks Program which emphasizes those in uniform living with an ostomy.

However, it was not the award that changed things for me, it was my ongoing communication with the ostomy nurses that I met through this program who eventually solved the problem of the skin irritation and pain that I had struggled with for so many years.

I have accomplished more in my life as an ostomate as a result of the care I have been able to obtain since my story was brought to the national level. If not for my quality of life-improving dramatically as a result of this assistance, these accomplishments would not have become a reality.  I owe so much to three WOC nurses: Donna Sellers, Joanna Burgess, and Joy Hooper. I met them through the Great Comebacks program, and they have always offered their help readily.  I have now been free from pain for the past nine years.

There are many who do not have the same easy access to professionals that I have had. I am very fortunate! That is why I believe everyone should seek out or become involved with a community of ostomates either through an online support group or hospital-based support group if possible. All ostomates should help other ostomates achieve the quality of life made possible by their life-saving surgery. Having UC and then colon cancer at age 40 meant years of pain and discomfort in my life. Ostomy surgery gave me a new life. Before I retired from teaching, I used my experience with my ostomy to motivate my JROTC cadets, inspiring them to never give up on anything and reminding them they can accomplish anything they set their mind to.  I no longer see myself as the Elephant Man, but as a man with a beautiful wife, supportive children and two amazing grandchildren.  Life is good!

The UOAA thanks you for your service Colonel Justin Blum and honors your accomplishments!

  • 1995 – Promoted to Lieutenant Colonel
  • 1996 – Retired from active duty; continued to work for the US Army as an Army JROTC instructor in the United States Army Cadet Command.
  • 2003-Named the United States Army JROTC Senior Instructor of the year
  • 2009 – Promoted to Colonel, in the South Carolina State Guard
  • 2010- Named Volunteer of the Year for the State of South Carolina
  • 2011- Named US Army JROTC Senior Instructor of the Year for the second time.
  • 2011 – Named the Tony Snow recipient for Public Service
  • 2019 – Lawson R. McElroy Award for Engaged Learning