Posted By Jenna A. Bertini,
Wednesday, May 16, 2018
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Ostomy and Continent Diversion Patient Bill of Rights
Act Today and Be a Voice for Change
Joanna J. Burgess BSN, RN, CWOCN
Management Board of Director for the UOAA and Advocacy Chair
Today, as you read this, hundreds of ostomy patients across the country are struggling to find adequate help. There are not enough ostomy nurses and not enough outpatient ostomy services to meet the demand of this underserved population, which to date is estimated to be 725,000 to 1,000,000. This is my story, and this is how you can become involved and raise your voice to make a difference in the lives of this vulnerable population.
The new year had just turned in January of 1966, when my family was getting ready to bring me home from Boston Children’s Hospital. I was just three years old and had a new urostomy after a cystectomy for rhabdomyosarcoma of the bladder. My father remembers the blatant fear in the discharge nurse’s face as she handed my father a small brown paper bag of ostomy supplies and fumbled through them not knowing how to use them herself. It was a four-hour drive home from the hospital. My father described his feelings, mixed anxiety with fear and determination, as he stopped at a gas station on the way home to rummage through the supplies until he found a phone number--which happened to be for the company Torbot. The owner of the company explained that he himself had an ostomy and would show my father how to use the supplies. We made a detour to Rhode Island, met with Torbot and my father had his first and only lesson in caring for my ostomy. Over the years, I learned how to master what my father had mastered; putting a seven-piece pouching system together with thick elastic bands and ultimately gluing it to my body. My father, at age 86, is still haunted by how hard that pouching system was. When I gave my first lecture as a new WOC nurse to nurses caring for ostomy patients, my father had me vow that I would tell this story and help nurses to never be afraid to care for someone with an ostomy.
I was honored to be elected to the United Ostomy Associations of America (UOAA) Management Board of Directors in July of 2015, and truly felt like I was called to Chair their newly formed advocacy committee. I knew that I had struggled growing up, feeling alone and not knowing anyone to turn to for assistance; not only for the physical but emotional challenges I faced as well. Joining UOAA helped me to see more clearly that despite our modern era of ostomy care, including well-made products and ostomy nursing established as a profession--now celebrating 50 years, patients continue to struggle. In 2017, the UOAA office received over 1,300 calls from people needing assistance. Calls ranged from seeking support on how to find help for ostomy related problems to questions concerning insurance issues.
As a UOAA board member, Great Comebacks Award recipient and WOC nurse working both in acute care and outpatient ostomy care, I have had the opportunity to speak with hundreds of patients across the country living the ostomy experience. Most patients will experience stoma or peristomal skin problems ranging from minor to severe. All patients will experience the emotional impact of the ostomy; from simple trepidation as they adapt to their new life to fear, anxiety and depression. If you are an ostomy nurse, I believe it is your obligation to know what these patients face once they leave your care. These are the experiences that drove me into the six-year pursuit of starting an outpatient ostomy clinic affiliated with my acute care center. Not an easy task, but I had the support from my supervisor and administration and we opened the clinic to the community. In my small, one-day-a-week clinic, it is not uncommon for someone to arrive with a towel wrapped around their stoma due to the inability to keep a pouching system on; it is not uncommon for someone to arrive in tears; it is not uncommon for a loved one to wait in the waiting room because they “just can’t look.” But what isn’t uncommon enough is hearing the words, “death would have been better than this.” If this is happening in my small community – what is happening in yours?
It is crucial for you to understand that healthcare delivery for people living with an ostomy or continent diversion across the United States is not equal. There are geographic areas well served by nurses like you who have been trained in ostomy care, but there are also many areas where this is not the case. Additionally, ostomy care is not equal from facility to facility. People may receive care that meets quality standards in one facility, but once transferred to another facility receive little or no care. We are aware of the lack of ostomy nurses in home and outpatient ostomy care. It is a lot to digest and, when faced with a problem so significant, it’s natural to want to turn away and find a less daunting problem to attack. I was spinning in the magnitude of this problem, which I feel is a crisis in this country, when at a UOAA Board meeting; Advocacy Manager Jeanine Gleba suggested that the Advocacy Committee’s top priority should be updating the Ostomy and Continent Diversion Patient Bill of Rights. The Bill of Rights was first created by the former UOA in 1972. My first reaction was, ‘Why? We don’t have enough ostomy nurses to provide these services. Honestly, I was perplexed by the suggestion. We don’t even have enough ostomy nurses to provide fundamental care to the entire ostomate population. How could we possibly provide the full service set forth in the Bill of Rights? However, after pondering the idea for several weeks, my advocacy light finally lit up and I realized that restructuring these patient rights could actually be the force for the needed changes. The committee came together and reached a consensus to move forward with Jeanine’s suggestion to revise the Ostomy and Continent Diversion Patient Bill of Rights. Over the next three months or so, the revised Bill of Rights was developed and finally republished in the Summer of 2017.
The newly revised UOAA Ostomy and Continent Diversion Patient Bill of Rights (PBOR) provides details of the care people with an ostomy should expect to receive initially and over their lifetime. It calls for healthcare professionals who provide care to people with ostomies to be educated in the specialty and to observe established standards of care. It is meant to be used as a tool for patients and the medical community. UOAA believes this could be a powerful tool to guide patients and families to be active partners in their care and to ensure the best outcomes. It is also a powerful tool meant to inspire ostomy nurses to be advocates and to inspire excellence in themselves, their teams, and their organizations. Our role as specialty nurses is multifaceted,holistic and must include advocacy. We must be a voice on behalf of our patients to ensure they are receiving optimal care and to encourage them to be self-advocates. Your voice matters in creating educational tools for patients, in creating outpatient ostomy clinics and in ensuring this underserved population is recognized and cared for. UOAA invites you to review the newly revised Ostomy and Continent Diversion Patient Bill of Rights (PBOR) and its accompanying tool, Practices for Ostomy Nurses to Utilize and Support Ostomy and Continent Diversion Patient Bill of Rights.
I am pleased to say that the response to the new PBOR and accompanying tools, by healthcare organizations, professionals, industry and the ostomy population across the country, has been enthusiastic. The clamor for more access to care is louder and louder. The time is right to effect change. I believe that in this new era of blogs, newsletters, discussion boards, and social – social media,our profession has the best opportunity in its 50-year history to create change. My father would be pleased to know that the future looks hopeful. There are now many nurses who are not afraid to care for someone with an ostomy and there are advocates creating better lives for ostomy patients. 50 years ago, our profession started as enterostomal nurses... let's embrace our origins. Let’s work to increase access to care. Let’s find a way to get an ostomy clinic in every community. Switch your advocacy light on; together we can make it happen.
Bill of Rights
Posted By Jenna A. Bertini,
Friday, December 9, 2016
Updated: Friday, December 9, 2016
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How my journey as a double ostomate began:
I grew up in a loving family with five siblings. At the age of three, along with being a twin, I was developing my personality while enjoying time with my siblings, getting ready to start pre-school and feeling filled with joy. I had no worries in the world. I never imagined that one day playing in the backyard my clothing would start to fill with blood.
My parents rushed me to the University Of Maryland Medical Center (UMMC) in Baltimore. After several days of testing, the diagnosis was a rare form of vaginal cancer called Rhabdomyosarcoma. After receiving advice from medical physicians, my parents decided to transfer me to a hospital that specialized in this rare type of cancer.
My childhood, and most of my adolescent years, was spent at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York. Along with chemotherapy, radiation and too many surgeries to count, I was faced with having two ostomies (a colostomy & urostomy) for rest of my life. The doctors, surgeons, social workers, medical staff and ostomy nurses made my life as normal as possible. The care they showed was beyond their medical titles and duties. My family is ever so grateful to everyone at MSKCC for their care.
After the age of 12, I was able to do my follow up visit back in Baltimore under the care of Dr. Fromm at UMMC. Since 1995, I have been under the care of Dr. Faud Abbas at the Sinai Hospital of Baltimore. I look forward to my doctor visits. When you find a doctor like Dr. Abbas, you feel comfortable knowing your health is in good hands.
Since having two ostomies from the age of three, my life has proven to be a journey of unexpected challenges. While others appeared to be living a “normal life,” I struggled with self-pity, unhappiness, depression and low self-esteem. I found it hard, embarrassing and painful to be considered “different.”
How I dealt with what life had dealt me:
My parents taught me to love myself and to know that my medical circumstance does not dictate my future. Their faith in God helped me to know I was going to be alright.
The support from my family and friends made my life feel normal again. I contacted my local United Ostomy Associations of America, Inc. (UOAA) chapter for support. I discussed different ostomy products to try with ostomy nurses. If a product worked for me, I stuck with that. I dealt with leaks and blowouts by keeping extra clothes and products in my car, at work and at friends’ houses. I still do not dwell on leaks; I clean up and keep moving. When you accept being an ostomate, others will. It is what it is and no one is to blame. If you lived your life before you had an ostomy there is no reason why you cannot live your life with one. Love the essence of who you are.
What helped me to accept my ostomies:
The mantra LIVE FOR TODAY - don’t dwell on what happened yesterday and enjoy the moment is what helped me to learn that I am more than my ostomies.
Advice for my fellow ostomates:
I encourage other ostomates to get out and try activities and hobbies such as sports, reading, having fun, laughing, attending support groups, leaning on family for support and seeking out to the WOCN Society for additional support. And do not let your ostomy pouches stop your fashion style! Try different styles of clothing to see what makes you feel confident - the best fashion style we have is our inner beauty.
I am blessed to have my desires, passions and dreams come true. I am a double ostomate and have been a fashion model for over 17 years. Through my career, I am helping cancer survivors, encouraging ostomy patients, guiding aspiring fashion models and inspiring those suffering with low self-esteem. Just by looking at my outer appearance, no one could ever tell I live with these medical adversities and what I deal with 24 hours/7 days a week.
We all have the ability to make a difference, to change lives, to be a role model and be all that we can be as an ostomate.
I know am beautiful from the inside out, despite my life being a journey of unexpected challenges. I am trying to change the lives of others by telling my story through my book, Pretty Girl Blues: An Autobiography, my intimate journey of being a survivor. The adversities and obstacles that I overcame allow me to encourage, inspire and motivate others to “live their life on purpose with a purpose for a purpose.”
About the Author:
Jearlean Alston-Taylor was born and raised in Southwest Baltimore, MD. She grew up in a happy home with five siblings, including her twin sister. At the age of three, Taylor was diagnosed with a rare form of cancer. Doctors thought she would not live to see four. Today, Taylor has beaten all odds and uses writing and modeling as an outlet and a way to connect with other ostomates. Taylor is the CEO of J & Company Christian Modeling and Osto Beauties.
Posted By Jenna A. Bertini,
Tuesday, September 6, 2016
Updated: Tuesday, September 6, 2016
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Society member Joanna Burgess, BSN, RN, CWOCN, shared her experience about growing up as an ostomate and her contribution to the members-only document, Pediatric Ostomy Complications: Best Practice for Clinicians.
You can read Joanna's story below, and if you have a story you would like to share please email us at email@example.com.
Almost a decade ago, as a wound, ostomy and continence (WOC) student at Emory University, I was mentored by Michelle Rice, MSN, RN, CWOCN, a clinician at Duke University Medical Center. I remember being intrigued by the unique needs of the pediatric population, in particular, the neonates; some of which had multiple stomas from necrotizing enterocolitis. Michelle’s unique knowledge on how to handle the delicate neonate population came from years of experience and the dedication to assisting new parents with the physical and emotional needs of caring for an infant or child with an ostomy. Therefore, it was an honor to work with Michelle and other well respected wound, ostomy and continence nurses who have specialties in pediatric ostomy care to create the WOCN® Society’s members-only document, Pediatric Ostomy Complications: Best Practice for Clinicians.
Working with the WOCN Society’s Pediatric Ostomy Task Force of the Ostomy Committee and collaborating on the Pediatric Ostomy Complications: Best Practice for Clinicians was a personal experience for me and an undertaking that I dedicate to my father, who was the primary caregiver of my ostomy in my growing years. In Boston 1965, when I was just three years old, something that was suspected to be a simple urinary tract infection quickly turned into a diagnosis of rhabdomyosarcoma of the bladder. My original surgical treatment was a cystectomy and creation of ureterosigmoidostomy, generically known as a “wet bladder.” However, due to multiple kidney infections I experienced from the procedure, the creation of an ileal conduit quickly followed. All of this occurred during a period of time when there was no ostomy nurse at Boston Children’s Hospital to teach and support my family, and there was no access to online resources.
My father’s recollection of the experience was that the nurses seemed frightened to care for me. He remembers being handed a brown paper bag containing a few ostomy supplies at the time of my hospital discharge. He recalls returning home and fumbling through the packaging of an unassembled seven-piece pouching system. Through trial and error, he eventually mastered how to assemble the pouch, but he couldn’t figure how to keep it on me! To his relief, the packaging contained the phone number for the ostomy supply company Torbot, located in Rhode Island. My father and I quickly made the four hour trip from Boston to Rhode Island and met with the founder of Torbot, an ostomate, who showed my father how to care for my urostomy. My father was so overwhelmed with finding a confidant in the ostomy world, he even bought me a lifetime supply of products “just in case they ever stopped making them.”
Growing up with an ostomy became a part of my life, it seemed normal and was all I ever really knew. The only problem I can remember was an occasional itchy skin condition, sometimes causing me to scratch to the point of bleeding. This bleeding incident happened once in the first grade, and I remember my teacher was terrified as she scooped me up in her arms and ran down the hall to the school nurse. There was no doubt the problem with my skin came from the layers of bonding cement that was used to keep my ostomy pouch in place. The only remedy then was to apply karaya powder to the skin, which stung and was painful. There were also metal clips on my ostomy belt that would dig into my sides, but I learned to live with the fear that without the belt my pouch would leak or fall off. Despite these few irritations, I don’t remember feeling limited because of my ostomy. I continued to do the things I loved, such as swimming and dancing.
I had close friends who knew about the secret that I wore under my clothes. I remember my mother would coach me on how to discreetly change my clothes at slumber parties so no one would notice my pouch. This skill served me well in my later years of junior high and high school gym classes, where I was expected to change clothes in front of other young women in the locker room. I admit, I did feel very alone. I remember wishing and longing to know someone like me – someone else who wore an ostomy pouch. Since childhood, I have connected with several adults who also grew up with an ostomy and were treated during my era. That feeling of being alone would have been greatly alleviated, for both my family and I, had us ostomates known how to connect with one another.
Thank goodness we now know today how the times would change; how ostomy nursing would become a career that would involve not only care of the patient’s ostomy, but ongoing education in building confidence and independence with self-care and emotional support. We now know that products would go through many changes and improvements and that product development would be an ongoing process by dedicated companies and researchers.
Today, we have much more knowledge concerning the care of the pediatric patient and have many more products available to ease the challenges that face this population. As an ostomy patient and ostomy nurse, I currently share my story across the country. I am continually reminded of the need to reach out to families who have children living with an ostomy and connect them to the resources they need to aid the emotional and physical aspects of ostomy care. I am also reminded that we need more ostomy nurses caring for the pediatric population. These families sometimes search for weeks, months or even years looking for help.
In creating the Pediatric Ostomy Complications: Best Practice for Clinicians document, it is the hope of the WOCN Society Pediatric Ostomy Task Force that these best practices will give ostomy nurses, and any nurse who works with pediatric ostomies, the confidence needed to take on the challenges the pediatric population faces, from stoma to peristomal complications. When nurses feel empowered, parents will ultimately feel empowered to take on the responsibility of their child’s care with greater ease. The WOCN Society looks forward to hearing your comments about the Pediatric Ostomy Complications: Best Practice for Clinicians document, and encourage you to keep track of your own personal stories and suggestions as the WOC community continues to strive for success for the pediatric ostomate.
Joanna Burgess, BSN, RN, CWOCN is a full scope practicing Wound, Ostomy and Continence nurse at WakeMed Health and Hospitals acute care center in North Carolina. Joanna’s passion for ostomy care stems from her 50-year journey as an ostomate, after being diagnosed with bladder cancer at the age of three. Joanna’s contributions to the WOC practice include serving on the Wound, Ostomy and Continence Society™ (WOCN®) national Ostomy Committee for three years and contributed to the Wound Care Core Curriculum Textbook, in which she wrote on the topic of lymphedema. Joanna is the 2011 Great Comebacks® award recipient and has shared her story on a state, national and international level. She is a board member for the United Ostomy Associations of America, Inc. and she is the 2016 South East Regional WOC nurse of the year.