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,
Monday, February 13, 2017
Updated: Friday, February 10, 2017
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Nursing students considering their many options following graduation were introduced to wound, ostomy and continence nursing at the National Student Nurses' Association (NSNA) 34th Annual Mid-Year Planning Conference. More than 600 junior and senior nursing students from across the country attended the conference in Kansas City, Missouri, in November 2016.
WOCN Society member Carolyn Crumley, DNP, RN, ACNS-BC, CWOCN, presented a concurrent student workshop, “Wound, Ostomy & Continence Nursing – WOC Nurses: Who we are, what we do,” which provided an overview of the impact that the WOC specialty has on patient outcomes and the various opportunities for board-certified WOC nurses. Carolyn also participated in a nursing specialty showcase panel presentation, with many students expressing an interest and requesting additional information.
Interestingly enough, in an unusual coincidence, the panel participants who represented eight different nursing specialties included a classmate from each of Carolyn’s nursing education programs – BSN, MSN and DNP!
Read Carolyn’s thoughts on her informative presentation and how she hoped it impacted the students:
1. What is one piece of information you hope attendees took away and found helpful from your student workshop, "WOC Nurses: Who we are, what we do?"
I hope that the nursing students who attended the session gained a better understanding of the WOC specialty nursing practice – whether they were interested in pursuing WOC specialty practice as their career path or in working with WOC nurses within their organization in other capacities. For those attendees who were interested in pursuing the WOC specialty practice, I hope that they found the discussion of the educational and certification options helpful. Finally, I hope that my passion for working with wound, ostomy and continence patients inspired them to seek out an area of nursing in which they feel the same dedication and personal satisfaction.
2. What piece of advice did you provide the students during the Nursing Specialty showcase panel presentation?
I stressed to the students that if you are not experiencing personal fulfillment in a nursing position that you are working in, explore the multitude of other opportunities. And it is not all about how much money that you make!
3. What did you like most about presenting to nursing students at the NSNA conference?
It was inspiring to see a new generation of nurses involved with a professional organization, even prior to graduation! I heard several other presenters who reinforced the benefits of continuing their involvement with the various nursing and specialty organizations.
Posted By Jenna A. Bertini,
Thursday, January 5, 2017
Updated: Friday, January 6, 2017
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The Society does not endorse or support products or services. This is a guest blog post written by ostomy patient and advocate, Dawnette Meredith.
If you have a story you would like to share, please email firstname.lastname@example.org.
Awesome Ollie the Ostomy Bear
This is me, a 50-year-old woman completely thrilled about a very expensive stuffed bunny from overseas. Ridiculous you say? Well, this is a very special bunny. It has an ostomy just like me! I underwent ostomy surgery in December of 2016 after battling severe colonic-inertia for 49 years, 9 months and 15 days. My bunny was a bright spot in my recovery. It was a daily reminder to smile and laugh at an otherwise less than ideal situation. For heaven’s sake, I’m a grown woman, but there I was showing off my stuffed bunny to family and friends! It somehow made it easier to talk about my illness and recent surgery.
This little bunny sparked in me a hope to pass along positivity to other ostomates, and a dream to give children in the United States who undergo ostomy surgery a teddy bear with an ostomy. I designed a Teddy bear with a red button for a stoma and a removable Velcro ostomy pouch. Awesome Ollie the Ostomy Bear was born.
There’s no better place to start than in your own back yard. Rady Children’s Hospital, near my home in San Diego, which performs roughly 120 ostomy surgeries per year, was the perfect place to begin. I know from personal experience that ostomy nurses are essential to helping patients recover and cope after ostomy surgery. My husband and I sponsored eight Awesome Ollie Ostomy Bears and delivered them to the ostomy nurses at Rady Children’s Hospital. The ostomy nurses were given the joyful task of handing out the bears to their ostomy patients. The response was overwhelmingly positive, and soon Rady Children’s Hospital called for more bears! Soon, other children’s hospitals wanted to acquire the bears for their ostomy patients. I quickly needed to find a way to get bears sponsored in time for the holidays!
I approached my ostomy support group and its members with the possibility of sponsoring the bears for Rady Children’s Hospital. Within 20 minutes, over 30 bears were sponsored! Wow! I hurried to prepare the bears before Christmas-time. I like to think of myself as “The Ostomy Elf” busily working in my teddy bear workshop. In a flurry of fabric and thread, the bears were ready. The second batch of sponsored bears was joyfully delivered to Rady Children’s Hospital in December 2016.
It’s a new year and Awesome Ollie the Ostomy bear has BIG plans! The goal is to secure funding and provide free Awesome Ollie Ostomy Bears to children’s hospitals all across the United States.
If you or your organization would like to sponsor Awesome Ollie Ostomy Bears at a hospital in your area or purchase a bear for yourself, please contact me at Terrabusy@yahoo.com or 858-336-4418. Awesome Ollie sponsorship costs $20/per bear. Find Awesome Ostomy on Facebook to keep up on all the Ostomy Bear news.
Posted By Jenna A. Bertini,
Tuesday, December 20, 2016
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When I first got my ostomy, I felt very alone. I felt self-conscious of the smell and sound, and sometimes I longed for my old body. When I couldn’t take self-loathing anymore, I decided to make friends with my ostomy. I reached out. I inquired about support groups in my area and realized there are many people like me. I realized my ostomy is a beautiful thing and has enabled me to do all the things I’ve been able to accomplish over the years. It is my uniqueness.
These are 10 things I would have liked to tell myself when I first had an ostomy — 10 things I didn’t know but eventually learned, which I am so grateful for today:
1. What it was.
I had no idea what an ostomy was before I had one. But I have a confession: I didn’t realize exactly what it was until a year later! Coming out of multiple surgeries, I had so many bags and new anatomical surprises to think about that a little pink bulge on my belly seemed to be the least of my problems!
I’ve learned things in the past 10 years that have shocked, scared and relieved me, such as: You can’t actually feel your stoma — no nerve endings! I’ve had three ostomies and four ileostomies over the years. I didn’t realize how different they were. Once I learned about the differences and functions of each, I was better able to take care of them.
2. What my limits were.
When I saw that I’d have to live life with a bag stuck to my side, I assumed I’d be “fragile” for the rest of my life. But believe it or not, there are so many activities for ostomates out there! Swimming, karate, ballet, yoga — I’ve done everything I did before my ostomy and more.
3. There are so many strong ostomates.
I was privileged to be the Eastern regional recipient of the Great Comebacks award and meet five other amazing ostomates doing incredible things. There is a huge, supportive ostomy community, including celebrities! Did you know Great Comebacks was founded by a former NFL linebacker?
4. Ostomates excel at innovation and inventiveness.
It turned out I was able to do all the things I thought I couldn’t — but that didn’t mean it was easy. Some of the best things in life take hard work, and that makes you appreciate them even more. Let’s just say that plastic wrap, Pepto-Bismol, waterproof tape and wet suits have become good friends of mine. I’ve even made a creative workshop for ostomy patients and healthcare professionals. The “Renegades” music video by X Ambassadors features a blind man who says it best: “It’s not a matter of enjoying it more or less; it’s about enjoying it differently.”
5. How amazing my body is.
I have a new respect for my body and the way it can function now.
6. Judgment hurts, but fear hurts more.
Stay informed and know the facts. The more I actually understood how an ostomy worked, the more I realized how wonderful it was. After that, I took it as my responsibility to educate others.
Instead of wondering if I was being “judged” by others, I took it as a privilege to inform them.
7. Everything is connected.
Take care of your full self: emotional, spiritual, mental and physical.
If you’re stressed you might get physical side effects, such as being bloated or feeling pain and discomfort. Remember to take deep breaths in difficult times.
8. The people who love you, love you.
If you’re just getting comfortable with your ostomy, remember that your support system loves you for who you are. You are more than your ostomy.
Reach out to the ones you love when you feel alone, and never forget how loved you are.
9. Eat fresh.
You are what you eat, so eat whole and nourishing foods. Your ostomy will thank you, and so will you!
10. Life can go on.
Throughout these years, I’ve been strong, determined and willing to do whatever it took to stay alive. I’ve dealt with tubes, bags, poles, you name it. And if this ostomy is all that I’m left with after everything, then I am truly grateful. More than that, I thank my ostomy for enabling me to live life to the fullest, to my fullest. I call it my Harry Potter thunderbolt scar: a symbol of strength, courage, individuality and life.
There are a few things I didn’t know before my ostomy. But what I look forward to most is everything left to learn. Thank you, ostomy, for making the world a wide open door once again.
Follow my journey.
About the author:
Amy Oestreicher is a PTSD peer-to-peer specialist, artist, author, writer for Huffington Post, speaker for TEDx and RAINN, health advocate, survivor, award-winning actress and playwright who is sharing the lessons learned from trauma through her writing, mixed media art, performance and inspirational speaking.
As the creator of the Gutless & Grateful, a one-woman autobiographical musical, Amy has toured theaters nationwide, along with a program combining mental health advocacy, sexual assault awareness and Broadway Theatre for college campuses and international conferences. Her original, full-length drama, Imprints, premiered at the NYC Producer's Club in May 2016, exploring how trauma affects family as well as the individual.
To celebrate her own “beautiful detour,” Amy created the #LoveMyDetour social media campaign, to help others cope in the face of unexpected events. "Detourism" is the subject of her TEDx talk and upcoming book, My Beautiful Detour, available December 2017. As Eastern Regional Recipient of Convatec’s Great Comebacks Award, Amy has contributed to over 70 notable online and print publications, and her story has appeared on NBC's TODAY, CBS and Cosmopolitan, among others. She has devised workshops for conferences nationwide and presented at the 2016 Northeast Region WOCN Conference, and is the 2016 keynote speaker for the Hawaii Pacific Rim International Conference on Diversity and Disability. To learn about the art of navigating beautiful detours and to sign up for updates visit amyoes.com.
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.