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,
Wednesday, November 30, 2016
Updated: Tuesday, November 29, 2016
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Did you know that as a WOCN member you can easily and quickly network with other Society members through the Member Message Center on wocn.org? The member message center is as simple as emailing a friend or colleague. This blog will show you how to access and use the member message center. If you have any questions, please email us at firstname.lastname@example.org.
Accessing the Message Center
Step 1: Sign into your Member Center profile on the wocn.org homepage.
Step 2: Once you are signed in to your member center profile, click on “Messages” listed under “MY PROFILE.” This will take you to the message center.
Note: If you have new, unread messages in your inbox you will see the word “NEW” next to “Messages.”
Message Center Preferences
Step 1: Go to “Quick Jump To…” and select “My Preferences.”
Step 2: Once you are on the My Preferences page, you can customize the notifications you wish to receive in your message center inbox.
Viewing and Sending Messages
Once you are in the message center, you can view messages in your inbox, view your sent messages, message a member or create a new folder. You will be able to see right away if you have any unread messages waiting in your inbox.
Step 1: To view your inbox or sent messages, simply click on either link under “Message Center.”
Step 2: To message a member, simply clink on the link under “Message Options.” After you click “Message a Member” you will be prompted to search the name of the person you wish to contact.
Note: You can also do a filtered search by group (i.e. Committees, Regions & Affiliates, Volunteers, etc.), country or by location (City, State or Zip Code.)
Step 3: Once you search a member’s name, a list of matching results will appear along with a map showing that person’s location.
Step 4: Hover over the name of the member you wish to contact, and click on “Message Me” to begin networking similar to email!
Step 5: After you click “Message Me” you will be prompted to write a new message. Simply type your message then press the orange “Send Now” button when you are finished.
Note: You will receive a notification if you message was sent or unable to send.
You are now ready to send and receive messages through the member message center! We hope you find this feature to be a useful, easy networking tool. If you have any questions, please email us at email@example.com.
Posted By Jenna A. Bertini,
Friday, October 14, 2016
Updated: Wednesday, October 12, 2016
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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, Lois Fink.
Courage Takes Guts
After months of research and writing, my memoir to inspire and support those struggling with Crohn's disease and/or facing ostomy surgery is finally complete!
"You have Crohn's disease," the gastroenterologist pronounced, changing my life in one breath. I remember hearing those four paralyzing words said to me fifty years ago as if it was yesterday. I was seventeen and had been telling my parents and numerous doctors for nearly two years that something was terribly wrong, but no one listened.
I remember angrily asking my dad, "Why me?" He replied, "I don't know. Perhaps later in life you will meet someone and because of what you are going through now, you'll know what to say and how to help." It would take years before I fully understood the power of his words.
For the next nineteen years, Crohn's disease relentlessly scarred and narrowed my colon, leaving a trail of bowel incontinence, pain, fatigue, embarrassment and shame. Thirty years ago, ostomy surgery gave me back everything the disease had taken away: an active and rewarding life.
I wrote Courage Takes Guts as a way to share my battle with Crohn's disease, to illustrate how full and active my life is as a result of ostomy surgery and to share my father's words. This book is for patients, family members, friends, caregivers, as well as gastroenterologists, colorectal surgeons and certified wound, ostomy and continence (WOC) nurses. No one has to suffer in silence because of a bowel disease or ostomy surgery. I want to share the life lessons I learned after losing my colon, and share how Crohn's disease and ostomy surgery offered me opportunities for personal growth when I chose to change how I viewed my situation.
This memoir has been self-funded to this point. Self-publishing is exciting but not easy. Writing, illustrating and distributing isn't accomplished in a vacuum, but rather with a team approach. A strong game plan is in place. I just need the financial “chutzpah” to accomplish everything. It will be warp speed ahead (I’m a Trekkie) to the next part of this gutsy journey - getting Courage Takes Guts published, seeing it in print, seeing it on Amazon and seeing it in the hands of those struggling with Crohn's disease and/or ostomy surgery, as well as their friends, family members, caregivers, nurses and doctors.
If you wish to help me honor my father’s words of wisdom, while inspiring others, click here. Your support will help me to continue the editing and proofing process, work with an amazing graphic designer, print at least 100 books and properly publicize the memoir. If you wish to contact me, please do so via email at firstname.lastname@example.org.
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Posted By Jenna A. Bertini,
Wednesday, September 21, 2016
Updated: Wednesday, September 21, 2016
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Society member Ann-Marie Waechter, BSN, RN, CWCN, MS-BC, is a wound care nurse and volunteer with the global charity Mercy Ships on board the world’s largest private hospital ship, the Africa Mercy. Ann-Marie is writing a series of blogs for the Society and its members to share her experiences on the Africa Mercy and to inspire other nurses. You can read Ann-Marie's first story below.
If you have a story you would like to share, please email us at email@example.com.
A New Beginning
After a full life of school, study, marriage and raising children, my childhood dream is realized. My husband, Tom, took early retirement two years ago and asked, “How about looking into volunteering for Mercy Ships?” From the age of 10, after reading about the hospital ship, SS Hope, I knew I wanted to be a nurse and someday work on a hospital ship. Maybe because patience is not one of my virtues, I never imagined I would live so much life and see my dream realized at the age of 60! In the fall of 2014, after applying and waiting 18 months for a position to become available, Tom and I reported to Mercy Ships headquarters in Texas for our “Onboarding Training.” We spent five weeks in Texas and then our onboarding group headed for Madagascar for two weeks of required field training. There we began to learn the realities of living and working as a community.
Tom and Ann-Marie Waechter volunteer with Mercy Ships onboard the world’s largest private hospital ship, the Africa Mercy. ©Mercy Ships
When we were first contacted with the news that, finally, there were positions for both of us on the ship, we were asked if it mattered to us where the ship was going – it struck me as an odd question. However, for the first time ever, the Africa Mercy sat out in the water with nowhere to go. Originally scheduled to head for Benin, Ebola had broken out in West Africa, leaving the ship unable to fulfill its promise to the government of Benin to spend 10 months in the port of Cotonou. Although the Africa Mercy successfully completes thousands of specialized surgeries each year, we are not equipped to effectively address infectious diseases such as Ebola.
After a lot of prayers, miracles opened doors and in what would normally take six to 18 months to sign agreements and protocols with a receiving government, Mercy Ships was able to do in five days. The way was open for the Africa Mercy to be welcomed into Toamasina, Madagascar.
After an amazing 18 months and two field services in Madagascar, we have finally arrived in Benin to fulfill our promise from two years ago. Back in West Africa, where the work of the Africa Mercy has been focused over the years, the crew that has been here before were beaming with excitement as we sailed into the port and capital city of Cotonou – our new home for the next 10 months.
The Africa Mercy sails into Cotonou, Benin where the Mercy Ships volunteer crew will provide free surgeries, healthcare training and other services for the next 10 months. ©Mercy Ships / credit: Katie Keegan
Our advance team, already here for three months, and an African band were here to welcome us. Before the end of the day, we will have been welcomed by the First Lady of the country and top officials in a formal ceremony.
And so we begin again… the Africa Mercy, the flagship of Mercy Ships, following the “2,000 year old model of Jesus, to provide hope and healing to the world’s forgotten poor” will stay in Benin for the next 10 months providing specialized surgery to the poorest of the poor, those who would have no other access to the surgical care we provide. The Lancet Commission on Global Surgery published a report in 2015 stating that there are four times as many deaths worldwide resulting from lack of access to safe, affordable surgical and anesthetic care than from malaria, TB and HIV combined. Mercy Ships works to fill that gap.
The advance team for Mercy Ships worked in Benin prior to the ship’s arrival to prepare arrangements for the Africa Mercy’s field service. They greet the floating hospital in matching African dress as the vessel sails in to dock in Cotonou. ©Mercy Ships / credit: Katie Keegan
We docked on a Thursday and by Friday there was a flurry of activity on and off the ship. The five hospital wards, along with the OR complex, with everything secured for sail, have to be unpacked, cleaned, sterilized and setup. The nurses that were already onboard cleaned everything twice with Tristel – and I mean everything. Every wall, ceiling, floor, cabinet, counter, piece of equipment, cord, mattress, bed frame, bin, trash receptacle, bio-waste container and more, was deep cleaned by the nurses who will use these wards to care for the approximate 1,700 patients who will receive surgery on this field service. The pharmacy was opened, cleaned and shipping containers organized with the medications for the field service, for patients and crew alike, along with the lab and radiology.
Our Beninoise crew member, Bio-med technician Emmanuel Essah, presents the Benin Flag to the First Lady of Benin who came to meet the Mercy Ship upon arrival in her country. ©Mercy Ships / credit : Tim Baskerville
A team of people from the United States helped set up all the facilities off the ship, which includes huge tents on the dock housing our admissions, rehab, ponseti and screening teams, as well as our infant feeding program and outpatient clinic. The outpatient clinic is where all our wound care is done and it will by my “home” until June. In town, we have facilities loaned to us by the government for the duration of our stay, which will house the dental clinic, eye clinic and the Hospital Outpatient Extension (H.O.P.E.) Center.
The flurry of activities included the beginning of screening. For the next three weeks, our team of nurses will pre-screen as many people as they can, who line up outside the screening center to see if their condition fits the criteria of the surgeons who will soon arrive. It is a difficult and emotionally challenging job; possibly the most difficult on the ship. We have a limited number of surgical slots for each surgical specialty: plastics, orthopedics, maxillofacial, general and women’s health.
Although many people come with surgical conditions, much more come with non-surgical conditions hoping for help. Some are palliative and are followed by our Palliative Care team. Others need surgeries that we are unable to provide. Of the several thousand people waiting in line this first week of screening, 355 were given appointments to be seen by the surgeons. Every person we have to turn away is gut-wrenching. The screening team, along with the entire Africa Mercy community, reminds each other of the lives we have seen changed from the surgeries we are able to provide. The joy we see on the faces of those we are able to serve make it all worthwhile.
The dockside tents serve as an extension of the Mercy Ship and will house the outpatient clinic where I will work for the next 10 months. ©Mercy Ships
During the first field service in Madagascar, I served as the Crew Nurse in the Crew Clinic, sharing the same hallway as the hospital. It was a wonderful opportunity to serve and get to know the approximate 400 crew onboard, but my heart longed to work with the patients I saw daily walking the halls, experiencing the miraculous surgeries done by the surgeons who volunteer their time here.
Thanks to Emory University’s Long Distance Learning Program, and a generous donor who provided enough bandwidth so we could download video on the ship, I was able to begin their Wound Care Program in January 2015. In June when the ship left Madagascar for its two month shipyard period, I headed to Atlanta to do Emory’s Wound Care “Bridge Week.” I am so grateful that the staff at Emory designed a program that made it possible for me to fulfill my second dream – becoming a wound care nurse. Less than a week before we had to return to the ship, I took and passed my certification exam. I became a CWCN!
During our second field service in Madagascar, I transferred to the outpatient clinic and I love it. It’s the best nursing job I’ve ever had! After all this time, I feel as if I’ve found my place in nursing. Our first surgeries in Benin begin in September and the outpatient clinic will open soon after. Benin is a new beginning – who will we see, what will we see that’s never been seen before, what patients will we come to love, what will cause us struggles, what will bring us joy, what miracles will we see? For now they are only questions, but the entire Africa Mercy crew works with anticipation for the answers soon to come.
For more information about Mercy Ships please go to www.mercyships.org.
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 firstname.lastname@example.org.
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.