Print Page | Contact Us | Sign In | Join
Wound, Ostomy and Continence Nurses Society Blog
Blog Home All Blogs
If you have a great topic that you would like to share with your colleagues, or if you are unsure of what you can write about, email Marketing Coordinator Jenna Bertini at jbertini@wocn.org and she will help get you started!

 

Search all posts for:   

 

Top tags: WOCN  woc nurse  nursing  ostomy  nurse  WOCN Society  nursing student  2015 conference  membership  nurses  ostomate  specialty  surgery  3M award  3M Award for excellence in skin safety  annual conference  clinical  conference  continence  education  NSNA  stoma  urostomy  WOC  WTA  WTA Program  2014 conference  advice  advocate  bsn 

Dealing With Life As A Double Ostomate

Posted By Jenna A. Bertini, Friday, December 9, 2016
Updated: Friday, December 9, 2016

taylor baby picture

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.

taylor surgery in hospital

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:

taylor ostomy awaress I Can shirtMy 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.

taylor woke up like thisWhat 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:

taylor fashion gold dressI 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.

taylor fashion black dress

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.

Tags:  cancer  chemotherapy  colostomy  double  fashion  inspire  journey  model  motivate  nurses  ostomate  ostomy  p  radiation  Rhabdomyosarcoma  specialized care  struggle  support  surgery  survivor  urostomy 

Share |
PermalinkComments (0)
 

Striving Toward Excellence with the Pediatric Ostomy Population: A Personal Journey

Posted By Jenna A. Bertini, Tuesday, September 6, 2016
Updated: Tuesday, September 6, 2016

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 share@wocn.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.

Tags:  bladder  bsn  cancer  care  caregiver  child  committee  complication  continence  curriculum  cwocn  document  msn  nurse  ostomate  ostomy  parent  pediatric  pouch  publication  rn  stoma  task force  teacher  textbook  urostomy  woc  WOCN Society  wound 

Share |
PermalinkComments (0)
 
Join Now Contact Us: info@wocn.org 888-224-WOCN(9626) Advertising

Copyright 2018 Wound, Ostomy and Continence Nurses Society™. All rights reserved.

The WOCN® Society is professionally managed by Association Headquarters, a charter accredited association management company.

The Wound, Ostomy and Continence Nurses Society is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center's Commission on Accreditation.

The Wound, Ostomy and Continence Nurses Society is approved by the California Board of Registered Nursing, Provider Number CEP 15115.

PLEASE BE ADVISED: The names and contact information for all individuals listed on this site is privileged, confidential information and intended for specific purposes. No one (individual or company) may use any contact information on the WOCN Society website to contact, to distribute information to, or solicit anyone for any reason other than the intended purpose for which the name and contact information is available. Click here to view our detailed Privacy Policy.