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10 Things I Didn't Know Before I Had My Ostomy

Posted By Jenna A. Bertini, Tuesday, December 20, 2016

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 selfemotional, 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 OestreicherAmy 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.

Tags:  advice  advocate  disability  educate  Great Comebacks  ileostomy  inform  learn  life lessons  ostomate  ostomy  resilient  stoma  strong  support  surgery  tips 

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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 

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Guest Blogger: OstomyConnection

Posted By Lauren Schoener-Gaynor, Tuesday, July 7, 2015

Christine Kim, OstomyConnection Founder, blogger and content marketer, was kind enough to write an amazing blog for the WOCN Society, highlighting the 2015 Conference. 

I had the honor of attending the Wound, Ostomy and Continence Nurse (WOCN®) Society’s 47th Annual Conference in San Antonito, TX.

This event was created for nurses to gain insights from industry leaders, develop new skills, network with fellow WOC professionals, and earn continuing education credits.

It was incredible meeting nurses from across the country, hearing incredible stories and learning more about their vital role in caring for ostomy patients.

Here are a few inspiring messages WOC Nurses want you to know…

"The stoma can and often does make you healthy again, but it does not make you any more or any less of a person. Do not allow the stoma to define who you are."
– Coleen Potts, CWOCN, Cleveland Clinic, Ohio. Ileostomy since 1991

"You’re not going to welcome it (ostomy) with open arms, but someday you’re going to look at it differently and appreciate what its done for your life, I know I did. You and me together, we're gonna do this."
– Margaret Goldberg, CWOCN, Delray Wound Treatment Center, Florida. Ileostomy since 1969

"You are stronger than you think. You already have the life experience to cope with adversity and challenges, just draw upon those "tools" to give you the resiliency you need to be in charge of your ostomy, and not let the ostomy be in charge of you!"
– Rita Whitney, CWOCN, Medical Center of Lewisville, Texas

WOC Nurses have a pledge, it's ostomy care. They are highly prepared experts who treat complex wounds, ostomy issues, and incontinence.

WOC Nurses have a passion, it's patients. They hear our voices when we call. They’ll be a shoulder when we cry. And when our hope is gone, they’re near. It makes no difference who you are, they’re our angels.

They know all we need is time, give us hope for better days and they won't dare let us give up the fight.

Sincere thanks and appreciation goes out to all WOC Nurses for their dedication to caring for ostomates.

If you or a loved one are suffering from a wound that won't heal, facing ostomy surgery, or having problems with incontinence…you deserve a WOC Nurse!

Find a wound, ostomy and continence nurse in your area HERE.

Tags:  nurses  nursing  ostomy  stoma  WOC nurse  wocn 

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