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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



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.

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Guided Nursing Electives----Wound Care at Roper Hospital

Posted By Lauren Schoener-Gaynor, Thursday, July 30, 2015

The following post was written by Xiang Liu, a student at the Medical University of South Carolina.

Ever since I enrolled in the BSN program, I have heard a lot about specialized nursing. I became interested in wound care right after I did my first “wet to dry” dressing change in the Simulation lab.

Wound care is a science and is accompanied by its own pathology, language, nursing skill set and patient education. Fortunately, the Guided Nursing Electives course at Medical University of South Carolina gave me an opportunity to better understand wound care, and I was blessed with wonderful mentors and preceptors who provided me with a great start for becoming a wound care nurse.

By working with my mentor at Roper Hospital, SC, I saw a variety of wounds, I acquired knowledge and skills relative to management of wounds, incisions, skin ulcers and ostomies. I noted the different types of dressings and the different practices in day to day performance. I realized how medical complications could be prevented by providing patient education and by simply proper hand washing and infection control.  I observed how my mentor changed dressings, how she handled wounds; more importantly, I was fascinated by how she interacts with patients, patients’ families and how she applies her global nursing skills. She is not only a great role model for wound care, she is also a role model to me personally with respect to becoming an excellent nurse in general. 

I have gained additional learning experiences in this rotation.

First of all, I became familiar with ostomy and continence management. When I first studied ostomies, I believed no surgical procedure created more misunderstanding and fear than this one does. Through the time with my mentor, I gained a wealth of knowledge related to ostomy care).  First I learned that ostomies are not only from some colon cancer procedures, other bowel diseases such as diverticulitis, inflammatory bowel disease and even traumatic injury to the bowels may also require an ostomy. I learned that an ostomy can be temporary or permanent. I learned that there are a variety of ostomy procedures including colostomy and ileostomy depending on the location of the disease. I learned how to manage the stoma as well as pouches. On top of this, I realized how important it is for an ostomy nurse to be present for pre- and post-surgical management of the patient.

Every Monday morning, I followed my mentor to mark the stoma sites for the patients who were scheduled to have bowel surgery. We assessed their abdomen in order to decide where the stoma should be. We made every effort to help the doctor create the stoma in an area that the patient can easily see, reach and take care of. Stoma site selection was a priority during the preoperative preparation; it helps to reduce postoperative problems including leakage, skin irritation, and clothing concerns. Furthermore, we also assist patients and their family in understanding about stoma care and the use of ostomy appliances prior to surgery.

Having an ostomy is a life changing experience for many patients, but patients should still be able to work, play sports, and exercise. This indicates another important role of an ostomy nurse: an ostomy nurse is the one who provides continuous personalized care for the best outcome possible; we are the one who guides the patient to maintain their healthy active lifestyle.

At the end, I was so fortunate and was privileged to observe the physician (Dr. Lagares-Garcia) performing laparoscopic robotic bowel surgery.  This helped me to integrate my experiences and knowledge into a complete picture and was invaluable.

Second, I learned that excellent wound care means treating the whole patient, not just the wound. For example, we had a patient who was young but had an abscess that refused to heal. The patient has a long history of diabetes and obesity.   During the conversation with him, my mentor identified several inconsistencies:  the patient stated that he was living with his sister, but when he was asked if he has been checking his blood sugar routinely, he said he has been using his brother’s glucose meter.  We understand that people with diabetes often have poor circulation which causes slow healing. My mentor suspected that his blood sugar had not been well controlled which was contributing to his poor wound healing process. “No fancy dressing could help his wound, if he doesn’t treat his underlying problem”, my mentor said. Understanding these interlinked causes, a diabetic educator was suggested to facilitate him controlling his weight and to regain control of his diabetes. Successful treatment of difficult wounds requires assessment of the entire patient. Systemic problems impair wound healing, in fact, non-healing wounds may reveal systemic pathologies.

Third, the term 'palliative care' is used to describe care given to patients with advanced, life-limiting illness. The palliative care goals are then transferred to wound care for patients whose wounds do not heal. We had a patient who was 89 year old with a complicated medical history: above the knee amputations on both legs, diabetes mellitus, peripheral vascular disease, dementia, malnutrition, and problems with swallowing. The patient had multiple ulcers staged from I to IV. A couple of her ulcers were undermining and/or tunneling.  Based on the patient’s situation, my mentor suggested that the Palliative Wound Management might be more appropriate on this patient. She explained, “With the patient physical condition like this, aggressive wound treatment is not the priority intervention since the healing is not the primary goal. The goals of current wound care intervention (called palliative wound care) are stabilization of existing wounds, prevention of new wounds and symptom management.”

Finally, I discovered that finding new methods to improve wound healing have a great value in the clinical settings. This is another reason that I have passion for wound care since I have many years of research training in cancer biology. Specifically I believe that wound care is a clinical area that requires critical thinking and experimental approaches. Although there are a wide range of topical management options in wound management, choosing the most appropriate dressing makes a huge difference on the process of healing. Moreover, patients with underlying health conditions such as diabetes, stroke, heart disease, paralysis and many other illnesses contribute to wounds development that needs specialized care. “Effective dressing requires a stable “base”, my mentor said, implementation of personalized topical therapeutics guided by molecular diagnosis may result in significant improvements in outcome and my expertise in examining biological problems and finding solutions promotes me to be very interested in the science of wound care.

Overall, my experience in wound, ostomy and continence during the Guided Nursing Electives has given me an opportunity to witness how and what the WOC nurse should be and to understand the importance of treating the whole patient during wound care therapy. Wound care nurses must possess specialized wound care knowledge as well as a solid understanding of general nursing concepts, patient care, anatomy and physiology, and even psychological aspects of the patient. Wound care nurses are an extremely important part of the treatment team who make an enormous difference in the quality of patients’ lives by delivering expert care to individuals with wounds, ostomies and incontinence and by provide continuous care to help patients return to daily life and healthy lifestyles.

By writing this reflection paper, I am sharing how the experience improved my knowledge of wound care, and more significantly how it impacts my belief that nurses can make changes. 

Before attending nursing school, I spent 15 years carrying out human disease related diagnostic and preclinical drug development research. This research provided me with a strong medical science background, but also has led to my realization that findings from basic research need translation into practical applications to prevent, diagnose and treat human disease. In my opinion, more than any other healthcare profession, nurses know what patients need, know what to do to meet those needs and how to make a difference. Having now graduated with my BSN, coupled with my previous research training, enables me to apply critical thinking skills to clinical settings. This integration raises me to a higher level allowing me to address complex questions and problems in critical care, especially in improving healthcare outcomes and preventing disease.


Tags:  BSN  nursing  nursing student  WOC nurse  woc student  WOCN 

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