The Ostomy Files: Partners in Care

     My mother had ulcerative colitis (UC). I have spent a lifetime aware of frequent bathroom visits, restricted diets, irritability, and side effects from medications, such as bloating and fatigue. Ultimately, my mom underwent a total colectomy with end ileostomy just before her 70th birthday; despite the challenges of adjusting to a new body image and managing a pouching system, she wonders why she didn’t have surgery sooner. My mom’s experience reinforces the importance of providing counsel, product choices, and education for individuals undergoing ostomy surgery in order to ensure optimal quality of life.

     According to the Wound, Ostomy Continence Nurses Society (www.wocn.org), there are approximately 4,200 WOCNs in the US. New ostomy surgeries are estimated to number 110,000 yearly in the US.¹ How do we provide the care required? Ostomy suppliers have responded to that question by developing ostomy education curriculums for nurses and people living with an ostomy, available in both video and print formats. Product instruction guides come with large color pictures for aging eyes and can be adapted to multilingual instruction. Continuing education modules focusing on ostomy care are available for staff nurses. The WOCN Society has a variety of educational brochures; one of my favorites is “Basic ostomy skin care: a guide for patients and healthcare providers.”

     Yet despite a proliferation of resources, some people adapting to ostomy surgery are without access to the information they need. In Herlufsen et al’s² recent study of 202 people who had lived with their stoma for a mean of 8 years, 57% with an ileostomy, 48% with a urostomy, and 35% with a colostomy experienced peristomal skin disorders; of the skin disorders diagnosed, 77% were related to contact with stoma effluent. Only 38% of participants diagnosed acknowledged they had a skin disorder and more than 80% diagnosed with a skin disorder did not seek professional healthcare.

     A previous study by Lyon et al³ conducted among 325 patient in the UK who underwent ostomy surgery found that 73% reported a skin problem that affected normal use of the pouching system. People do not always perceive skin issues as a problem until wear time is affected but waiting to seek help until that point can lead to a vicious cycle of leakage and skin breakdown.

     Although the Herlufsen study concluded that people with an ostomy should have more frequent follow-up with their ostomy nurse, many regions of the country do not have ostomy clinics or trained ostomy nurses. People often are discharged home from the hospital without home care or an outpatient resource and therefore continue to use the pouching system they were provided at the time of discharge — ie, a one- or two-piece pouching system with a flat standard wear barrier. With infrequent or no follow-up, the ability to try other options such as integrated closures and filters — and more importantly, opportunities to assess the need for convexity and pre-cut pouching systems — may be missed, compromising quality of life.

     According to a recent WOCN survey,⁴ the majority (56.2%) of nurses work in acute care (12.9% are in home care and 15.5% in outpatient clinics) but the bulk of learning occurs after discharge from the hospital. We have a responsibility to provide the most recent, evidence-based, reliable education available — incorporating patient input into product choices, providing resources, and serving as a filter for the often confusing and conflicting (and sometimes inaccurate) information found on the Internet and through non-medical sources.

     Manufacturers have responded, with your professional guidance and recommendations, by providing education and service via patient and nursing educational programs and customer service programs. Consumer specialists provide dedicated telephone support to all end-users, home health agencies, healthcare facilities, and WOCNs regardless of product choice. These specialists have been educated to answer product-related questions and provide resources for your patients. They can assist in finding vendors and in monitoring patient progress, saving you time and improving your patients’ experiences. I invite you to partner with your ostomy product manufacturer representatives; we are all in the business of caring for people with intimate healthcare needs.

The Ostomy Files is made possible through the support of Coloplast Corp, Minneapolis, MN. The opinions and statements of the clinicians providing The Ostomy Files are specific to the respective authors and are not necessarily those of Coloplast Corp., OWM, or HMP Communications.

This article was not subject to the Ostomy Wound Management peer-review process.

1. Turnbull G. Ostomy statistics: the $64,000 question. Ostomy Wound Manage. 2003;49(6):22–23.

2. Herlufsen P, Olsen AG, Carlsen B, et al. Ostomy skin study: a study of peristomal skin disorders in patients with permanent stomas. Br J Nurs. 2006;15(16):854–862.

3. Lyon CC, Smith AJ, Griffiths CE, Beck MH. The spectrum of skin disorders in abdominal stoma patients. Br J Dermatol. 2000;143(6):1248–1460.

4. 2008 WOC nursing salary survey. Available at: www.wocn.org. Accessed March 25, 2009.