Guest Editorial: With Respect to Persons With an Ostomy

    An estimated 750,000 Americans and 75,000 Canadians are living with an ostomy.^1,2 Both the US and Canada have active wound ostomy continence nursing (WOCN) organizations and volunteer-based ostomy organizations (eg, the United Ostomy Association and the United Ostomy Association of Canada) that help facilitate the care management and social/emotional adjustment of persons with an ostomy.

    The articles in this issue highlight the points outlined in the and the International Ostomy Association's Charter of Ostomates' Rights³ with respect to the care of these individuals. It is second nature for wound ostomy continence nurses caring for persons with an ostomy to incorporate these rights into their daily contact with these individuals, but how many others, including clinicians, are familiar with these rights?

     The past decade has seen many advances in ostomy management, including new surgical techniques and better pouching systems. Despite these advancements, a stigma is still associated with ostomies - people don't talk about the subject. Wound ostomy continence nurses often are asked, "How can you take care of patients with ostomies? How can you stand the odor?" Many people say they remember someone with an ostomy who could never get a pouch to stick. But how many people know about the person who lives successfully with an ostomy? How many people would be surprised to find out they know someone with an ostomy? I had a patient tell me that until a celebrity is a guest on Oprah and talks about his or her ostomy, it will remain a topic people are reluctant to discuss. Former Senate Majority Leader Bob Dole had the temerity to discuss erectile dysfunction and now that is not such a taboo subject. Would that be the case with ostomies? Oprah, are you listening?

    This issue addresses several aspects of ostomy care. Dr. Janice Beitz presents newer surgical interventions in the arena of fecal and urinary diversions - ileoanal reservoir and orthotopic bladder reconstruction (neobladder) - that may be offered to individuals to eliminate the need for conventional pouching systems. Although research is needed to address the effectiveness and consequences of what Dr. Beitz calls "body parts substitution," these new procedures offer options along with hope for improved quality of life for patients. The article by Susan Gallagher and Judy Gates discusses the special considerations necessary when treating the obese ostomate - a timely topic because obesity, a problem that is on the rise, has recently been approved by Medicare as a medical diagnosis.

    Two articles address the challenges of managing stomal and peristomal complications. Jane Ellen Barr presents a way to categorize stomal complications based on etiology and location to facilitate the most appropriate management of stomal problems; Bonnie Sue Rolstad and Paula Erwin-Toth state that identifying risk factors for the occurrence of peristomal skin complications according to clinical features and types of injury, as well as etiology, will help optimize assessment and management approaches. Many stomal and peristomal complications can be avoided by proper preoperative stomal siting, but because ostomy care can be a long-term if not lifelong process, many problems do not surface until the person with an ostomy is home and "on his/her own." In addition, as patients spend fewer and fewer days in the hospital after ostomy surgery, clinic and home health support are becoming more and more important to assist in preventing and managing these complications.

    The article by Gwen Turnbull and colleagues discusses the important role manufacturers can and should play in helping persons with an ostomy obtain supplies and information. An Ostomy Manufacturers Communication Protocol is presented to define roles and enhance communication among patients, providers, and manufacturers that addresses concerns in an organized, timely manner.

    The Ostomate Bill of Rights and the International Ostomy Association's Charter of Ostomates' Rights affirm that patients want and have a right to more than pouching advice - they want assistance with issues of every day living and all the elements of quality of care that should be available to them. The brainchild of the Ostomy/Wound Management Editorial Advisory and Review Boards, this special focus issue of O/WM underscores these rights, offering information based on research and the expertise of clinicians who have embraced ostomy care and strive to make the lives of persons with ostomies as healthy, stigma-free, and "normal" as possible.