The Ostomy Files: A Canadian Perspective on Quality of Life

    Much has been written about the quality of life of someone living with a stoma. This topic has been hard to characterize, understand, and “pin down” – mostly because quality of life varies from person to person and changes as the person moves through life. Quality of life has been referred to as “that elusive quantity…a standard of living that can only be defined by the patient.”¹ In an effort to better understand quality of life as it is defined by the person living with a stoma, 10 individuals with an ostomy recently gathered in Montreal to share their experiences and feelings in an effort to more clearly characterize what living a life with quality means to them.

    The 10 persons represented nearly every province in Canada. Four had undergone colostomy surgery, five had an ileostomy, and one had a urostomy. The group was equal regarding gender (five men, five women) and ranged in age from 34 years to over 65 years. After briefly reviewing findings about ostomy and quality of life in the literature, group members were asked to validate whether those findings were applicable in their own lives. The remainder of the day was spent in open discussion with focus on wear time, reimbursement, emotional support, sexuality, relationships, and education. After each of these topics was discussed, group members were asked to list the most important issues; once these issues were identified, group members ranked them to determine the top five they believed were the most important in contributing to quality of life.

    Due to a tie vote, group members identified six areas they believed were essential to enhancing and contributing to quality of life after ostomy surgery:
  1. Health (emotional and physical)
  2. Education and knowledge about living with and caring for an ostomy
  3. Adequate insurance coverage (public and private) and payment for ostomy supplies
  4. Integration of the ostomy into everyday life
  5. The reliability of an ostomy pouching system
  6. Support (emotional and physical) from friends, family, healthcare professionals, and support groups.

    The group also acknowledged several issues that made an acceptable quality of life difficult to achieve: poorly sited stomas (ie, “quality” surgery) that were difficult to care for, see, or hard to pouch; inadequate insurance coverage and payment for a sufficient variety and number of ostomy supplies; and ostomy products that did not maintain a secure seal (sustained and predictable wear time, regardless of the length of wear time).

    During the discussion of ostomy pouching systems, a surprising array of opinions was presented regarding what length of wear time was acceptable and/or pleasing to the patient. Six participants wore their pouching system for as long as 2 to 5 days; the remainder wore it for about 6 to 7 days. Group members identified five criteria that could positively or negatively influence wear time: climate, diet, activity, stoma site, and the pouching system. During the discussion of wear time, some participants said they find changing their pouching system time-consuming; hence, they preferred longer wear times when possible. Group members stated they had to schedule time in their daily life to change the pouching system – depending on the complexity of their individual management problems (ie, a poorly sited stoma, retraction, and other challenges), pouch change could require a significant amount of time and interrupt daily activities. A few of the participants voiced personal preferences, changing the pouching system daily because “that’s my choice.” As the discussion progressed, it became evident that the individuals wanted a larger role in choosing how they manage their stoma. Managing bodily function should be a personal decision, one the group determined to be extremely private. The participants acknowledged that wear time should not be a goal in itself but rather a personal decision driven by an individual’s desire to improve quality of life.

    Due to inequities among Canadian Provincial health authorities regarding coverage and payment for ostomy supplies, some Canadian ostomates receive a yearly check of about $600.00 CAD (about $521.00 US) to pay for their supplies. Apparently, this allotment has not increased over the past several years. Other provinces do not cover ostomy supplies at all and individuals are forced to pay out-of-pocket for all ostomy-related purchases. In some Canadian provinces, the services of a WOC Nurse (called Enterostomal Therapist in Canada) are not available. The lack of services presents unique problems in learning self-care, having access to a variety of pouching systems, and handling daily activities with a sense of confidence and security. What became clearly evident was that needs were not being met, not only for “below the waist” issues, but also for “between the ears” (psychological and emotional) concerns.

    Several action points were developed that will be published later in 2006 in a variety of professional and lay journals. The group’s desire was to establish a consensus on quality-of-life issues surrounding living a “normal” life with an ostomy. As was mentioned earlier, the person living the experience is the only one who can define quality of life. These individuals wanted their opinions to be heard and were grateful for the opportunity the discussion session provided. Healthcare professionals caring for individuals with a stoma have much to learn from their patients.

    The Ostomy Files is made possible through the support of ConvaTec, a Bristol-Myers Squibb Company, Princeton, NJ.