The Ostomy Files: What Ostomy Patients Still Don’t Know 54 Years Later

    The mid-1950s was an important time of discovery for ostomy surgery and follow-up care.¹

The “mystery” of ileostomy dysfunction was solved, the skin barrier was discovered, and manufactured ostomy pouching systems were made available for the first time. Before and shortly after this time, patients were left to fend for themselves as far as stoma management was concerned, fortunate to have survived the surgery. After more surgeons had perfected new colorectal surgical techniques and the ET nurse was identified as an integral part of the ostomy rehabilitation team, hospitals dedicated time, resources, and staff to ensure new ostomy patients were not discharged before they had mastered self-care.

    Today, clinicians in every setting are saddled with multi-tasking, working under constantly changing and more restrictive public and private payment and coverage policies, a national nursing shortage, too many patients, and increased scrutiny from regulators, healthcare consumers, and their attorneys. Added to this is the quick trip patients are forced to take through our healthcare continuum — shortened hospital stays, meted home health visits, and limits on stays in long-term care facilities. During this whirlwind journey, new ostomy patients often miss out on receiving accurate and complete instructions on how to care for their newly acquired stoma.^2,3 Peristomal skin complications range between 18% and 55%< sup >4 although empiric evidence suggests that most patients living with a stoma will experience peristomal skin complications at some time and require treatment.< sup >5 Each of these factors contributes to an increase in the healthcare dollars needed to care for these patients and more importantly, a decrease in the quality of the individual’s life.

    A visit to any of several ostomy chat rooms available on the Internet (eg, www.ostomyinternational.org; www.uoa.org; www.ostomates.org; www.stuartonline.com) quickly reveals that patients are still struggling with the same lack of knowledge they were 50 years ago. Here is a sampling of patient concerns that appear repeatedly on these websites:

  • Does mouthwash in an ostomy pouch really control odor?
  • How much water should I use for my colostomy irrigation?
  • Will eating marshmallows slow down intestinal function enough to change the pouching system without leakage?
  • Will an aspirin in the pouch help reduce odor and should it be replaced each time the pouch is emptied?
  • If I lose weight, will the size of the hernia decrease?
  • Does it matter if I stand or sit during the discharge phase of my colostomy irrigation?
  • I had my surgery 6 months ago and I don’t even know what an ileostomy is.
  • I use Maalox® under my wafer to heal irritated skin.
  • Applesauce helps control gas noise.
  • Rice Krispies® help slow down the amount of stool.
  • A teaspoon of bulk gelatin dissolved in water will firm up loose stool.
  • Should changing my son’s pouch be so painful? I’m using powder, stoma glue, and latex paste, just like the nurse showed me.

    In an era of evidence-based medicine, advanced surgical techniques, and newer ostomy products and technologies, such misinformation and lack of knowledge is disturbing. Clinicians are constantly searching for research to support clinical practice. Unfortunately, because ostomy care is an area of clinical practice that is sorely lacking in research, patients are often prescribed methods that have been passed down from patient to patient or clinician to clinician by unspecialized clinicians or other patients. It is heartening, however, to note that the evidence-based aspect of ostomy care has improved in the past few years as more studies are conducted and published.

    No quick answers are available to the vast problems facing America’s ostomy population. Clinicians who encounter an ostomy patient, regardless of the clinical setting or the amount of time in that setting, bear the responsibility of making certain the patient receives current and correct information about the ostomy. If the clinician feels he or she has an inadequate working knowledge of this information, a referral should be made to an expert, such as a Wound Ostomy Continence Nurse (WOCN) or to the resources available at most ostomy manufacturers’ Customer Care departments where ostomy experts are available to offer assistance, provide samples, and/or make referrals.

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

1. Turnbull GB, Turnbull RW. The history and current status of paramedical support for the ostomy patient. Sem Colon & Rectal Surg. 1991;2(2):131–140.

2. Turnbull GB, Arnold A, Aronson L, Hawke G, et al. The role of industry in improving quality of life for persons with an ostomy: a Canadian consensus. Ostomy/Wound Manage. 2004;50(9):78–85.

3. Turnbull GB, Colwell J, Erwin-Toth P. Quality of life: pre, post, and beyond ostomy surgery. Ostomy/Wound Manage. 2004;50(7A Suppl):2–12.

4. Colwell J, Goldberg M, Carmel J. The state of the standard diversion. JWOCN. 2001;28(1):6–17.

5. Rolstad BS, Erwin-Toth P. Peristomal skin complications: prevention and management. Ostomy/Wound Manage. 2004;50(9):68–77.