The Ostomy Files: Psychological Adjustment after Ostomy Surgery: What Do We Know?

    Ostomy surgery profoundly impacts patients, psychologically and physically. However, the literature offers scant help to clinicians who want to understand how age, type of surgery, elapsed time from surgery, and whether a stoma is permanent or temporary can impede or assist rehabilitation and diminish or improve quality of life.

It is not unusual for the perception of what the patient is actually experiencing to differ from what the clinician assumes the patient is experiencing.¹ Because clinicians are unable to get inside a patient’s head or the patient is reluctant to share deepest concerns and fears, clinicians are frequently left to base their assessment of how the patient is adjusting to ostomy surgery on less than accurate information. Even though more investigation is needed, some studies have been conducted that examine these issues and help to crystallize some heretofore-unknown issues.

    The Montreux Study² was the first large (4,739 patients) and most recent multi-national study to examine the effects of time on the quality of life for patients with a permanent stoma. Even as the time from surgery lengthened and quality of life improved, time was not the only factor that contributed to that outcome. The study found three other factors that affected quality of life in patients with a permanent stoma: 1) satisfaction with the care provided; 2) confidence in self-care; and 3) a trusting and therapeutic relationship with the stoma care nurse.

    Another study³ of quality of life and adjustment to an ostomy conducted in the UK found a “surprising distribution of responses to questions relating to quality of life and adaptation to body image.” The researchers felt these variances may have been related to the patient age or presurgical diagnosis (eg, cancer versus diverticulitis versus inflammatory bowel disease). Another area of dissatisfaction that negatively impacted quality of life was significant problems with sexual activity.

    In 1996, Pieper et al⁴ studied adjustment to ostomy among three groups of patients 18 years or older with fecal stomas: 1) temporary ostomies resulting from disease; 2) temporary ostomies resulting from trauma; and 3) permanent ostomies resulting from disease. Each of these patients received teaching from a WOC Nurse and was treated the same regardless of whether their stoma was permanent or temporary. Echoing the results of the more recent Montreux Study, this group of patients highly valued healthcare and the clinicians caring for them and had achieved a relatively satisfactory quality of life. What became apparent was how each of the groups coped with their situation. The trauma group appeared to have had slightly more problems and used different coping mechanisms than the other two groups.

    That same year, Pieper and Mikols⁵ published another study comparing pre- and post-discharge concerns of new ostomy patients with permanent and temporary ileostomies and colostomies. Interestingly, the same eight items were demonstrated to be of high concern both before and after hospital discharge and differed little between the temporary and permanent groups. At the top of both lists were fear of leakage and odor.

    Regardless of the indication for ostomy surgery or whether the surgery is temporary or permanent, it is apparent that these all ostomy patients have similar concerns and needs. Studies have confirmed that a patient’s satisfaction with the healthcare received, the development of a therapeutic relationship with an ostomy specialist (WOC Nurse, ostomy care nurse), and the mastery of self-care are key components in adjusting to living with an ostomy and improving the postoperative quality of life. Every ostomy patient, regardless of age or pre-existing condition, should receive a structured, consistent program of patient teaching and counseling - it is critical to his or her rehabilitation.

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

1. Turnbull GB, Arnold A, Aronson L, 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.

2. Marquis P, Marrel A, Jambon B. Quality of life in patients with stomas: The Montreux study. Ostomy Wound Manage. 2003;49(2):48–55.

3. Nugent KP, Daniels P, Steward B, Patankar R, et al. Quality of life in stoma patients. Dis Colon Rectum. 1999;42(12):1569–1574.

4. Pieper B, Mikols C, Grant TRD. Comparing adjustment to an ostomy for three groups. J WOCN. 1996;23:197–204.

5. Pieper B, Mikols C. Predischarge and postdischarge concerns of persons with an ostomy. J WOCN. 1996;23:105–109.