It’s “All In the Bag”
Ways to support new ostomy patients may reduce post-operative body image issues.
An “ostomy” is the result of a surgery redirecting either the gastrointestinal or the urinary tract to the surface of the abdominal wall, creating an opening called a stoma. The excretions from the body are then contained by an ostomy bag – a clear “reshap[ing] of the external body.”1 Reasons for the procedure include birth defects, chronic conditions such as Crohn’s Disease or ulcerative colitis (both are forms of Inflammatory Bowel Disease or “IBD”), cancer, and acute injuries.2
Some patients receive temporary ostomies, meaning that the procedure is reversed after the body has time to rest and heal, while other patients live with ostomies permanently2. Most often, ostomy surgery is reserved for patients that have been largely unresponsive to medications and have little, if any, non-surgical therapies left available. Emergency surgeries, triggered by the perforation of the bowel, account for more than 62% of surgical cases.2 Therefore, an ostomy has the potential to not only be a sudden change, but forces the recognition and physical confrontation of the patient’s serious illness.
How does the acquisition of an ostomy influence the patient’s body image? The surgery has a unique impact on the individual’s body a as a “social object”: the materialization of gender identity and body image in a social and cultural context.3 Although the appliances of ostomy bags have been greatly improved recently, a patient must still deal with the emotional and physical scars of the surgery. The fragility of body image in a medical arena can be “easily impaired in diseases treated by [an] ostomy,” one patient expressed.“Can you imagine how a person who was always clean, with a fragrant body and having a healthy life style, has been changed to a person with bad body odor who cannot even tolerate himself?” 4 The main factors in the development of post-surgical body image are the patient’s gender, rationale for the ostomy, past disease history, personality traits, perceived sense of control, and self-reported quality of life.
Confidence or Confusion
The best indication of the patient’s post- surgery psychological and physiological well-being takes place before any surgical incision is made, and coincides with patient’s lowest reported body image.5 How prepared is the patient for this change, and how confident are they with the responsibilities of their subsequent lifestyle? Logically, the patient that has more valid information and feels confident in her ability to live with an ostomy will have a better outcome compared to a patient who received little information and is anxious about caring for an ostomy.2 This is understandably intertwined with the timeline of the ostomy: the patients with a planned procedure at their preferred hospital and with their selected surgeon have different post-surgical outcomes compared with patients who have emergency surgery. Emergent patients do not have the same chance to ask questions about the surgery or have the stoma site marked on their abdomen to facilitate some emotional preparedness. 4
The marking of the stoma site is important, primarily because it permits patient consensus with the surgeon, and secondly because the location of the stoma may affect what clothing can be worn post-surgery (i.e. pants cannot sit directly on the stoma, they must fit above or below) and many patients later fear that their ostomies are undesirably detectable. At least 30% of ostomy patients report that their stoma is in a “poor location”.5
Although advanced appliance technology has allowed ostomates the freedom to exercise, swim, and engage in other normal activities without limitations, there are nonetheless skills required in order to properly care for the ostomy. If the bag is not properly secured on the abdomen or the wafer (the part of the bag that sticks to the skin) has been eroded by ostomy output (i.e. not changed frequently enough), many patients experience leaks. Anatomically, the human body only has nerves that signal the need to use the bathroom in the ascending colon, therefore individuals with an ostomy do not retain the ability to know they “have to go,” and similarly cannot tell if the bag is full without actually checking it. Accidents, whether they are in private or in public, are not only embarrassing, but also have the potential to undermine the individual’s confidence in properly using ostomy supplies.5 This confidence is “key to [the ostomate’s] understanding” of their degree of perceived control over the situation.6 Further, the act of emptying the bag itself can become a negative experience due to the actualization and recognition of altered anatomy. Betty, a 67-year-old woman with a colostomy – a procedure she described as a “mutilation” – found it so disturbing that she severely restricted her diet so that she would not have to empty the bag.1
Mirror, Mirror, on the Wall…
“She severely restricted her diet so that she would not have to empty the bag. Of course, previous body image issues have the potential to worsen with the acquisition of an ostomy. Patients who had placed “excessive importance … [on] bodily appearance as a source of self-esteem” and had perfectionist ideals were associated with worse psychological adjustment. 7 In that vein, individuals with IBD have often battled for years with medications that incur trademark physical signs (such as ‘chipmunk cheeks’ from Prednisone), and may also appear emaciated due to malnutrition or weight loss. In both situations, the inconsistency in body image and appearance leaves the patient vulnerable to experiencing increasingly negative thoughts and feelings about their body. Interestingly, although many logically understand that the ostomy saved their life, at least 30% of patients will experience clinical depression, with about half of all patients experiencing some depression and/or anxiety, and 25% of all patients indicating feelings of anxiety or depression at ten weeks post-operative.5 However, this is likely under-reported. If every ostomy patient was asked about his or her psychological functioning, it is “likely that more patients with clinically significant psychological symptoms would be identified”. 6 This points to the ostomy as a traumatic event that can act as a catalyst for the development of behavioral problems.
One Is The Loneliest Number
Although the experience is seldom discussed, it is estimated that one in every 1,000 people in the United States has an ostomy. In addition to recovery in the hospital and at home, it can be difficult for the patient to trust others in disclosing information about their ostomy. There is a natural inclination towards isolation: with 79% of patients withdrawing from friends or limiting contact with them.8 S.ocial support and integration are crucial to the rehabilitation of the individual, which allows them to be relaxed and calm when discussing their ostomy and contributes to their positive long-term adjustment and social functioning.
Prepare to Succeed
“Ostomies are not simply life changing, but they are life saving for those who need them. Ostomies are not simply life changing, but they are life saving for those who need them. While the largest factor in predicting post-surgical body image is an ostomate’s self-efficacy, the importance shifts from what predicts body image to what can be done to restore it. In order for ostomates to feel and be successful post-surgery, steps need to be implemented at every part of the process. A Wound, Ostomy and Continence Nurse (WOCN) should be able to provide new patients with reliable information regarding diet, exercise, post-surgical instructions, and warning signs that may require medical attention. Patients should be given access to see and feel the appliances before their surgeries to become familiarized. The most prepared and supported patients will be able to properly emotionally cope in as little as two to three weeks after their surgery.4 The average modern patient takes anywhere from six to twelve months to physically recover comfortably to life with an ostomy; this represents a significant change from the five to ten years it was estimated to take in 1965.5
Companies that make ostomy supplies readily distribute samples of their products to new patients. They also offer instructional DVDs and books of stories from ostomates. If these products, which are already available, were collected in a bag and given to new patients, then things would truly be “all in the bag.” In addition, patients would benefit from a specialized medical book with their surgeon’s contact information, insurance information, a medication list, instructions for complications, information on ostomy appliances, a glossary, WOCN contact information, a post-operative chart/dates, and a list of helpful websites/other resources. By having the correct information and supplies in one place, the patient has the opportunity to focus on their recovery and find relief in having a reliable post-surgical kit.
When the patients realize the freedom an ostomy can provide, they will discover that strength, courage, determination, and spirit are all “in the bag.”
1Manderson, L. (1999). Gender, normality and the post-surgical body. Anthropology & Medicine, 6(3), 381-394.
2 Pittman, J. (2011). Characteristics of the patient with an ostomy. J Wound Ostomy Continence Nurs., 38(3), 1-9.
3 McVey, J., Madill, A., & Fielding, D. (2001). The relevance of lowered personal control for patients who have stoma surgery to treat cancer. British Journal of Clinical Psychology, 40, 337-360.
4 Dabirian, A., Yaghmaei, F., Rassouli, M., & Tafreshi, M. Z. (2011). Quality of life in ostomy patients: a qualitative study. Patient Preference and Adherence, 5, 1-5.
5Bryant, R. (Director) (2010, January 1). Beyond post-op complications: living with an ostomy. WEBWOC Nursing Education Program. Lecture conducted from WEBWOC Nursing Education Program, Minneapolis.
6 White, C. A., & Hunt, J. C. (1997). Psychological factors in postoperative adjustment to stoma surgery. Ann R Coll Surg Engl, 79, 3-7.
7 Weinryb, R. M., Gustavsson, J. P., & Barber, J. P. (2003). Personality traits predicting long-term adjustment after surgery for ulcerative colitis. Journal of Clinical Psychology, 59(9), 1015-1029.
8 Nichols, T., & Riemer, M. (2009). Social isolation: the association between low life satisfaction and social connectivity. Hollister, 1, 1-4.