The Ostomy Life Study: the everyday challenges faced by people living with a stoma in a snapshot

© 2 01 5 M A H ea lth ca re L td Intestinal stomas are created for a variety of reasons, including acute diverticulitis, trauma, and inflammatory bowel disease. However, cancer is by far the most prevalent reason for the formation of a stoma, and has been shown to account for more than half of the cases in a large post-marketing clinical study (Andersen et al, 2011). In Europe, survey results have indicated that approximately 700 000 people are living with a stoma, and in the US, more than 1 million people have a stoma (European Ostomy Association (EOA), 2012; United Ostomy Associations of America (UOAA), 2014). A stoma operation causes profound changes in a patient’s life because of the resulting physical damage, disfigurement, loss of bodily function, and change in personal hygiene (Persson et al, 2005). It can change the person’s social life and make them feel different because they do not display the characteristics and attributes that society deems normal, due to their changed body (Brown and Randle, 2005). It may even lead to social isolation. The patient may feel overwhelmed by having a serious disease, and may find it difficult to understand the implications of a stoma (Carlsson et al, 2010). Nevertheless, the reaction to stoma surgery varies from person to person. For some, it will be a new lease of life, while for others it will be a devastating experience. The study by Pieper and Mikols, published almost 20 years ago, identified sudden leakage of stool, presence of odour, participation in sports, alteration in sleep habits and the need for further treatment to be of highest concern for people dependent on a stoma appliance (Pieper and Mikols, 1996). Since then, there have been significant advances in stoma appliances and an increase in nurses specialising in stoma care, yet a large proportion of people with a stoma continue to experience adjustment problems and are unable to live the life they want to live (Brown and Randle, 2005).