Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet. 2012; 380:(9836)37-43

Beeken RJ, Haviland JS, Taylor C Smoking, alcohol consumption, diet and physical activity following stoma formation surgery, stoma-related concerns, and desire for lifestyle advice: a United Kingdom survey. BMC Public Health. 2019; 19:(574)

Burch J. Preoperative care of patients undergoing stoma formation: what the nurse needs to know. Nurs Stand.. 2017; 31:(36)40-43

Camilleri-Brennan J, Munro A, Steele RJ. Does an ileoanal pouch offer a better quality of life than a permanent ileostomy for patients with ulcerative colitis?. J Gastrointest Surg.. 2003; 7:(6)814-9

Carlsson E, Berndtsson I, Hallén AM, Lindholm E, Persson E. Concerns and quality of life before surgery and during the recovery period in patients with rectal cancer and an ostomy. J Wound Ostomy Continence Nurs.. 2010; 37:(6)654-61

Davis C, Naci H, Gurpinar E, Poplavska E, Pinto A, Aggarwal A. Availability of evidence of benefits on overall survival and quality of life of cancer drugs approved by European Medicines Agency: retrospective cohort study of drug approvals 2009-13. BMJ.. 2017; 359

Dibley L, Czuber-Dochan W, Woodward S Development and psychometric properties of the inflammatory bowel disease distress scale (IBD-DS): a new tool to measure disease-specific distress. Inflamm Bowel Dis.. 2018a; 24:(9)2068-2077

Dibley L, Czuber-Dochan W, Wade T Patient decision-making about emergency and planned stoma surgery for IBD: a qualitative exploration of patient and clinician perspectives. Inflamm Bowel Dis.. 2018b; 24:(2)235-246

Dibley L, Norton C, Whitehead E. The experience of stigma in inflammatory bowel disease: An interpretive (hermeneutic) phenomenological study. J Adv Nurs.. 2018c; 74:(4)838-851

Department of Health. Long term conditions compendium of information: third edition. 2012. (accessed 26 November 2019)

Frohlich D. Support often outweighs stigma for people with inflammatory bowel disease. Gastroenterol Nurs.. 2014; 37:(2)126-136

Haidt J, McCauley C, Rozin P. Individual differences in sensitivity to disgust: a scale sampling seven domains of disgust elicitors. Personality and Individual Differences. 1994; 16:(5)701-713

Knowles SR, Gass C, Macrae F. Illness perceptions in IBD influence psychological status, sexual health and satisfaction, body image and relational functioning: A preliminary exploration using Structural Equation Modelling. J Crohns Colitis.. 2013; 7:(9)e344-50

Kuruvilla K, Osler T, Hyman NH. A comparison of the quality of life of ulcerative colitis patients after IPAA vs ileostomy. Dis Colon Rectum.. 2012; 55:(11)1131-7

Ma N, Harvey J, Stewart J, Andrews L, Hill AG. The effect of age on the quality of life of patients living with stomas: a pilot study. ANZ J Surg.. 2007; 77:(10)883-5

McCombie AM, Mulder RT, Gearry RB. How IBD patients cope with IBD: a systematic review. J Crohns Colitis. 2013; 7:(2)89-106

Mitchell KA, Rawl SM, Schmidt CM Demographic, clinical, and quality of life variables related to embarrassment in veterans living with an intestinal stoma. J Wound Ostomy Continence Nurs.. 2007; 34:(5)524-532 WON.0000290732.15947.9e

Moss-Morris R. Adjusting to chronic illness: time for a unified theory. Br J Health Psychol. 2013; 18:(4)681-6

Näsvall P, Dahlstrand U, Löwenmark T, Rutegård J, Gunnarsson U, Strigård K. Quality of life in patients with a permanent stoma after rectal cancer surgery. Qual Life Res.. 2017; 26:(1)55-64

Notter J, Burnard P. Preparing for loop ileostomy surgery: women's accounts from a qualitative study. Int J Nurs Stud.. 2006; 43:(2)147-59

Oades-Souther D, Olbrisch M. Psychological adjustment to ostomy surgery. Rehabilitation Psychology. 1984; 29:(4)221-237

Persson E., Hellstrom AL. Experiences of Swedish men and women 6 to 12 weeks after ostomy surgery. J Wound Ostomy Continence Nurs.. 2002; 29:(2)103-8

Pittman J, Rawl SM, Schmidt CM Demographic and clinical factors related to ostomy complications and quality of life in veterans with an ostomy. J Wound Ostomy Continence Nurs.. 2008; 35:(5)493-503

Prieto L, Thorsen H, Juul K. Development and validation of a quality of life questionnaire for patients with colostomy or ileostomy. Health Qual Life Outcomes. 2005; 3

Rothrock N, Kaiser K, Cella D. Developing a valid patient-reported outcome measure. Clinical Pharmacology and Therapeutics. 2011; 90:(5)737-742

Savard J, Woodgate R. Young peoples' experience of living with ulcerative colitis and an ostomy. Gastroenterol Nurs.. 2009; 32:(1)33-41

Silva MA, Ratnayake G, Deen KI. Quality of life of stoma patients: temporary ileostomy versus colostomy. World J Surg.. 2003; 27:(4)421-4

Sirois FM, Hirsch JK. A longitudinal study of the profiles of psychological thriving, resilience, and loss in people with inflammatory bowel disease. Br J Health Psychol.. 2017; 22:(4)920-939

Smith DM, Loewenstein G, Rozin P, Sherriff RL, Ubel PA. Sensitivity to disgust, stigma, and adjustment to life with a colostomy. J Res Pers.. 2007; 41:(4)787-803

Smith DM, Loewenstein G, Jankovic A, Ubel PA. Happily hopeless: adaptation to a permanent, but not to a temporary, disability. Health Psychol.. 2009; 28:(6)787-91

Taylor S. Adjustment to threatening events: a theory of cognitive adaptation. Am Psychol.. 1983; 38:(11)1161-1173

Umanskiy K, Fichera A. Health related quality of life in inflammatory bowel disease: the impact of surgical therapy. World J Gastroenterol.. 2010; 16:(40)5024-34

Wagnild GM, Young HM. Development and psychometric evaluation of the Resilience Scale. J Nurs Meas.. 1993; 1:(2)165-178

Walker JG, Jackson HJ, Littlejohn GO. Models of adjustment to chronic illness: using the example of rheumatoid arthritis. Clin Psychol Rev.. 2004; 24:(4)461-88

Whitehead WE, Morrison A, Crowell MD, Heller BR, Robinson JC, Benjamin C, Horn S. . Development of a scale to measure childhood learning of illness behavior. West J Nurs Res.. 1992; 14:(2)170-183

Helping patients live well with a stoma for inflammatory bowel disease: directions for future research

12 December 2019
5 min read
Volume 28 · Issue 22


Lesley Dibley, Reader in Nursing Research and Education, University of Greenwich (, and Jennie Burch, Head of Gastrointestinal Nurse Education, St Mark's Hospital, outline the need to assess patients' emotional as well as physical needs before stoma surgery for IBD

In the UK, approximately 21 000 people undergo intestinal stoma surgery each year for bowel cancer, abdominal trauma, neurogenic bowel due to spinal injury, and inflammatory bowel disease (IBD)(Beeken et al, 2019). Population health demographics are changing; on average, people live longer and enter middle and older age with at least one chronic condition (Barnett et al, 2012; Department of Health (DH), 2012). Survival needs to be accompanied by good quality of life (QoL) (Davis et al, 2017).

Lifesaving and symptom-improving stoma surgery improves QoL for many (Camilleri-Brennan et al, 2003; Silva et al, 2003; Umanskiy and Fichera, 2010; Kuruvilla et al, 2012), but can also contribute to a disease-related burden of distress (Dibley et al, 2018a), which may be compounded in individuals who find change difficult.

Register now to continue reading

Thank you for visiting British Journal of Nursing and reading some of our peer-reviewed resources for nurses. To read more, please register today. You’ll enjoy the following great benefits:

What's included

  • Limited access to clinical or professional articles

  • Unlimited access to the latest news, blogs and video content