References

Brown H, Randle J. Living with a stoma: a review of the literature. J Clin Nurs. 2005; 14:(1)74-81 https://doi.org/10.1111/j.1365-2702.2004.00945.x

Burch J. Exploring the conditions leading to stoma-forming surgery. Br J Nurs. 2005; 14:(2)94-98 https://doi.org/10.12968/bjon.2005.14.2.17438

Claessens I, Probert R, Tielemans C, Steen A, Nilsson C, Andersen BD, Størling ZM. The Ostomy Life Study: the everyday challenges faced by people living with a stoma in a snapshot. Gastrointestinal Nursing. 2015; 13:(5)18-25 https://doi.org/10.12968/gasn.2015.13.5.18

Colwell JC, McNichol L, Boarini J. North America wound, ostomy, and continence and enterostomal therapy nurses current ostomy care practice related to peristomal skin issues. J Wound Ostomy Continence Nurs. 2017; 44:(3)257-261 https://doi.org/10.1097/won.0000000000000324

Colwell JC, Bain KA, Hansen AS, Droste W, Vendelbo G, James-Reid S. International consensus results: development of practice guidelines for assessment of peristomal body and stoma profiles, patient engagement, and patient follow-up. J Wound Ostomy Continence Nurs. 2019; 46:(6)497-504 https://doi.org/10.1097/won.0000000000000599

Danielsen AK. Life after stoma creation. Dan Med J. 2013; 60:(10)

Danielsen AK, Soerensen EE, Burcharth K, Rosenberg J. Learning to live with a permanent intestinal ostomy: impact on everyday life and educational needs. J Wound Ostomy Continence Nurs. 2013; 40:(4)407-412 https://doi.org/10.1097/won.0b013e3182987e0e

Di Gesaro A. Self-care and patient empowerment in stoma management. Gastrointestinal Nursing. 2012; 10:(2)19-23 https://doi.org/10.12968/gasn.2012.10.2.19

Down G, Vestergaard M, Ajslev TA, Boisen EB, Nielsen LF. Perception of leakage: data from the Ostomy Life Study 2019. Br J Nurs. 2021; 30:(22)S4-S12 https://doi.org/10.12968/bjon.2021.30.22.S4

Eucomed Medical Technology. Access to ostomy supplies and innovation: Guiding principles for European payers. 2012. http://www.medtecheurope.org/wp-content/uploads/2015/09/2002012_MTE_Access-to-Ostomy-Supplies-and-Innovation-Guiding-Principles-for-European-Payers_Backgrounder.pdf (accessed 22 March 2022)

Fellows J, Voegeli D, Håkan-Bloch J, Overgaard Herschend N, Størling Z. Multinational survey on living with an ostomy: prevalence and impact of peristomal skin complications. Br J Nurs. 2021; 30:(16)S22-S30 https://doi.org/10.12968/bjon.2021.30.16.S22

Frohlich DO, Zmyslinski-Seelig AN. How Uncover Ostomy challenges ostomy stigma, and encourages others to do the same. New Media & Society. 2014; 18:(2)220-238 https://doi.org/10.1177%2F1461444814541943

Grant M, McMullen CK, Altschuler A Gender differences in quality of life among long-term colorectal cancer survivors with ostomies. Oncol Nurs Forum. 2011; 38:(5)587-596 https://doi.org/10.1188/11.onf.587-596

James-Reid S, Bain K, Hansen AS, Vendelbo G, Droste W, Colwell J. Creating consensus-based practice guidelines with 2000 nurses. Br J Nurs. 2019; 28:(22)S18-S25 https://doi.org/10.12968/bjon.2019.28.22.s18

Jansen F, van Uden-Kraan CF, Braakman JA, van Keizerswaard PM, Witte BI, Verdonck-de Leeuw IM. A mixed-method study on the generic and ostomy-specific quality of life of cancer and non-cancer ostomy patients. Support Care Cancer. 2015; 23:(6)1689-1697 https://doi.org/10.1007/s00520-014-2528-1

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)883-885 https://doi.org/10.1111/j.1445-2197.2007.04265.x

Meisner S, Lehur PA, Moran B, Martins L, Jemec GBE. Peristomal skin complications are common, expensive, and difficult to manage: a population based cost modeling study. PLoS One. 2012; 7:(5) https://doi.org/10.1371/journal.pone.0037813

Metcalf C. Stoma care: empowering patients through teaching practical skills. Br J Nurs. 1999; 8:(9)593-600 https://doi.org/10.12968/bjon.1999.8.9.6621

Müller C, Bergmann M, Stift A Restoration of intestinal continuity after stoma formation for Crohn's disease in the era of biological therapy: a retrospective cohort study. Wien Klin Wochenschr. 2020; 132:(1-2)12-18 https://doi.org/10.1007/s00508-019-01586-9

Nafees B, Størling ZM, Hindsberger C, Lloyd A. The ostomy leak impact tool: development and validation of a new patient-reported tool to measure the burden of leakage in ostomy device users. Health Qual Life Outcomes. 2018; 16:(1) https://doi.org/10.1186/s12955-018-1054-0

Nybaek H, Jemec GBE. Skin problems in stoma patients. J Eur Acad Dermatol Venereol. 2010; 24:(3)249-257 https://doi.org/10.1111/j.1468-3083.2010.03566.x

O'Connor G. Teaching stoma-management skills: the importance of self-care. Br J Nurs. 2005; 14:(6)320-324 https://doi.org/10.12968/bjon.2005.14.6.17800

Pieper B, Mikols C. Predischarge and postdischarge concerns of persons with an ostomy. J Wound Ostomy Continence Nurs. 1996; 23:(2)105-109

Porrett T, Novakova S, Schmitz K, Klimekova E, Aaes H. Leakage and ostomy appliances: results from a large-scale, open-label study in clinical practice. Gastrointestinal Nursing. 2011; 9:19-23 https://doi.org/10.12968/gasn.2011.9.Sup2.19

Qureshi A, Cunningham J, Hemandas A. Emergency stomas; should non-colorectal surgeons be doing it?. Gastroenterol Hepatol Bed Bench. 2018; 11:(4)306-312

Ratliff CR. Factors related to ostomy leakage in the community setting. J Wound Ostomy Continence Nurs. 2014; 41:(3)249-253 https://doi.org/10.1097/won.0000000000000017

Richbourg L, Thorpe JM, Rapp CG. Difficulties experienced by the ostomate after hospital discharge. J Wound Ostomy Continence Nurs. 2007; 34:(1)70-79 https://doi.org/10.1097/00152192-200701000-00011

Rolstad BS, Erwin-Toth PL. Peristomal skin complications: prevention and management. Ostomy Wound Manag. 2004; 50:(9)68-77

Salvadalena G. Incidence of complications of the stoma and peristomal skin among individuals with colostomy, ileostomy, and urostomy: a systematic review. J Wound Ostomy Continence Nurs. 2008; 35:(6)596-607 https://doi.org/10.1097/01.won.0000341473.86932.89

Scheidbach H, Ptok H, Kose D Palliative stoma creation: comparison of laparoscopic vs conventional procedures. Langenbecks Arch Surg. 2009; 394:(2)371-374 https://doi.org/10.1007/s00423-007-0220-3

Simmons KL, Smith JA, Bobb KA, Liles LLM. Adjustment to colostomy: stoma acceptance, stoma care self-efficacy and interpersonal relationships. J Adv Nurs. 2007; 60:(6)627-635 https://doi.org/10.1111/j.1365-2648.2007.04446.x

Strong SA. Common chronic complications following inflammatory bowel disease surgery. Gastroenterol Hepatol (N Y). 2017; 13:(4)234-237

United Ostomy Associations of America. Living with an ostomy. 2018. https://tinyurl.com/2p83p6cw (accessed 31 March 2022)

Voegeli D, Karlsmark T, Eddes EH Factors influencing the incidence of peristomal skin complications: evidence from a multinational survey on living with a stoma. Gastrointestinal Nursing. 2020; 18:S31-S38 https://doi.org/10.12968/gasn.2020.18.Sup4.S31

Challenges faced by people with a stoma: peristomal body profile risk factors and leakage

07 April 2022
14 min read
Volume 31 · Issue 7

Abstract

Aim:

The Ostomy Life Study 2019 aimed to obtain a better understanding of the challenges faced by people with stoma.

Methods:

Online survey with participants from 17 countries.

Findings:

Of the 54 614 individuals invited to take part, 5187 responded; 62% of the respondents avoided physical and social activities because of their stoma and 37% had never consulted their stoma care nurse to have the fit of their stoma product checked. In a subgroup receiving questions on leakage (n=4209), output under the baseplate and leakage onto clothes were experienced within the previous month by 76% and 26% of respondents, respectively. Higher chance of leakage was associated with an irregular stoma shape and peristomal body profile; a stoma level at or below the skin surface; and the presence of creases, folds and other changes in the peristomal area.

Conclusion:

Leakage and access to a stoma care nurse to provide the necessary care and guidance remain important concerns for individuals with a stoma.

Up to 1 million people in the USA and approximately 700 000 in Europe live with a stoma (Eucomed Medical Technology, 2012; United Ostomy Associations of America, 2018). An intestinal stoma is the result of a surgical procedure undertaken to eradicate disease and/or relieve symptoms in patients with colorectal and/or bladder cancer, Crohn's disease, ulcerative colitis, and other diseases affecting the bowel (Strong, 2017; Qureshi et al, 2018; Müller et al, 2020). Other conditions that may require the formation of a stoma include diverticulitis, familial polyposis and traumatic injuries (Burch, 2005). Stoma creation is usually a life-changing event (Scheidbach et al, 2009), requiring physical adjustments with accompanying emotional, social, and psychological effects (Brown and Randle, 2005). Individuals may adapt differently to these effects based on their stoma type, age, gender and other factors (Ma et al, 2007; Salvadalena, 2008; Grant et al, 2011; Danielsen, 2013). Particular concerns include peristomal skin problems, daily activity limitation, inability to participate in sporting or social activities, increased awareness of body image, and fear of leakage and odour (Pieper and Mikols, 1996; Danielsen, 2013). A previous survey found that 76% of the 4138 participants had experienced leakage over 6 months, while 91% worried about leakage (Claessens et al, 2015). Leakage of stomal output onto the skin can cause peristomal skin complications, resulting in greater use of stoma accessories and more frequent contact with health professionals, which subsequently increase healthcare costs (Meisner et al, 2012; Voegeli et al, 2020).

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