Oxenham Julie
Clinical Nurse Specialist, Stoma Care, Hollister Ltd.
Br J Nurs. 2016;25(5):S14-9. doi: 10.12968/bjon.2016.25.5.S14.
Mary (pseudonym) is a 30-year-old woman who underwent a urinary diversion and formation of an ileal conduit/urostomy (urinary stoma) due to the formation of multiple bladder diverticula, which caused micturition difficulties and recurrent urinary tract infections with associated pain and discomfort. The bladder diverticula were caused by Ehlers-Danlos syndrome (EDS), a hereditary disorder of the connective tissue or, particulary, defective collagen. Surgical intervention in patients with EDS is prone to complications due to poor wound healing, including issues of dehiscence, postoperative bleeding and poor uptake of anaesthesia and analgesia. After an initial presentation of the syndrome of EDS and Mary's history, this article offers a reflective account (informed by Gibbs' Reflective Cycle) and illustrates the complexities of caring for an individual with EDS who undergoes stoma formation. The author, a stoma care nurse, demonstrates how using purposeful reflection resulted in better understanding and awareness of caring for an individual with a rare syndrome and the nursing challenges this presented.
玛丽（化名）是一名30岁女性，因多发性膀胱憩室形成导致排尿困难以及反复出现的尿路感染并伴有疼痛和不适，接受了尿流改道和回肠导管/尿造口术（泌尿造口）。膀胱憩室由埃勒斯-当洛综合征（EDS）引起，这是一种结缔组织遗传性疾病，尤其是胶原蛋白存在缺陷。由于伤口愈合不良，EDS患者的手术干预容易出现并发症，包括伤口裂开、术后出血以及麻醉和镇痛效果不佳等问题。在介绍了EDS综合征及玛丽的病史后，本文提供了一篇反思性叙述（以吉布斯反思循环为依据），并阐述了护理一名接受造口术的EDS患者的复杂性。作者是一名造口护理护士，展示了如何通过有目的的反思更好地理解和认识护理一名患有罕见综合征的患者以及由此带来的护理挑战。
