A cancer diagnosis is an emotionally and physically overwhelming experience. For patients with stomas, this journey is further complicated by unique challenges that demand specialist care and attention. The presence of a stoma introduces additional layers of complexity, making the role of a specialist stoma nurse indispensable. Their expertise not only helps in preventing severe complications but also ensures timely management of issues, empowering patients to navigate their treatment with confidence and dignity. This article explores common side-effects of systemic anti-cancer therapy and how these complications specifically impact stoma care, with specialist-tailored management strategies for each stoma type.

Ileal pouch irrigation is a developing technique used to help patients with bowel dysfunction after restorative proctocolectomy and ileal pouch-anal anastomosis. It involves flushing the pouch with lukewarm water to support more predictable bowel movements and reduce symptoms like urgency, frequency, incontinence, bloating, and inflammation. This method may improve quality of life, confidence, and emotional wellbeing. The article outlines a structured approach to implementing irrigation safely, with case studies showing meaningful improvements in daily functioning and patient satisfaction.

Abstract

Patients with a stoma require support from multidisciplinary teams. However, there are often misconceptions about the care these individuals need and who is responsible for providing this. Healthcare professionals need a good understanding of stoma care and be able to support these patients. Stoma nurses are clinical nurse specialists, responsible for the long-term care of patients with a stoma. Part of this role is to educate members of the multidisciplinary team across primary, secondary and community care. This article describes a quality improvement project implemented by the authors to enhance nursing skills in a hospital setting, to ensure that patients with a stoma are well supported at this very vulnerable stage of their journey. This involved the implementation of enhanced training for ward nurses, including the use of digital technology and simulation learning.

Aims: The primary aim was to develop a patient-centred core outcome set (COS) for interventional studies in patients with pouch anal and vaginal fistula (PAVF).
Method: PAVFCOS was developed using the methodology outlined by the Core Outcome Measures in Effectiveness Trials (COMET). Systematic review and qualitative patient interviews produced a long list of candidate outcomes. An online Delphi exercise was conducted with stakeholders to prioritise and shortlist outcomes. A consensus meeting of patients and clinicians ratified the final core outcome set.
Results: A systematic review of the literature and 14 qualitative patient interviews produced a long list of 99 outcomes. These were reduced to 46 outcomes and subjected to two rounds of a Delphi exercise with 70 participants, including patients (45%), colorectal surgeons (31%), radiologists (6%), gastroenterologists (11%) and pouch specialist nurses (7%). Thirty-six outcomes were discussed in a consensus meeting of seven clinicians and seven patients. Seven core outcomes were selected for inclusion: global assessment of continence, pain related to fistula and surrounding area, impact on quality of life of fistula discharge, fistula healing (clinical and radiological), new fistula or abscess, need for rescue intervention (minor or major) and global quality-of-life assessment.
Conclusion: PAVFCOS is the first to establish outcomes that are important to patients with pouch anal and vaginal fistula. PAVFCOS should be used in interventional studies to introduce much-needed standardisation of outcome reporting in this challenging condition.

The journey of stoma and ileoanal pouch patients, following discharge, requires ongoing support as they accept their new elimination model and the loss of what is considered ‘normal evacuation’. Although a lot is done to support these patients, often patients' feedback reveals significant disparities in care across different areas of the country, as well as disparities between private and public care, with some significant gaps in healthcare support. Despite the complex physical and emotional adjustments these patients face, current systems provide professional care that may not always be sufficient for everyone's individual needs, and may even be limited, especially in the critical months following discharge. This leaves some patients reliant on non-clinical resources such as support groups and online forums. Although these sources can offer camaraderie, they may lack the medical and nursing experience required to address individual needs.

COVID-19 symptoms are often perceived as respiratory only. However, recent findings have shown that gastrointestinal symptoms are being reported in a significant number of patients, ranging from 17% to more than 50%, with some studies speculating that the figure may be even higher, but that it is under-reported and overlooked. Therefore, a hypothesis was put forward that gastrointestinal symptoms related to COVID-19 may make pouch or stoma function deteriorate or even mimic pouchitis symptoms in ileoanal pouches and gastroenteritis in stoma patients; the intention was to investigate this further and to test the hypothesis. A retrospective analysis of patients with a stoma or ileoanal pouch was conducted, including those who reported having gastrointestinal symptoms following a positive COVID-19 test in the preceding 4 years (2020–2024). It was anticipated that gaining insight into this topic can help improve care for this patient group.

Urostomy patients are rare as only about 5% of ostomates have urostomies. This can prove challenging because many healthcare professionals do not have experience caring for these patients and may be unfamiliar with their specific needs. As with other ostomates, urostomy patients require specialist nurses with the expertise to provide long-term support. Care for urostomy patients may be provided by urinary diversion specialists or stoma specialist nursing. Patient-centred pathways are needed to cater for their unique needs and ensure good patient outcomes and quality of life. People with urostomy have very post-operative need needs and inadequate care may result in hospital admissions. They need specialised long-term care. It is also crucial to educate the healthcare professionals responsible for their care.

Stoma nurses possess highly specialised skills that are essential for the provision of ongoing support for patients living with stomas. This is particularly relevant in the management of stoma-related issues, as stoma nurses possess the skills to independently manage peristomal and stomal complications. Granulomas are common complications for many stoma patients. Nurses play an essential role in ensuring the correct treatment is provided or put in place. While the exact ‘how to manage’ process for granulomas at the mucocutaneous junction has been established in guidelines and protocols, there is a lack of guidelines for how to manage mucosal granulomas, which are found on the stomal spout. This article explores the available treatment options for granulomas—both at the mucocutaneous junction and on top of the stoma—and presents a case study of successful treatment of mucosal granulomas.

Colostomy patients have distinct needs that require specialised pathways for optimal care. Recognising that these needs vary, based on the type and configuration of the stoma, is crucial. Specialist nurses play a vital role in providing long-term support and expertise. While many stoma nursing services in the UK offer patient pathways, these often lack specificity for different stoma types. Tailoring pathways to colostomy patients can prevent complications, reduce hospital readmissions and enhance quality of life. Community nurses and other healthcare professionals are essential in supporting colostomy patients through individualised care. Their involvement ensures that patients receive appropriate preparation for life with a stoma and are adequately educated about their specific needs. This multidisciplinary approach fosters a comprehensive care environment, addressing both the physical and emotional aspects of living with a colostomy. By focusing on personalised care and life-long support, healthcare professionals can significantly improve patient outcomes and overall well-being.

Colostomy irrigation is a procedure that allows patients to achieve a certain degree of bowel control, and a period free of stoma effluent. It has the potential to improve quality of life, body image and confidence, and reduce patient anxiety. It may also help reduce odour and flatus, prevent/address peristomal skin irritation and alleviate constipation. Because it can reduce or eliminate the need for a colostomy bag, it may also cut expenditure on stoma appliances. However, colostomy irrigation is not offered to patients as standard. A protocol was drawn up to ensure colostomy irrigation was routinely offered to suitable patients and to provide them with a structured follow-up to ensure they were well supported throughout the first year of carrying out the procedure. Quality of life and the efficacy of colostomy irrigation can be monitored using questionnaires on these two issues. Two case studies demonstrate how patients' quality of life can improve when using colostomy irrigation as part of their stoma care routine.

Stoma patients require continuous support throughout their entire journey with a stoma. Although many Stoma Care Services across the UK offer patient follow-up pathways, there is not one unified pathway. Patients may not be prepared for life with a stoma because, depending on their stoma type, they will have specific needs, and if patients and healthcare professionals are not prepared to manage these stoma-specific needs, complications and hospital readmissions may occur, worsening patients’ outcomes and quality of life.
Ileostomy patients are known to be more likely to experience complications, including hospital readmissions, and therefore, special care should be taken when preparing these patients for life with a stoma. They should be informed and educated to prevent complications, and if this is not always possible, thye should at least be able to recognise and manage early signs and symptoms of complications. This will empower them to self-care and know when to seek medical attention.

Specialist nurses are crucial to care delivery and play a key role in stoma services. Yet, support for nurses transitioning from ward-based to specialist roles has often been suboptimal. Rali and Petya Marinova describe the innovative approaches to training specialist nurses at their stoma and pouch service to ease this transition.

Pouch care is a multidimensional branch of specialist nursing, which aims to support patients undergoing a series of stoma and pouch-forming surgeries throughout their entire peri-operative journey, from before the surgery to after discharge. Pouch nurse practitioners are highly-trained specialist nurses with specific skills, providing evidence-based practice, with ongoing research, service development, audit and education forming a part of their role, to ensure that patient care is delivered to the highest standard. The clinical expertise of pouch nurse practitioners is essential, as they must work autonomously, have first-hand knowledge of patients' needs and be able to assist them in timely manner. Defining the role of the pouch nurse practitioner contributes to raising the profile of the profession, raising awareness, and combating misinformation, all while empowering other nurses to consider pouch care as part of their career progression.

Stoma formation is a life-changing procedure and a patients' journey adjusting back to life may be very overwhelming, both physically and psychosocially. This is why it is of paramount importance that a dedicated stoma nursing team can provide life-long support for these patients. Stoma nurses are fundamental to the provision of care for these patients. They ensure that with their clinical expertise and skills, patients are well-supported to ensure their quality of life is maintained to the highest standards and hospital admissions and unnecessary appointments with other healthcare professionals are avoided. However, the role of the stoma nurse as a clinical nurse specialist is not well-defined and the lack of understanding often leads to unrealistic expectations from the multidisciplinary teams. This is why it is fundamental to define the role of the stoma nurse, to ensure that both patients and healthcare professionals have realistic expectations and understand what a unique role this is.

The article describes how one NHS Stoma and Pouch Care service maintained uninterrupted patient care throughout the COVID-19 pandemic, unlike many similar services that scaled back. Faced with rapid changes and uncertainty, the team quickly adapted by transitioning to a fully digital model, including remote work, virtual clinics, and digital resources for patients. As their hospital became a COVID hub, surgical patients were moved to private hospitals, and the nursing team had to operate across multiple sites. Despite further challenges, including relocating their base hospital, the team continued to deliver consistent care over the two-year period.

Outline the stoma patient pathway at a tertiary hospital in London, highlighting how care provision throughout the stoma journey can improve patient outcomes and reduce costs to the NHS.

Explores the successful use of an innovative stoma output absorbent cartridge to improve patients' quality of life, restore confidence, reduce anxiety, empower them to self-care and effectively manage overactive stomas during appliance change, as well as potentially avoiding delays in hospital discharge, reducing waste of stoma products, and facilitating stoma complication management procedures and training in new stoma patients.

The study reports the first protocol-based pathway for nurse-led follow-up for ileoanal pouch patients. Using validated questionnaires, suitable pouch patients were followed up in nurse-led clinics over a 12-month period then sent an online survey to report on the service they received. Overall, most patients were satisfied with the nurse-led follow-up; however, further engagement and investment in the workforce and infrastructure is required to offer sustainable services.

The COVID-19 pandemic has been one of the greatest challenges to the NHS, creating turmoil in the public health workforce and for all of those who use its services. Its immediate impact was a rapid change in how care in the NHS is planned, delivered and accessed, with no concession for stoma care services. Investment in global resources detailing COVID-19 recovery plans and the steady increase in national data related to the transmission and treatment of the virus has allowed stoma care nurses to better understand the long-term effects of the pandemic and mitigate future risk to specialist nursing services. This article describes how this crisis has provided an opportunity to radically change systems and processes in stoma care through the use of digital technology to continue interaction with patients, communicate with the multidisciplinary team and collaborate with relatives or carers, and as a platform to enhance personal development, training and education.

The aim of the book is to reinforce what patients have been told by the surgeon and stoma nurse prior to their surgery, signpost them to independently care for their stoma, make important decisions about their health and become confident in preventing and treating possible stoma complications. Moreover, this book will assist them in deciding whether it is safe to manage their stoma-related problems on their own or seek help from a healthcare professional. With the hope that with guidance from their stoma nurse and this book, they will be able to incorporate their stoma into their life fairly quickly.

A comparative study examining the significant role and responsibilities of the stoma nurse across three different healthcare systems: Italy, the Republic of Ireland, and the United Kingdom.