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.
Although many patients may find the current established follow-up of an average of three or four stoma and pouch nurse reviews in the first 2 to 3 months following stoma formation sufficient, many patients report that they needed more support, especially in those crucial first few months. Furthermore, many patients also report that they would have preferred to be seen in the comfort of their homes more often, although, depending on where they live, they may be asked to attend community clinic venues instead.
This post-discharge period often makes patients feel vulnerable and may lead to feelings of abandonment and having unmet needs. Poorly managed symptoms and complications elevate readmission rates, with significant numbers of patients readmitted within 3 to 4 months after surgery (Tyler et al, 2014; Justiniano et al, 2018). These recurrent hospital visits not only place undue stress on patients but also strain healthcare resources.
Common gaps in stoma care
The following is an exploration of some of the most common gaps in care faced by stoma and ileoanal pouch patients.
Frequency of follow-ups
Community stoma and pouch nurses are invaluable support for patients after stoma and ileoanal pouch formation. They are often their key workers and first point of contact, relying on them for queries related to their surgery, pain, diet and hydration, and everything in between. However, with more than 200 000 ostomates and more than 5000 ileoanal pouch patients in the UK, the ever-growing workload of stoma and pouch nurses does not allow for very frequent home visits or clinic appointments (Association of Coloproctology of Great Britain and Ireland, 2017; Burch, 2021).
Additionally, service provision varies across the UK, with some places having more resources than others. This inevitably leaves many patients receiving limited care, or at least not as many visits as they feel they need. In some cases, ostomy and ileoanal pouch patients may not inform their nurses of problems because they do not want to bother them, which unfortunately may lead to shortcomings in providing the consistent monitoring necessary for addressing evolving complications and helping patients adapt to life with a stoma or ileoanal pouch.
Many areas operate a policy that, after the initial few months of follow-up, these appointments stop and it is left to the patients to contact the service through unofficial ‘patient-initiated follow-ups’. In this way, patients are no longer seen in routine follow-ups and are told to contact the service if they have any concerns. Unfortunately, this may result in some patients never contacting the service and becoming what is known as ‘lost to follow-up ostomates and pouch patients’ or patients who may not have accessed a stoma or pouch care service for years and sometimes decades. All of this often leads to a poorer quality of life due to ongoing chronic complications that are left untreated as the patients may believe this is their new normal. Patients who do not see their stoma or pouch nurse at least once or twice a year tend to use outdated products, which can lead to an increase in the cost of health care. This is why regular reviews are needed; these are patients with chronic conditions that require life-long support (Bowles et al, 2022).
Lack of out-of-hours services
Patients often struggle to find professional support outside of standard working hours. Without round-the-clock access to support, urgent concerns may go unmanaged, contributing to preventable hospital admissions or prolonged distress. Although these services may not be needed always and by everyone, many patients, especially in the first few months after their surgery, struggle to determine what requires urgent attention and whether they should go to an emergency department or wait and manage complications conservatively. Anecdotal patient and stoma nurse reports suggest that having access to their stoma nurses 7 days a week, including evenings, weekends and public holidays, is likely to prevent them from going to hospital emergency departments, as these nurses are often best placed to advise them on managing complications. Considering the significant readmittance numbers in the first 90-120 days following surgery, it is reasonable to consider the potential of avoided admissions if support is available 7 days a week.
Assistance in adjusting to life after surgery
Adjusting to life after surgery often triggers significant emotional challenges, including anxiety, depression and feelings of inadequacy. Many patients find that professional psychological support is either unavailable or insufficiently integrated into their post-discharge care plans. Coping with lifestyle changes, such as managing a stoma, bowel adaptation after ileoanal pouch surgery, or adapting dietary habits, requires tailored guidance. A lack of practical advice and understanding from health professionals can hinder patients' confidence and autonomy. Although stoma and pouch care nurses support patients with this aspect of their care, patients often mistakenly believe that they should only contact their stoma nurse if they have problems with their stoma or the stoma bag, or their ileoanal pouch, but not necessarily with issues relating to their quality of life or their physical or mental health. It is fundamental that more is done to ensure that patients are aware that stoma and pouch care nurses can help with these issues and know when and how to access services they need.
Patients may be unsure what they can and cannot do, especially once back to their everyday routines, including what exercises are acceptable and whether they should avoid exercise altogether. Many patients will have received this information before surgery, but have forgotten what they have been told once they feel ready to be more active. However, this may be several months after surgery and may mean that they have been discharged from routine follow-up. This is why it is so important that they have regular catch-ups with their stoma and pouch nurses, to ensure they feel supported and able to ask questions.
Guidance on intimacy, sexuality and pregnancy
The impact of stoma or ileoanal pouch surgery on body image, intimacy, and relationships is profound, yet these topics are often overlooked during follow-up consultations. Patients frequently report feeling uncomfortable bringing up these sensitive issues without proactive professional engagement. Some staff do not feel able to explore these topics because they find them difficult. However, patients' feedback highlights that services that are proactive and open towards sexuality and intimacy topics, and have higher sensitivity to non-clinical concerns, such as psychological issues, intimacy and pregnancy, make them feel better supported. By addressing these often-overlooked aspects of recovery, nursing care can foster a sense of dignity and wholeness, reminding patients that they are more than their medical condition.
Bridging the gap with specialist nursing services
It is clear that providing additional specialist community nursing services could lead to more comprehensive and accessible support networks for patients. A service that operates both remotely and in person is one solution to meeting patients' unmet need. Such services could guarantee patients access to care 7 days a week, including evenings and public holidays. This type of service provision could improve quality of life, facilitate smoother post-surgical adaptation, and reduce hospital readmissions.
Through telephone or video consultations, patients could receive pre- and postoperative counselling, assistance with managing complications, diet and lifestyle guidance, psychosocial support, advice on medications and supplements, and advice on sensitive topics such as intimacy, sexuality and pregnancy. This multifaceted approach ensures that both medical and emotional dimensions of recovery are prioritised. Having specialist services accessible 365 days a year offers patients immediate support. Whether addressing particular concerns or providing routine reassurance, an advice line service would be an essential touchpoint for patients navigating life after surgery.
If an urgent situation occurs, in-person reviews and a rapid response mechanism could enable a swift intervention, preventing complications from escalating. This proactive model could reduce the burden on emergency services while providing patients with a sense of security. Bringing care directly into patients' homes allows for a deeper understanding of their daily living challenges. Nurses could promptly identify and address needs, manage complications effectively, and recommend solutions tailored to individual lifestyles. By proactively managing complications and enhancing patient confidence, such an approach could potentially not only reduce the financial burden on the healthcare system but also alleviate considerable stress for patients and their families.
Addressing the broader implications
Broader systemic changes are necessary to better support stoma and ileoanal pouch patients. Currently, healthcare systems prioritise acute care while often overlooking the long-term, holistic needs of individuals adjusting to life after surgery (Bowles et al, 2022). This oversight perpetuates a reactive model of care, where readmissions are treated as inevitabilities rather than preventable occurrences. A shift towards a patient-centred, preventive approach is essential. For this to be easily implemented, a reasonable approach could be to aim to have more community stoma and pouch nurses, as specialist nursing services have been found to lead to improved patient outcomes but also optimised resource allocation. Scaling up such models could have transformative implications for the healthcare landscape, with a focus on investing in accessible and preventive care.
There are already some non-NHS services providing similar services, available 365 days a year, with rapid response and out-of-hours advice lines. And preliminary qualitative feedback from patients paints a fuller picture of their value, where many have expressed profound relief at having a reliable, empathetic point of contact throughout their recovery. The reassurance of knowing that professional help is just a phone call or a home visit away has empowered patients to navigate challenges with greater confidence.
As healthcare systems worldwide grapple with rising demand and limited resources, initiatives such as this offer a blueprint for addressing complex patient needs efficiently. Therefore, it is essential that similar services are implemented across the country, whether supported by NHS and social care, or outsourced to non-NHS entities. This approach ensures that all patients receive timely and effective care, leveraging both public and private sector resources to address current healthcare challenges. By prioritising empathy, accessibility and innovation, we can reimagine post-surgical care and ensure that no patient feels left behind.