In the UK, an estimated 160000–2050000 people are living with a stoma and 21000 individuals are thought to require stoma formation surgery each year (Kettle, 2019; Colostomy UK, 2022). The age of those living with a stoma ranges from newborns to older adults. Depending on the reason for its formation, the stoma may be temporary or lifelong.
Everyone can acknowledge the benefits of exercise on physical and mental health (NHS, 2021) but for someone with a stoma maintaining a healthy weight and skeletal muscle strength can be even more important (Nakagawa et al, 2020). It helps to reduce other comorbidities and plays a role in parastomal hernia prevention (Hubbard et al, 2020). Currently, although there are recommendations for prevention programmes in the literature (Osborne et al, 2018), only surgical options are considered for parastomal hernia management, rather than self-management through exercise (Taylor et al, 2023). No formal consensus exists on exercising with a stoma or hernia (Association of Coloproctology of Great Britain and Ireland Parastomal Hernia Group, 2018).
Need for best practice recommendations
The role of the specialist stoma care/colorectal nurse is to assess and provide both stoma and holistic care for any patient going through surgery resulting in the formation of a stoma. This includes education and support on all aspects of life with a stoma, including nutrition, lifestyle and exercise (Association of Stoma Care Nurses UK (ASCN) UK, 2016).
However, feedback from nurses (and most health professionals, including surgeons and physiotherapists) indicates that they feel ill equipped to provide this specialist information in an accurate, evidence-based and individualised way, and there is no consensus on approach (Loor, 2020). Nurses express they are not formally trained in exercise yet are still expected to advise patients. The information given to patients is often limited to personal knowledge or information gleaned from colleagues, and may be biased by nurses' experiences. Fundamentally, very little research has been undertaken in this area, which is compounded by conflicting opinions about what is a safe and appropriate type and level of physical activity for individuals living with a stoma.
There is no formal published consensus evidence about exercise after stoma surgery anywhere globally. Not only does this place anyone providing care to an individual with a stoma in a challenging situation but it also highlights a significant gap in stoma care education and the standards of care provided to patients.
As people become increasingly well educated about their health and involved in decisions about their care, they also demand a better quality of life (Hubbard et al, 2017). Therefore, health professionals need to rise to meet this need, become better educated and refer to guidelines to improve the care they give to patients, specifically about exercise and physical activity. One surgeon the authors spoke to admitted that they felt that they ‘waffle’ their way through answering questions about exercise, and health professionals often provide general and cautious information. Examples are noted in Box 1. These are conflicting and confusing. Practitioners can and must do so much better than this.
Box 1.Examples of inconsistent and poor exercise advice given by health professionals
- Don't lift anything heavy, build up slowly and listen to your body
- Rest for 6 weeks, then you can go back to normal
- Don't lift anything heavier than a kettle and don't exercise for 12 weeks
- Do what you like – there are no limits
When searching Google for ‘exercise after stoma surgery’, a patient will find a confusing and contradictory range of articles from both reliable and untrustworthy sources. Examples of search results are noted in Box 2. These leave patients confused and likely to engage in potentially inappropriate activities or, worse, to become completely inactive (Saunders and Brunet, 2019; Nakagawa et al, 2020; Bladder and Bowel Community, 2024; Fittleworth, 2024; NHS, 2024).
Box 2.Examples of inconsistent and poor exercise advice found via a Google search
- You must wait until 12 weeks before resuming exercise
- Be cautious about not overexerting yourself
- You must do core exercises to prevent a hernia
- You must not go back to lifting weights for 3 months
- People with stomas can do anything they want
- Yoga and pilates are ideal for ostomates
- You must not do any abdominal exercises in case you get a hernia
Published research indicates that people who have had stoma surgery become less active. A study by Russell (2017) found that more than 56% of patients self-reported being much less active than they had been before their surgery. Similar findings by Beeken et al (2019) reported that 56% of patients thought their physical activity levels were worse after stoma formation.
It appears that most people living with a stoma are also less active than the general population. A study from Japan (Nakagawa et al, 2020) showed that colon cancer patients with a stoma had significantly worse physical fitness, especially lower limb strength, when compared with those among a healthy population.
UK research (Russell, 2017) found that 90% of people living with a stoma neither exercised enough for good health nor met the 150 minutes per week recommended by guidelines. Most concerning, a qualitative study in Canada (Saunders and Brunet, 2019) found that the majority of patients felt that their previous levels of physical activity could never be achieved now that they were living with a stoma.
All authors of these articles, without exception, recommended better education, programmes and support for people going through stoma formation to empower them, and to encourage physical activity and exercise. This information should ideally come from the stoma care nurse, surgeon and the team working with the patient. In addition, practitioners know that people want to be given information and advice. Research undertaken by Russell (2017), found that 94% of patients wished to be given information about exercise after their surgery. This was corroborated by Beeken et al (2019), who found more than 90% of people wanted lifestyle advice about diet and exercise.
Without formal guidance, any advice provided runs the risk of being vague, contradictory and inaccurate. To respond to this desperate need an expert working group was set up to develop best practice recommendations in collaboration with ASCN UK; this panel includes surgeons, physiotherapists, exercise physiologists, specialist nurses and people living with a stoma. These will be the first formal published consensus recommendations for exercise for individuals going through stoma formation anywhere in the world. The EXercise and Physical Activity after Stoma Surgery (EXPASS) project is now under way, and it is hoped that recommendations will be published by the end of 2024.
Patient and practitioner experiences
Sarah Russell, project lead, clinical exercise specialist, lived experience of a stoma since 2010
When I had my stoma surgery in 2010, I was shocked to find that nobody could advise me on how to exercise afterwards. I had worked in the fitness industry in a clinical role for 25 years, had never encountered a stoma and did not know the implications of exercising with one. I naively expected some rehabilitation programme (similar to cardiac rehab), yet it was not forthcoming. After five successive abdominal surgeries over 18 months, I was left to figure it out on my own.
As an exercise specialist, I could do that – but I did wonder how people without exercise training managed. I took to clinical pilates and worked through exercises, modifying them as needed and figuring out a programme. I remember a friend at the time said,‘I hope you're recording this as we'll need it one day’, and she was right.
Since then, I have been on a mission to learn as much as possible, to carry out research, develop programmes, educate nurses and other health professionals, and to support and train people living with a stoma. I have written a book about bowel cancer and exercise (Russell, 2019) and created a Royal College of Nursing-accredited course through Convatec for stoma care nurses about exercise, which I've delivered around the world (me+recovery; https://tinyurl.com/mpxvnfh).
But we constantly face the same feedback: ‘Where's the evidence?’,‘Where's the consensus?’ It has become evident that a more robust and collective publication is needed to guide health professionals and patients through this journey. Three fundamental questions need to be asked:
- What can I do?
- When can I do it?
- What should I avoid?
There is a need for a framework that is structured yet empowering. People need structure and steps, but also to be given the permission and skills to listen to their bodies and work out what is best for them as individuals.
On my 14-year journey through fitness with my stoma, I've learnt so much from my experience in pilates, weight training, running and cycling, and from working with thousands of patients and nurses in my practice all over the world, in person and virtually.
My thoughts on parastomal hernia prevention and management have changed and evolved. I've realised the nuance and importance of breathing and the correct core and pelvic floor work.
The interplay between the physiological, psychological and social aspects of stoma surgery cannot be underestimated, and practitioners must take a truly holistic and individual approach when working with people going through stoma surgery.
I am genuinely excited about this project and feel these peer-reviewed, consensus, best practice recommendations will be game changers for stoma care worldwide.
Wendy Osborne, specialist stoma care nurse
Having worked within the specialty of gastrointestinal nursing for over 30 years, I have seen significant changes and developments in surgical procedures, healthcare services and people's attitudes. The length of stay in hospital following abdominal surgery requiring the formation of a stoma has reduced dramatically from an average of more than 2 weeks to 5 days. This is because evolutionary research improves surgical techniques, anaesthetics and the understanding of the benefits of movement and diet within the postoperative period.
The consequence of reduced length of stay post surgery has led to less contact time with specialist nurses and physiotherapists. Previously, patients would have routinely seen their specialist stoma care nurse (SSCN) throughout their inpatient stay, enabling reiteration of education and tailored advice disseminated in smaller, bite-sized amounts. With less time in hospital, more information needs to be concentrated into the shorter time available.
It would also have been routine for a physiotherapist to meet a patient after major abdominal surgery 30 years ago, providing advice on movement, getting in and out of bed, coughing and undertaking physical activity, but now only those with other complex medical conditions will be referred to a physiotherapist. Not only the shorter time in the hospital to see the specialist nurse, but also the withdrawal of routine physiotherapy assessments have led to an unintended gap in specialist advice. SSCNs and other nurses are eager to meet patients' need for advice on safe physical activity following abdominal surgery but require more evidence and access to such information. SSCNs have reached out to physiotherapists and personal trainers to gather information, with the welcome support of stoma care manufacturers, to provide literature and guidance on exercise. However, as mentioned above, this was limited and disparate, focused mainly on the postoperative period and lacked tailored information for long-term advice.
As an SSCN, knowing that one of the highest complications of a stoma is parastomal hernia (Thompson and Trainor, 2007; North, 2014) and understanding the positive impact of physical activity on physiological and psychological wellbeing led me to becoming involved in this project. As a committee member of the ASCN UK who has been instrumental in writing national guidelines for stoma care, I was eager to evolve and develop guidance on physical activity and exercise for health professionals and individuals living with a stoma.
Kerry Archer, senior cancer specialist physiotherapist
My interest in stoma rehabilitation initially came about when I took the role of lead physiotherapist at an innovative exercise referral service for cancer patients set up by Harrogate and District NHS Trust. I was a highly experienced physiotherapist who had worked on surgical wards, but stoma rehabilitation had never been highlighted until I started to specialise in exercise within cancer care.
After several patients had come to me after stoma surgery and asked, ‘What can I do and when?’, I realised I didn't have the answers. So I set out on a mission to find out. At around this time, I met Sarah Russell during a meeting of physiotherapists working in cancer and exercise. Since that initial meeting, we have gone on to work closely together, discussing our shared desire to put together some formal recommendations to support patients and health professionals in preparing for stoma surgery and rehabilitation after surgery and beyond.
There is a common misconception that physiotherapists are exercise experts. Although some physiotherapists have undertaken additional exercise training, our initial education teaches us to support patients with early movement (ie getting in and out of bed, sit to stand and mobility). Few physiotherapists will have the expertise to appropriately support someone with a stoma – the role of stoma physiotherapist does not exist.
Since starting in my role within the exercise referral service, I have seen several patients before and after stoma formation surgery and, with the support from the work that Sarah Russell has already done and my additional training, which has included levels 1 and 2 of the Australian Physiotherapy and Pilates Institute training, I have successfully set up a specific prehab/rehab programme for patients having stoma surgery who are referred to our service. This includes videos of exercises they can access on our service website and an assessment with me soon after surgery.
These recommendations will help to support all health professionals and provide a one-stop shop to ensure that each patient receiving a stoma is provided with consistent advice.
EXPASS progress
The EXPASS project is making progress and has had several achievements.
At the ASCN UK national conference in 2022, Kerry Archer and Sarah Russell presented a keynote speech on the need for recommendations about exercise after stoma surgery. Conversations started with ASCN UK on how this could be done.
The Parastomal Hernia Prevention, Assessment, and Management: Canadian Best Practice Recommendations were published in 2023 (Nurses Specialized in Wound, Ostomy and Continence Canada (NSWOCC), 2023), and this led Sarah Russell to meet with John Gregory (the technical writer and project manager of the NSWOCC recommendations). He agreed to take the same role for the ASCN UK project.
During 2023, the expert panel was formed. Panel members are giving their time voluntarily. The authors reached out to industry and secured funding, and are grateful to the organisations that are now supporting this work.
The project is now under way, with ongoing meetings, literature reviews and scoping. Its scope and protocol are being registered according to the PRISMA-ScR checklist (Tricco et al, 2018).
The best practice recommendations will be subjected to a Delphi consensus methodology (Niederberger et al, 2021) with an 80% consensus level. The draft of these will be peer reviewed.
At the World Council of Enterostomal Therapists/ASCN UK Joint Congress in Glasgow in 2024 the authors will present the initial recommendations. Complete publication is anticipated by the end of 2024.
Scope of the EXPASS best practice recommendations
The formal title of the EXPASS document will be Best Practice Recommendations for Exercise and Physical Activity Before and After Stoma Formation.
There is very little research and evidence in this area so the recommendations will be based on a scoping review, clinical experience and expert opinion. The document will be peer reviewed before publication.
For the recommendations to be high quality and practical, the expert panel must remain focused. This is a vast topic, so the scope must be kept as narrow as possible; the document cannot cover every eventuality. If there are any exclusions, they are not intentional, and the panel intends to address them later.
The recommendations will address the needs of adults aged ≥16 years, and cover parastomal and perineal hernia risk and management. They will cover physical activity and exercise after stoma formation. Most sports and activities will be covered, including up to elite sports level.
The recommendations will cover prehabilitation and preparation for surgery and rehabilitation, but not reversal, hernia repair or internal pouch formation.
Challenges
Several issues need to be considered:
- The wide variety of stoma surgeries, complexities and medical conditions leading to stoma formation
- The wide range of age, health status and fitness of the individuals having surgery
- The lack of research and evidence.
The recommendations need to be broad enough to consider all variations, but specific enough to be useful.
Approach and promotion
The document will take an individual, holistic and patient-centred approach to empowerment and education using a biopsychosocial approach as described by Wade (2017). In addition, the recommendations will provide health professionals with the skills to answer the core questions of ‘what, when and how?’ regarding exercise and physical activity, as well as signposting to further reading and education.
The guidelines are aimed at health professionals, including nurses, physiotherapists, surgeons and anyone in an allied professional role working in acute care with patients, as well as at fitness instructors, pilates teachers and personal trainers. They will be written in such a way that individuals with a stoma can access them and apply the information to themselves.
Initially, the document will be published on the ASCN UK website, and printed copies will also be available. The authors plan to run seminars online and in-person to disseminate the information and answer questions. Presentations will be given by the expert working group at relevant conferences.
Conclusion
These physical activity and exercise recommendations will fill a significant gap in stoma care practice and support selfmanagement. They will provide all health professionals with a reliable reference and resources to support and educate their patients about physical activity and exercise.
Although the expert panel is based in the UK and ASCN UK will publish the EXPASS recommendations, the project group will collaborate with and support other international groups and organisations.
Specifically, the recommendations will provide:
- Consistency in the information/advice given to patients by health professionals with no ambiguity
- A straightforward, step-by-step process that can be used by a wide range of professionals who interact with people with a stoma to safely prepare them for surgery and support them in their recovery and beyond
- Health professionals with confidence that they are giving the correct advice
- Patients with trusted information, which the health professionals supporting them can also refer to.
Ultimately, health professionals will feel more confident and informed, and patients will be more empowered and enabled to be active. Practitioners must all focus on a patient's whole health, not just their stoma, and remember the significant benefits of exercise for health and wellbeing.
If you have any questions or comments or want more information, do not hesitate to contact project lead Sarah Russell at sarah@sarah-russell.co.uk
KEY POINTS
- Exercise is recommended for all patients after stoma surgery, but no formal consensus recommendations exist
- Exercise can play a role in the prevention and management of parastomal hernia, which is currently treated by surgery
- Most people living with a stoma feel they cannot be as active as they were previously. Health professionals can improve their quality of life with encouraging and positive advice and support about exercise
- Patients receive confusing and conflicting advice about exercise after stoma surgery, so recommendations are being drawn up to provide standardisation and guidance for health professionals
CPD reflective questions
- Consider the advice you give to patients after stoma surgery. Do you know the evidence behind it and if it is correct? Do you give the same advice to every patient? How could you improve this information and support?
- Do you know the World Health Organization recommendations for exercise and physical activity that all patients are advised to meet? Consider researching them if you are unsure and share this information with your colleagues
- Are you aware of the Association of Stoma Care Nurses UK recommendation that patients can start core exercises within 3-5 days of surgery? Do you know which exercises or trusted information you can suggest? Consider training in this or liaising with an exercise professional or physiotherapist to improve your knowledge and skill