Physical activity and exercise after
stoma surgery: overcoming the barriers
Sarah Russell
ABSTRACT
This article presents the results from a large nationwide survey completed
in 2016 that investigated the physical health and wellbeing of people living
with stomas in the UK. In particular, the survey looked at physical activity and
exercise, general attitudes and opinions about exercise, whether or not advice
about physical activity had been received and other general questions about
parastomal hernia and quality of life. There were 2631 respondents making
it one of the largest known surveys to date. The findings were concerning
yet unsurprising, highlighting a trend toward inactivity after stoma surgery
and a fear of exercise in general. People also seem to have poor knowledge
about appropriate activities, with many suggesting that the fear of developing
a parastomal hernia is a major barrier to activity. Unsurprisingly, those who
have a stoma owing to cancer seem to fare worse, reporting even lower levels
of physical activity and worse quality of life compared to those with other
conditions. This indicates that people who have a combination of a cancer
diagnosis and also a stoma may need more specific or additional support in
the longer term. The most concerning finding, however, was that the majority
of patients could not recall being given any advice about exercise or physical
activity by their nurse or surgeon. While this survey presents some initial
findings, it raises questions for further research and work. It also highlights a
significantly neglected area in both research and support for stoma patients
and the health professionals caring for them.
Key words: Exercise Quality of life Stoma Hernia the ongoing Canadian clinical trial Colon Health and Life-
T
he benefits of regular physical activity are well
known, and leading an active lifestyle is important
for many physiological, psychosocial and health
reasons (Department of Health (DH), 2011).
There is convincing evidence that being physically
active protects against obesity and becoming overweight, as well
as reducing risk factors and chronic health conditions such as
type 2 diabetes, cancer, heart disease and stroke for people of all
ages (DH, 2011). In particular, there is strong evidence of the
link between physical activity and the prevention of colorectal
cancer. A 2009 meta-analysis found that the most physically
active people had a 24% lower risk of colon cancer than those
who were the least active (Wolin et al, 2009).
Sarah Russell, Ostomy Health and Wellbeing Specialist, ConvaTec
UK, sarah.russell@convatec.com
Accepted for publication: February 2017
S20
In general, physical inactivity is estimated to cause 3.2 million
deaths globally each year (World Health Organization, 2014)
and there are growing concerns about the level of sedentary
behaviour and the number of adults not meeting guidelines
for physical activity. DH guidelines for physical activity for the
general adult population recommend at least 150 minutes per
week of moderately intense activity, plus two sessions of muscle
strengthening exercise (Bull et al, 2010). However, in England
it is estimated that only 28% of women and 40% of men meet
these guidelines (DH, 2011). However, the consensus is that this
figure is exaggerated (based on self-reported data) and more
accurate measurements (using an accelerometer) estimate that
in reality, only 6% of men and 4% of women actually meet the
recommendations (Berkemeyer et al, 2016).
Physical activity after illness and surgery
An intervention of appropriate physical activity after illness or
surgery is important for rehabilitation and physical recovery;
preventing further decline and restoring confidence and mental
wellbeing. Specifically for colorectal cancer patients, studies
have suggested that physical activity (of greater than or equal
to 7 hours a week) could lower the risk of recurrence and
mortality by 31% (Arem et al, 2015). In addition, results from
Long Exercise Change study (CHALLENGE) will be eagerly
awaited to investigate this effect more closely (https://tinyurl.
com/hwrxeq3).
Cardiac rehabilitation programmes have been in place in
the UK for over 20 years and there is robust clinical evidence
of their effectiveness including reduced mortality, reduced re-
admission to hospital, reduced anxiety, stress and depression and
improved quality of life in the long term (Anderson et al, 2014).
The issues faced by stoma patients after surgery are similar
to those experienced by cardiac patients, and involve recovery
from major surgery, physical deconditioning, weight loss/gain,
comorbidities, lack of confidence and body image issues along
with lifestyle behaviour changes to be implemented. However
the provision of a rehabilitation intervention for stoma patients
using a similar model does not exist in the UK.
Cancer rehabilitation services (which use a similar model
2017 MA Healthcare Ltd
to traditional cardiac rehabilitation programmes) are not yet
commonplace in the UK, but where they do exist they are
proving to have a positive effect on physical functioning,
cardiovascular fitness, mood and quality of life (White, 2012).
Guidelines from both Macmillan (2016) and the American
British Journal of Nursing, 2017 (Stoma Supplement), Vol 26, No 5
 College of Sport Medicine (ACSM) (Schmitz et al, 2010)
recommend that cancer patients should engage in appropriate
physical activity, both during treatment and afterwards and
gradually build up to the physical activity guidelines for the
general population.
Research has found benefits to include preventing further
deconditioning and muscle atrophy, restoring confidence,
managing symptoms of treatment (such as fatigue, lymphoedema,
weight changes) and improving mental wellbeing. The
roundtable concluded that exercise training is safe during and
after cancer treatments and results in improvements in physical
functioning, quality of life, and cancer-related fatigue in several
cancer survivor groups. It recommended:
That cancer survivors follow the 2008 Physical
Activity Guidelines for Americans, with specific
exercise programming adaptations based on
disease and treatment-related adverse effects.
The advice to avoid inactivity, even in cancer
patients with existing disease or undergoing
difficult treatments, is likely helpful.
Schmitz et al, 2010: 1409
There are many benefits for stoma patients who participate
in a cancer rehabilitation programme if feasible and available,
but this would only capture stoma patients who have a diagnosis
of cancer, leaving other patients with other conditions (such
as inflammatory bowel disease (IBD), diverticular disease etc)
without support.
Abdominal wall and parastomal hernia
Abdominal surgery and the formation of a stoma cause
significant trauma to the anterior abdominal wall musculature.
Association of Stoma Care Nurses UK (ASCN) national
guidelines (ASCN, 2016) recommend that patients engage
in appropriate abdominal and core muscle exercises after
surgery to rehabilitate the abdominal wall, potentially reducing
the risk of parastomal hernia and other postural complaints.
There is very little research in this area, however, the studies
that have been done (Thompson and Trainor, 2007; North,
2014) found that hernia incidence was reduced significantly
Responses 2449
40
37.26%
35
30
25
20
19.45%
18.83%
15
15.25%
10
9.19%
5
0
Much less A little less About A little more Much more
active active the same active active
Figure 1. Physical activity after surgery
S22
by an intervention that included doing abdominal exercises
in addition to wearing a support garment. Parastomal hernia
continues to be a concern for nurses, patients and surgeons. It
is generally considered that having weak abdominal muscles
increases the risk of developing a parastomal hernia, therefore,
strengthening the muscles with appropriate exercises would
appear to be a logical approach. An intervention of core
movements (to include the anterior abdominal wall, pelvic
floor and trunk muscles) and exercises has many other benefits
in addition to the potential reduction of parastomal hernia
risk, including addressing biomechanical and postural issues,
balance, coordination, ability to withstand intra-abdominal
pressure and general wellbeing and confidence.
Methodology
The survey was designed carefully to gather quality data,
using a mix of open and closed questions, 3- and 5-point
rating scales and avoiding the use of leading questions. The
survey was reviewed by an internal clinical affairs team and a
colorectal surgeon. A small pilot study was conducted using a
team of patient advocates and feedback was incorporated.The
project gained NHS Ethics Approval (Camden and Kings Cross
Committee) on 11 March 2016.
The title of the survey Living with a stoma, your
experience was intentionally non-leading.The words exercise
or physical activity were omitted to encourage a wider range
of respondents. The research uses self-report methodology,
which is well known for possible exaggeration, under/over-
reporting and bias. This was countered with careful question
design and a pilot study, but it should still be taken into account
as a limitation of the research.The authors personal experience
of stoma surgery has led to an interest in rehabilitation after
stoma surgery and a desire to support both patients and nurses
with information and education.
The survey was distributed online via Survey Monkey. It
was shared via a patient database (of 10000 patients) and on
social media through charitable associations and organisations.
Each question was optional, and questions could be skipped
if desired. The survey was kept open for a period of 3weeks.
A total of 2631people responded to the survey. The survey
data were analysed by SQN (www.synequanon.com ) using
a range of statistical tests including Chi-squared, Kruskal-
Wallis and Spearmans correlation. As with any self-report
methodology, the data have the usual limitations and potential
bias. The author also undertook a number of one-to-one
interviews with stoma patients and nurses to gather additional
qualitative data.
Results and discussion
Demographics
More women (54%) than men (46%) responded to the survey.
The biggest age group was 6069 year olds (30%) followed
2017 MA Healthcare Ltd
closely by 7079 year olds (29%). The main reason for stoma
surgery was ulcerative colitis (29%), followed by colorectal cancer
(23%) and Crohns disease (16.3%), with other conditions/
trauma making up the remainder.
A total of 46% of respondents had had their stoma for 10years
British Journal of Nursing, 2017 (Stoma Supplement), Vol 26, No 5
 RESEARCH

or more, followed by 16% each of those ranging from 1-3years
and 5-10years.
General physical activity
In response to the question Are you more or less active than
you were before your surgery? (Figure1), although 37% of
people reported being about the same, the main trend was
that people became less active after their stoma surgery with
19.5% saying they are much less active and a 18.8% saying
they are a little less active.
This is a significant finding but perhaps not that surprising.
When investigated further, responses pointed to having another
medical condition (39%), not having enough energy (17%) and
worries about the bag leaking or coming loose (19%). However,
qualitative data and comments in the survey strongly indicated
that people were scared of doing damage by exercising and
developing a hernia with many comments such as I refrain
from exercise in case I get a hernia.
Age groups
Looking at the different age groups in more detail, the general
trend was that younger patients typically reported being more
active than those in older groups. In particular 27.9% of 20
29year olds indicated they were much more active compared to
4.1% of those 7079 years old, which is perhaps to be expected.
And conversely, 8.8% of the 3039 year age group reported being
is important to acknowledge the long-term psychological
impact of a cancer diagnosis and how this may impact
self-confidence and the ability to be physically active. This
illustrates that people who have a stoma because of cancer
may need additional support, guidance and encouragement
from health professionals.
A total of 67.7% of respondents said they had not been
given information about physical activity at any stage of their
surgery or recovery, and a further 82.3% had not received
advice about core or abdominal exercises (Figure3), despite
ASCN (2016) guidelines recommending that patients receive
this information.
This is reflective of individual experiences, with comments
from patients such as:
I was never given advice about exercise.
Your survey made me realise how little advice
there is.
There is a need for much more support and
advice about exercise.
Patients with cancer (777) Patients with other conditions (1672)
45 41.7%

a little less active compared to 20% of the 6069 year old group. 40 37.26%

When investigated further, 41% of the older age group 35

(over 60s) reported having another medical condition (such 30
24.84% 25.35%
as arthritis) which was a barrier to them being active, compared 25
with 15% of the under 50s. 20 19.45% 18.83%
People who reported being more active said that this was 15.25%
15
owing to a significant improvement in their health (69%).
10 9.19%
Typically these were patients who had suffered with IBD for 6.31%
many years before surgery. 5
1.8%
However, when considering UK guidelines for physical 0
activity levels (150 minutes of moderate physical activity per Much less A little less About A little more Much more
week (DH, 2011), 69% of respondents were not active to the active active the same active active
recommended levels, with 18% saying that they did no physical
Figure 2. How active are you now compared to before your stoma surgery?
activity at all. It is important to note this is self-reported data,
liable to bias and exaggeration and the real figures for people Abdominal exercises Physical activity
who did no exercise are likely to be much higher.
90
When the data were separated to compare patients with 82.35%
80
cancer (colorectal, bladder or other) and other conditions, the 67.73%
level of reported physical activity dropped further (Figure2). 70
People who have their stoma owing to cancer reported 60
being significantly less active (24.8% said they were much less 50
active) than people with other conditions (IBD, diverticular 40
disease etc) (p value <0.001). 30
This is a significant finding and is in line with other research 20 18.99%
indicating that physical activity levels in cancer survivors drop 10.6% 13.27%
10 6.99%
significantly. One study estimated that 68% of people (46-
2017 MA Healthcare Ltd

0
64years old) and 86% of those aged over 65years living with
and beyond cancer do not meet recommended levels of physical Yes No Cant remember
activity in the UK (Campbell, 2016).
Side effects of cancer treatment, such as fatigue, are likely Figure 3. Were you given advice about physical activity or abdominal exercises by
to be a barrier to physical activity in the short term, but it a health professional?

British Journal of Nursing, 2017 (Stoma Supplement), Vol 26, No 5 S23

 2346 responses If no, why not?
to their patients. This shows a significant gap in patient care
Yes No
and SCNs need to be supported in how to provide safe and
Not appropriate 8.3% appropriate advice about abdominal exercise and long-term
physical activity in general.
Not well enough 19%
12.36% Parastomal hernia
Fear of hernia 8.94%
A total of 26% of patient respondents reported having a
Didnt have time 3.11% medically diagnosed parastomal hernia, with a further 11%
suspicious that they may have one but had not had it diagnosed.
Didnt know what 8.64% In total, 55% had no signs or symptoms of a hernia at all. The
to do
remaining (8%) was unsure.
Advised not to 5.1% Physical activity levels are significantly lower in those with
87.64%
a medically diagnosed hernia, with 32.9% reporting to be
Didnt realise it 69%
was important
much less active than they were before surgery, compared
to 19.45% without a hernia. One of the biggest risk factors
Figure 4. Did you do any abdominal exercises as part of your recovery? in developing a parastomal hernia is having a high body mass
index or being overweight (ACSN, 2016). Becoming more
overweight and deconditioned owing to inactivity is likely to
2472 responses
make the hernia even worse, so it is vital that patients with an
40 Yes, have done activity No activity 38%
existing parastomal hernia are given advice about weight loss
35 and the role of appropriate physical activity.
30
25 22% 22% 22% Quality of life
21% 20%
20 18% The survey also asked a range of questions about how people
16% 15% felt about living with a stoma and their general quality of life.
15
10
In response to the questions how do you feel about living with
6% a stoma?, 38% of patients said they get on with life with 36%
5
saying their stoma bothered them from time to time. Only
0
17.7% reported being better than before.
Much worse A little worse The same A little better Much better Cardiac rehabilitation programmes have successfully
demonstrated an improvement in perceived quality of life
Figure 5. Reported quality of life. People who did some physical activity compared
to those who didnt with reductions in anxiety and depression in participants
(Anderson et al, 2014). It is highly likely that an intervention
involving physical activity for the stoma patient could have
There were similar findings from a large population study in similar outcomes.This was shown by a small pilot study (CRIB
2015 that found only 31% of colorectal cancer patients recalled Cardiac Rehab In Bowel cancer study) at the University of
being given advice about physical activity (Fisher et al, 2015). Stirling in 2015, which referred colorectal cancer survivors
Also similar to this study, patients, who could recall being given (not all of whom had stomas) to existing cardiac rehabilitation
advice, were significantly more physically active, indicating that programmes.The conclusion was that it was feasible to include
advice (no matter how brief) from a health professional has a cancer patients in a cardiac rehabilitation programme and those
direct impact on patient activity levels. patients obtained similar benefits, in particular the confidence
In addition to patients not being given advice, it appears they to be physically active again (Hubbard et al, 2016).
do not independently seek it.When asked if they had requested The findings of the research presented in this article show a
or researched information, 71% of people said no, yet when strong correlation between people who reported having done
asked if they would like to be given information about physical some physical activity since their surgery and a higher perceived
activity by a health professional, 94% replied as yes or maybe. quality of life (p<0.05). A total of 38% of people who said that
ASCN clinical guidelines (2016) state that patients should they had done some activity also said their quality of life was
be provided with relevant advice about core/abdominal much better than it was before surgery, compared to 20% who
exercises after surgery to reduce the risk of parastomal hernia. did no exercise (Figure5). This could indicate a link between
However, the findings of this survey found that 87.6% of engaging in physical activity and feeling generally more positive
patients did not engage in any abdominal or core exercises at about living with a stoma.
all. When investigated further, 69% of patients reported that
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they didnt realise they were important (Figure4).This shows a Limitations

significant area of concern around misunderstanding and lack of The research uses self-report methodology which is well known
knowledge/education. Stoma care nurses (SCNs) interviewed for possible exaggeration, under/over-reporting and bias . This
as part of this research said they felt unsure about what to was countered with careful question design and a pilot study, but
suggest and did not feel confident in recommending exercises it should still be taken into account as a limitation of the research.

S24 British Journal of Nursing, 2017 (Stoma Supplement), Vol 26, No 5

 RESEARCH

Conclusion
Physical activity levels drop significantly after stoma surgery,
and the vast majority of people living with a stoma do not
meet UK guidelines for physical activity. Those with a cancer
diagnosis or a parastomal hernia are even less active.
Patients report being fearful of exercise, physical activity and
of developing a parastomal hernia.The majority of stoma patients
are not given advice about the benefits of physical activity or
appropriate exercises for abdominal wall rehabilitation. They
are not being given guidelines/encouragement about how to
engage in general physical activity, despite guidelines to the
contrary from ASCN, ACSM and Macmillan.
All health professionals, including SCNs and surgeons, need to
become more familiar with UK guidelines for physical activity,
and Macmillan and ACSM guidelines about physical activity for
cancer patients, and then advise and support patients appropriately.
Patients should be advised to return to normal activities as
soon as they feel able (if appropriate) after surgery/treatment
and to engage in appropriate abdominal and core exercises
to rehabilitate the abdominal wall as stated in ASCN (2016)
guidelines. If they are not sure how to advise, SCNs should
refer to a physiotherapist, experienced exercise professional
or qualified Pilates instructor with knowledge of post-natal
rehabilitation for advice. Stoma patients should be advised to
avoid inactivity and sedentary behaviours and encouraged to
lead an active lifestyle during the recovery period and beyond.
Patients should be supported to overcome any barriers to
physical activity; and given advice about leakage management
with an alternative pouch/appliance and advice on hydration
and nutrition to support a more active lifestyle.
Much more emphasis needs to be given to the importance
of physical activity and an appropriate movement/rehabilitation
intervention for stoma patients, sign-posting to appropriate
cancer rehabilitation services or GP exercise referral schemes
where available. Further research is needed to provide evidence
on the effect of physical exercise on parastomal hernia. BJN
Declaration of interest: this article has been supported by ConvaTec
Acknowledgements: the author would like to thank The Ileostomy
Association, Stomawise, Crohns and Colitis UK, Colostomy
Association, Urostomy Association, Beating Bowel Cancer, Bowel and
Cancer Research and Professor Sina Dorudi, Consultant Colorectal
Surgeon,The Princess Grace Hospital, London.
Anderson L, Taylor RS (2014) Cardiac rehabilitation for people with heart
disease: an overview of Cochrane systematic reviews. Cochrane Database
Syst Rev (12): CD011273. https://dx.doi.org/10.1002/14651858.
CD011273.pub2
Arem H, Pfeiffer RM, Engels EA et al (2015) Pre- and postdiagnosis physical
activity, television viewing, and mortality among patients with colorectal
cancer in the National Institutes of Health-AARP Diet and Health Study.

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British Journal of Nursing, 2017 (Stoma Supplement), Vol 26, No 5 S25


KEY POINTS
From the results of this survey, physical activity levels drop significantly
after stoma surgery, and the vast majority of people living with a stoma do
not meet UK guidelines for physical activity
From the results of this survey, patients are not being given advice about
the importance and benefits of physical activity after surgery by any health
professional
Despite Association of Stoma Care Nurses guidelines,according to this
research, 83% of stoma patients are not advised about appropriate core/
abdominal exercises after stoma surgery
Many patients report being fearful of physical activity and of developing a
parastomal hernia, and therefore often refrain from exercise
People with stomas should be encouraged to be physically active, in line
with UK recommendations, and to return to any sport or activity they wish
J Clin Oncol 33(2): 1808. https://dx.doi.org/10.1200/JCO.2014.58.1355
Association of Stoma Care Nurses (2016) ASCN Stoma Care National Clinical
Guidelines. https://tinyurl.com/jgxo6h9 (accessed20 February 2017)
Berkemeyer K, Wijndaele K, White T et al (2016) The descriptive
epidemiology of accelerometer-measured physical activity in older adults.
Int J Behav Nutr Phys Act 13: 2. https://dx.doi.org/10.1186/s12966-015-
0316-z
Bull F, Biddle S, Buchner D et al (2010) Physical Activity Guidelines in the U.K.:
Review and Recommendations. School of Sport, Exercise and Health Sciences,
Loughborough University. https://tinyurl.com/otqdlmt (accessed 20
February 2017)
Campbell A (2016) CanRehab Level 4 Qualification Cancer & Exercise
Rehabilitation Instructor Training Handbook. CanRehab, Perth
Department of Health (2011) Start Active, Stay Active. A Report on Physical
Activity for Health from the Four Home Countries Chief Medical Officers.
https://tinyurl.com/p78j7zg (accessed 20 February 2017)
Fisher A, Williams K, Beeken R, Wardle J (2015) Recall of physical activity
advice was associated with higher levels of physical activity in colorectal
cancer patients. BMJ Open5:e006853. https://dx.doi.org/10.1136/
bmjopen-2014-006853
Hubbard G, Adams R, Campbell A et al (2016) Is referral of postsurgical
colorectal cancer survivors to cardiac rehabilitation feasible and
acceptable? A pragmatic pilot randomised controlled trial with embedded
qualitative study. BMJ Open 6(1): e009284. https://dx.doi.org/10.1136/
bmjopen-2015-009284
Meyerhardt JA, Heseltine D, Niedzwiecki D et al (2006) Impact of physical
activity on cancer recurrence and survival in patients with stage III colon
cancer: findings from CALGB 89803. J Clin Oncol 24(22): 353541.
https://dx.doi.org/10.1200/JCO.2006.06.0863
Macmillan (2016) Move More.Your Guide to Becoming More Active. https://
tinyurl.com/h5r57wq (accessed 24 February 2017)
North J (2014) Early intervention, parastomal hernia and quality of life: a
research study. Br J Nurs 23(5): S14-18. https://dx.doi.org/10.12968/
bjon.2014.23.Sup5.S14
Schmitz KH, Courneya KS, Matthews C et al (2010) American College of
Sports Medicine roundtable on exercise guidelines for cancer survivors.
Med Sci Sports Exerc 42(7): 140926. https://dx.doi.org/10.1249/
MSS.0b013e3181e0c112
Thompson MJ, Trainor B (2007) Prevention of parastomal hernia: a
comparison of results 3 years on. Gastrointestinal Nursing 5(3): 228.
https://dx.doi.org/10.12968/gasn.2007.5.3.23472
White S for Macmillan (2012) Developing a rehabilitation programme for
people with cancer. https://tinyurl.com/hb8fcow (accessed 20 February
2017)
Wolin KY,Yan Y, Colditz GA, Lee I-M (2009) Physical activity and colon
cancer prevention: a meta-analysis. Br J Cancer 100(4): 6116. https://
dx.doi.org/10.1038/sj.bjc.6604917
World Health Organization (2014) Global Status Report on Non-communicable
Diseases. https://tinyurl.com/pgwxcpo (accessed 24 February 2017)

CPD reflective questions

Think about the support a patient with a stoma might need when beginning to exercise after surgery. How can you improve the patient
experience?
Think about how you might develop skills and knowledge to advise patients appropriately about physical activity and core/abdominal
exercises after stoma surgery
Think about some research that you could undertake that could improve the patient experience and support you in practice

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