Received: 31 October 2022 | Accepted: 7 March 2023

DOI: 10.1111/jhn.13168

PRINCIPLES OF NUTRITION AND DIETETICS

Diet After Ileostomy Study: an observational study describing

dietary intake and stoma‐related symptoms in people with an
ileostomy

Clare England | Alexandra Mitchell | Charlotte Atkinson

National Institute for Health Research Bristol

Biomedical Research Centre, University Abstract
Hospitals Bristol and Weston NHS Foundation Background: People with ileostomy are frequently advised to avoid specific
Trust, University of Bristol, Bristol, UK
foods and food groups, making it plausible that they are at risk of a range of
nutrition‐related adverse health consequences. Despite this there has been no
Correspondence
Clare England, Diet and Physical Activity
recent study in the United Kingdom describing dietary intake, symptoms and
Theme, NIHR Biomedical Research Centre food avoidance in people with ileostomy or post‐reversal.
Bristol, University Hospitals Bristol and Methods: A cross‐sectional study was conducted at different time points in
Weston NHS Foundation Trust, University of
Bristol, Oakfield House, Oakfield Grove,
people with ileostomy and reversal. Participants were recruited at 6–10 weeks
Bristol BS8 2BN, UK. post‐formation (n = 17) and ≥12 months with established ileostomy (n = 16)
Email: [email protected] and with reversal (n = 20). In all participants, ileostomy/bowel‐related
Funding information
symptoms in the previous week were assessed using a study‐specific
National Institute for Health Research questionnaire. Dietary intake was assessed using three online diet recalls or
3‐day dietary records. Food avoidance and reasons for food avoidance were
assessed. Data were summarised using descriptive statistics.
Results: Participants reported a few ileostomy/bowel‐related symptoms in the
previous week. However, over 85% of participants reported avoiding foods,
particularly fruits and vegetables. At 6–10 weeks the most common reason was
being advised to do so (71%), although 53% avoided foods due to gas. At ≥12
months the most common reasons were foods visible in the bag (60%) or
advised to do so (60%). Reported intakes of most nutrients were comparable to
population medians, apart from lower fibre in people with ileostomy. Intakes of
free sugars and saturated fats were above recommended levels in all groups, due
to high consumption of cakes and biscuits and sugar‐sweetened drinks.
Conclusion: After the initial healing period, foods should not be automatically
excluded unless found to be problematic after reintroduction. There may be a
need for healthy eating advice for people with established ileostomies and
post‐reversal, targeting discretionary high‐fat, high‐sugar foods.

KEYWORDS
dietary intake, food avoidance, ileostomy, nutrients, symptom control

Key points
• People with ileostomy reported a few symptoms, but food avoidance was
common, particularly of fruits and vegetables. The most common reason for
avoiding a food was being advised to do so.

This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided
the original work is properly cited.
© 2023 The Authors. Journal of Human Nutrition and Dietetics published by John Wiley & Sons Ltd on behalf of British Dietetic Association.

1600 | wileyonlinelibrary.com/journal/jhn J Hum Nutr Diet. 2023;36:1600–1612.

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ENGLAND ET AL.
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• Reported intakes of most nutrients were comparable to population

medians, apart from fibre in people with ileostomy, mainly due to the low
consumption of fruits and vegetables.
• People with ileostomy and ileostomy reversal reported high intakes of cakes,
biscuits and sugar‐sweetened drinks, which resulted in diets high in
saturated fat and free sugars. There may be an unmet need for dietary
advice targeting high‐fat, high‐sugar discretionary foods in this population.

INTRODUCTION ME THO DS
In England alone, over 7000 new temporary or perma- Study design
nent ileostomies are created annually,1 with an estimated
6%–32% of temporary ileostomies never reversed.2 The DAIL was an observational study describing dietary
most common indications of ileostomy formation are habits in people with newly formed ileostomies (6–10
Crohn's disease, ulcerative colitis and colorectal cancer. weeks after formation) and/or ‘established’ ileostomies
Formation of an ileostomy radically alters gut function (at least 12 months after formation) or after reversal. The
and may affect the absorption of certain nutrients, in study was conceived as a longitudinal study, aiming to
particular, sodium and vitamin B12, and can cause bile recruit participants 6–10 weeks after ileostomy forma-
acid malabsorption.3 There is limited research and a tion, with follow‐up 12 months post‐operatively. How-
great deal of uncertainty on what constitutes a healthy ever, recruitment occurred from September 2020 to
diet for people with ileostomy, but people are frequently December 2021 and was adversely affected by the
advised to make dietary changes to manage their COVID‐19 pandemic of 2020–2021. Therefore, a prag-
ileostomy and are warned against consumption of matic decision was taken to allow the recruitment of
specific foods.4 There is evidence that people do alter participants whose ileostomies were formed ≥12 months
their diet to control output5 and to avoid blockage and previously; for these individuals, data for the early time
gas.6 Dietary restriction, combined with malabsorption point (6–10 weeks after stoma formation) were not
of nutrients, makes it plausible that people with available. Data are reported cross‐sectionally at each
ileostomy are at risk of a range of adverse health time point.
consequences, such as pernicious anaemia, increased
fracture risk or the metabolic syndrome.
Despite this situation, little research has been Setting and study population
conducted examining diet and dietary habits in people
with ileostomy. A dietary intake study of 40 participants Participants were identified from the UK ‘Cohort study
in Brazil, conducted during 2014–2015, found that they to Investigate the Prevention of parastomal Hernia’
followed a nutritionally adequate, low‐fat (24% energy), (CIPHER) study,9 a cohort study of people with newly
high‐carbohydrate (58% energy) diet containing 27 g of formed stomas recruited from approximately 50 NHS
fibre per day.7 In comparison, a UK‐based study with 79 acute trusts across the United Kingdom. Participants
participants (37 who completed food diaries), published were recruited to the CIPHER study by a stoma care
in 1982, found participants followed a high‐fat (40% nurse or surgeon. As part of the CIPHER consent
energy), moderate‐carbohydrate (46% energy) diet con- process, people were asked if they consented to being
taining 18 g of fibre per day.8 Both studies concluded that contacted about other research studies. Eligible partici-
participants did not generally have nutritional deficien- pants were sent information on DAIL and invited to
cies, despite avoidance of specific fruits and vegetables contact the DAIL study team if interested in
being common. participating.
There has been no recent study in the United Participants were eligible for DAIL if they were aged
Kingdom describing dietary habits and food avoidance 18 years or above, were able to provide written informed
in people with ileostomy, and there are none that consent and had surgery, including formation of either a
have considered diet after reversal. Therefore, the aim loop or end ileostomy <10 weeks or ≥12 months prior to
of the Diet After Ileostomy Study (DAIL) was to recruitment. Patients were excluded if they lacked
describe dietary intake and habits, stoma‐related symp- capacity to consent, had a life expectancy <12 months
toms and receipt of dietary advice in people 6–10 weeks (assessed by CIPHER) or had surgery with the intention
after ileostomy formation and in people with established of forming a stoma other than a loop or end ileostomy.
ileostomies, or reversals, at least 12 months after initial Written consent was obtained from all participants,
formation. either through a secure online form or by post.
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1602 | THE DIET AFTER ILEOSTOMY STUDY

Data collection In addition, participants completed the 20‐item

Stoma‐Related Quality‐of‐Life questionnaire15 at 6–10
Participants were asked to complete a brief demographic weeks and ≥12 months for participants who still had an
questionnaire, which included reasons for stoma forma- ileostomy. Due to the small sample size, quality‐of‐life
tion. A study‐specific food habits and symptoms data are presented in Supporting Information.
questionnaire (Supporting Information) was developed
to assess food habits, appetite, food enjoyment, food
avoidance and tolerance and the provision and sources of Statistical analysis
dietary advice. Participants were also asked to provide an
estimate of how often they had experienced certain At both time points (6–10 weeks and ≥12 months after
symptoms during the previous week (pain, odour, stoma formation) diet and food habit data, food
flatulence, higher output than normal, leakage and foods restriction, symptoms, provision of dietary advice and
visible in output), scoring as follows: not at all = 0, a nutritional and food group intake were summarised
little = 1, quite a bit = 2 and a lot = 3. A symptom score using descriptive statistics. Data were non‐normal and
from 0 to 18 was derived by summing scores across all described using median and interquartile range (IQR),
symptoms for each participant. A free text box was except for BMI (mean and standard deviation). Cross‐
available to provide details of other symptoms where sectional comparisons at ≥12 months were made between
applicable. Participants who had their stoma reversed at participants with established ileostomies and those who
≥12 months completed a shorter food habits question- had had their ileostomy reversed using Fischer's exact
naire and a symptoms questionnaire with eight items test for categorical variables and Mann–Whitney U‐test
(assessing pain, odour, flatulence, constipation, bowel for continuous variables. Due to the small sample size,
urgency, diarrhoea, faecal incontinence and undigested comparisons were not made between data collected at
foods in stools in the previous week). The questionnaire 6–10 weeks and those at 12 months from the same
was developed by the study team and piloted and participants or between men and women at any time, and
checked for face validity by three patient representatives. associations between variables were not examined. Data
Questionnaires could be completed online or by post. analyses were performed using Stata 17 (Stata-
Dietary intake was assessed by asking participants to Corp LLC).
complete either three online 24‐h dietary recalls using the
validated online diet recall programme, Intake24,10 or a
paper‐based 3‐day food diary. No specific days (weekend or RESULTS
weekdays) were requested. Paper‐based food diaries were
entered into Intake24 by an experienced dietary coder using A total of 41 participants were recruited. Figure 1 shows
standardised methods.11 Mean daily consumption for recruitment and data collected at each time point.
energy, macronutrients, fibre, alcohol and key micronutri- Table 1 presents the characteristics of all participants at
ents (except for sodium, because diet recalls are inaccurate
for salt intake) was estimated for each participant. Foods
were classified into 28 broad food groups, by aggregating
Intake2410 food groupings. The number of people who
consumed each food group at least once and the mean daily
contribution of each food group to selected macronutrient
intakes (energy, saturated fat, free sugars and fibre) per
participant were calculated. Daily portions of fruits and
vegetables were estimated using the non‐disaggregated
method described in the 2002 National Diet and Nutrition
Survey (NDNS), excluding fruit juice and including pulses.12
A portion of fruits or vegetables is 80 g; fruit pies are
estimated to contain 40% fruits; and vegetable dishes such as
vegetable stew are estimated to contain 40% vegetables.
Starchy vegetables such as potatoes, yams and taro are not
included as vegetables. The number of participants meeting
UK government dietary recommendations13 for key macro-
nutrients and micronutrients was calculated.
Aggregated data for all DAIL participants were
provided by CIPHER for body mass index (BMI),
Canadian Study of Health and Ageing Frailty Score
(Rockwood Score),14 a diagnosis of diabetes and
presence of chronic kidney disease. FIGURE 1 Recruitment and data collection.
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ENGLAND ET AL.
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TABLE 1 Characteristics for during ileostomy formation. most avoided were vegetables and fruits, with 14 partici-
Overall n = 41
pants (82%) avoiding at least one specific vegetable or fruit
and 7 participants (41%) avoiding or limiting most
Age (years), median (IQR) 62 (55, 70)
vegetables or most fruits because they had been advised
Sex, n (%) a
to do so. Nuts were avoided by six (35%), fish by five (29%)
Male 28 (68)
and mushrooms by four (24%) participants; other specific
foods were avoided by only one or two people.
Female 13 (32) Ten participants reported foods that helped with
Ethnicity, n (%) symptoms, particularly to reduce or thicken output. The
most common foods reported to help were starchy foods
White 35 (85)
and marshmallows/jelly babies.
Prefer not to say 6 (15) Twelve (71%) participants reported restricting more
Reason for ileostomy, n (%) foods 6–10 weeks after ileostomy formation than they
had before their surgery, although most (88%) indicated
Cancer 30 (73)
that bowel‐related symptoms were the same or had
Inflammatory bowel disease 8 (20) improved since formation. Table 3 presents the symp-
Bowel obstruction 1 (2)
toms experienced. The median (IQR) symptom score was
4,3,6 indicating that most participants had experienced
Unspecified 2 (5) only a few or mild symptoms in the previous week. The
BMI, mean (SD)b 27.2 (3.8) most common symptoms were foods visible in the output
and gas/flatulence, although 12 participants (65%)
Frailty, n (%)b
reported an output that was at least a little higher than
1 (very fit) 15 (37) normal, 7 (41%) experienced a little leakage and 6 (35%)
2 (fit) 17 (42) experienced a little pain.
3 (managing well) 4 (10)

4 (living with very mild frailty) 4 (10) Food restriction with established ileostomy
6 (living with moderate frailty) 1 (2)
Thirteen participants with an established ileostomy
b
Type 2 diabetes, n (%) 2 (5) (87%) reported avoiding foods or drinks to control
Chronic kidney disease, n (%)b 0 (0) symptoms (Table 2). The most common reason for
avoiding foods was that they were visible in the bag
Abbreviations: BMI, body mass index; IQR, interquartile range; SD, standard
deviation. (60%) or the participant had been advised to avoid them
a
Number of females at 6–10 weeks = 4 (22%), at ≥12 months with ileostomy = 7 (60%), although four (27%) participants avoided foods
(35%) and at ≥12 months with reversal = 5 (33%). and drinks due to pain. Again, the most common foods
b
Aggregated data from CIPHER (Cohort study to Investigate the Prevention of avoided were vegetables and fruits (by 11 participants
parastomal Hernia).
[73%]), although most people were avoiding specific
items rather than the whole food group. Sweetcorn and
ileostomy formation. Mean age was 62 (range: 24–79) mushrooms were avoided by six (40%) and peas by five
years, and 13 (32%) were women. Most (73%) partici- (33%) participants. Three participants (20%) reported
pants required an ileostomy due to cancer. avoiding all fruit or vegetable skins. Only two (13%) were
At ≥12 months, 20 (56%) participants had had their avoiding other high‐fibre foods, although nuts were
ileostomy reversed. For these participants, median time avoided by five (33%) participants.
with an ileostomy was 283 (IQR: 211, 403) days, and Six participants (40%) reported foods that helped,
time since reversal was 196 (IQR: 83, 352) days. For the most commonly starchy foods or jelly babies to reduce or
16 participants with an established ileostomy, median thicken output.
time since formation was 369 (IQR: 366, 457) days.

Symptoms with established ileostomy or after

Food restriction and nutritional analysis ileostomy reversal
Food restriction at 6–10 weeks The median symptom score for those with established
ileostomy was 4,3,9 with the most common symptoms
Fifteen participants (88%) reported avoiding foods and being foods visible in the output and gas/flatulence
drinks. The most common reason for avoiding foods was (Table 3). However, 10 participants (60%) experienced at
being advised to do so (71%) and increased gas (53%). least a little pain and 8 (53%) at least a little leakage. In
Table 2 presents the foods avoided and the reasons. Foods participants whose ileostomy had been reversed, the
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1604 | THE DIET AFTER ILEOSTOMY STUDY

TABLE 2 Foods and drinks avoided and helpful foods and drinks 6–10 weeks and ≥12 months post ileostomy formation.

6–10 ≥12
weeks months
(n = 17) (n = 15)
Items avoided due to ileostomy‐related symptoms, n (%) 15 (88) 13 (87)

Increases output, n (%) 6 (35) 7 (47)

a b a a,b a a b b
Vegetables and fruit (cauliflower cheese, onions, salad, mushrooms, beans, pulses, peas, sweetcorn, 5 (29) 3 (20)
potato skinb and melona)

Dairy (cream/cheesea) 1 (6) 0 (0)

a b
Spicy food/spices (chicken curry/chili and unspecified ) 1 (6) 2 (13)
a a,b a b b
Starchy food (potatoes, pasta, porridge, wholemeal bread and high‐fibre cereal ) 1 (6) 3 (20)

Drinks (hot chocolate, lemonade, sugar‐free fizzy drinks, beer, wine, prosecco and alcohol )
a b b a a b b
3 (18) 5 (33)

Causes pain, n (%) 1 (6) 4 (27)

Vegetables and fruit (onionsb and baked beansa) 1 (6) 1 (7)

Starchy food (bread crustsb) 0 (0) 1 (7)

b
Spicy food (unspecified ) 0 (0) 2 (13)
b b
Drinks (fizzy drinks and prosecco ) 0 (0) 2 (13)

Has caused blockage, n (%) 1 (6) 3 (20)

a b b
Vegetables and fruit (unspecified fresh fruit, potato skin and banana ) 1 (6) 2 (13)
b
Starchy food (bread ) 0 (0) 1 (7)

Increases odour, n (%) 7 (41) 5 (33)

Vegetables (broccoli,a cauliflower cheesea and onionsb) 2 (12) 1 (7)

Eggs 2 (12) 0 (0)

a b
Dairy (cream/cheese and unspecified ) 1 (6) 1 (7)
a b
Spicy food (chicken curry and unspecified ) 1 (6) 2 (13)

Fish 5 (29) 3 (20)

Increases gas, n (%) 9 (53) 6 (40)

a a a a a,b a a
Vegetables and fruit (broccoli, cauliflower, cauliflower cheese, spinach, onions, baked beans, beans, 5 (29) 3 (20)
pulses,a peas,b sweetcorn,b mushrooms,b fruit and vegetable skinsb and dried fruita)

High‐fibre starchy food (high‐fibre cereal/breadb) 0 (0) 1 (7)

Eggs 1 (6) 0 (0)

Excess fried foods (also felt sick) 1 (6) 0 (0)

Fish 1 (6) 0 (0)

a,b a,b a,b
Drinks (fizzy drinks, beer and wine ) 3 (18) 5 (33)

Visible in the bag, n (%) 6 (35) 9 (60)

Vegetables and fruit (broccoli,a spinach,a onions,a,b mushrooms,a,b mashed roots,a beans,a,b peas,a,b 6 (35) 8 (53)
pulses,a,b sweetcorn,b potato skin,b unspecified fresh fruit,a orange,b fruit and vegetable skins,b dried
fruita and appleb)

Nuts 0 (0) 1 (7)

Bread crusts 1 (6) 0 (0)

Red meat 0 (0) 1 (7)

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TABLE 2 (Continued)

6–10 ≥12
weeks months
(n = 17) (n = 15)
Advised to avoid, n (%) 12 (71) 9 (60)
a a a a a,b a,b
Vegetables and fruit (Brussels sprouts, green vegetables, broccoli, cabbage, mushrooms, sweetcorn, 12 (71) 5 (33)
bean sprouts,a lettuce,a onions,a undercooked vegetables,a salad,a potato skin,a,b tomato skin,a,b ‘limit’
unspecified vegetables,a legumes,a peas,a,b hard fruits,a ‘limit’ fruit,a raw/fresh fruit except bananas,a fruit
and vegetable skins,a,b fruit cakea and mueslia)

Nuts (avoid/limit) 6 (35) 4 (27)

a,b a a b
High‐fibre starchy foods (wholemeal bread, wholemeal pasta, brown rice, high‐fibre cereal and 3 (18) 1 (7)
unspecifieda)

Spicy food (unspecifieda,b) 1 (6) 1 (7)

Drinks (excess amounts of just water, hot chocolate, fizzy drinks and beer )
a a b b
2 (12) 2 (13)

No longer fancy n (%) 2 (12) 0 (0)

a a a
Alcoholic drinks (unspecified, beer and wine ) 2 (12) 0 (0)
a
Dairy (cheese/cream ) 1 (6) 0 (0)

Intolerance (newly reported) 0 (0) 1 (7)

Pork and pork gelatin 0 (0) 1 (7)

Items helping ileostomy‐related symptoms 10 (59) 6 (50)

Reduces or thickens output n (%) 9 (53) 5 (33)

a,b b
Fruit (banana and apples ) 3 (18) 1 (7)
a a,b a,b a,b a a,b
Starchy food (porridge, cereal, toast, white bread, rice, jacket/boiled/mashed potatoes, salted 5 (29) 4 (27)
crispsa,b,c and biscuitsb)

Non‐alcoholic drinks (squash/cordial with sugar,a,b strong squasha and peppermint teaa) 2 (12) 0 (0)
a a,b
Marshmallow and jelly babies/cubes 3 (18) 2 (13)
b
Anything with gelatine in it 0 (0) 1 (7)
a a a,b
Other (ginger, peppermint oil and peanut butter ) 2 (12) 1 (7)

Salt replacement/electrolyte balance n (%) 1 (6) 0 (0)

a
Salted crisps 1 (6) 0 (0)
a
Isotonic drinks 1 (6) 0 (0)

Keeps output fluid/moving, n (%) 1 (6) 0 (0)

Watera 1 (6) 0 (0)

To avoid blockage/food visible in output, n (%) 2 (12) 0 (0)

a
Chewing food well 1 (6) 0 (0)
a
Fizzy drinks 1 (6) 0 (0)

Reduces gas, n (%) 1 (6) 2 (13)

b a b b b
Starchy food (Rice Krispies, white bread, boiled potatoes, crisps and biscuits ) 1 (6) 2 (13)
b
Anything with gelatine in it 0 (0) 1 (7)

Reduces odour, n (%) 1 (6) 0 (0)

Put extra strong mints in the baga 1 (6) 0 (0)

a
Items reported at 6–10 weeks.
b
Items reported at ≥12 months.
c
One participant also reported that the salted crisps and cordial with sugar were ‘invaluable in controlling nausea in the first 2 weeks’; squash was drunk for ‘hydration’
and milk due to ‘craving’.
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1606 | THE DIET AFTER ILEOSTOMY STUDY

T A B L E 3 Symptoms 6–10 weeks post ileostomy formation and at TABLE 3 (Continued)

≥12 months, with or without reversal.
≥12 months (n, %)
≥12 months (n, %) 6–10 weeks Established
6–10 weeks Established (n, %) ileostomy Reversed
(n, %) ileostomy Reversed (N = 17) (N = 15) (N = 20)
(N = 17) (N = 15) (N = 20)
Faecal incontinence n/a n/a
Symptom scores
Not at all 13 (65)
Pain
A little 7 (35)
Not at all 11 (65) 6 (40) 14 (70)
Quite a bit/a lot 0
A little 6 (35) 7 (47) 5 (25)
a a
Symptom score 4 (3, 6) 4 (3, 9) 5 (2, 8)b
Quite a bit/a lot 0 2 (13) 1 (5) (median, IQR)
Smell/odour Changes in p = 0.066c
symptoms since
Not at all 6 (35) 12 (80) 9 (45)
ileostomy
A little 9 (53) 2 (13) 6 (30) formation

Quite a bit/a lot 2 (12) 1 (7) 5 (25) Much worse now 0 1 (7) 1 (5)

Gas/flatulence/noise Slightly worse 2 (12) 1 (7) 8 (40)

Not at all 3 (18) 1 (7) 1 (5) About the same 9 (53) 5 (33) 5 (25)

A little 10 (59) 11 (73) 12 (60) Slightly 1 (6) 3 (20) 0

improved
Quite a bit/a lot 4 (24) 3 (20) 7 (35)
Much improved 5 (29) 5 (33) 6 (30)
Higher output than normal
Food restriction p = 0.063c
Not at all 6 (35) 10 (67) n/a since ileostomy
formation
A little 7 (41) 2 (13)
Fewer foods 3 (18) 0 2 (10)
Quite a bit/a lot 4 (24) 3 (20)
restricted
Leakage
No change in 1 (6) 1 (7) 4 (20)
Not at all 10 (59) 7 (47) n/a number

A little 7 (41) 6 (40) More foods 12 (71) 12 (80) 7 (35)

Quite a bit/a lot 0 2 (13) No food 1 (6) 2 (13) 7 (35)

restriction
Foods visible in output/in stools
Estimated bowel movements
Not at all 2 (12) 1 (7) 14 (70)
Day n/a n/a 4 (2, 7)
A little 12 (71) 7 (47) 5 (25)
Night 0 (0, 1)
Quite a bit/a lot 3 (18) 7 (47) 1 (5)
Abbreviation: IQR, interquartile range (25th, 75th quartile).
Constipation n/a n/a a
Score: 0–18.
b
Not at all 13 (65) Score: 0–24.
c
Comparison between established ileostomy and reversal at ≥12 months using
A little 4 (20) Fischer's exact test.

Quite a bit/a lot 3 (15)

Bowel urgency n/a n/a mean symptom score was 5,2,8 with gas/flatulence and
Not at all 7 (35) bowel urgency being the most common symptoms. Seven
(35%) reported experiencing a little faecal incontinence in
A little 3 (15)
the previous week.
Quite a bit/a lot 10 (50)

Diarrhoea n/a n/a

Nutritional analysis at 6–10 weeks
Not at all 14 (70)

A little 6 (30) Table 4 presents the nutritional analysis and adherence

to guidelines. Food group data are available in Support-
Quite a bit/a lot 0
ing Information, Tables S1 and S2.
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ENGLAND ET AL.
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TABLE 4 Nutritional analysis 6–10 weeks post ileostomy formation and at ≥12 months, with or without reversal.

6–10 weeks (median, Twelve months or more (median, IQR)

IQR) (N = 16)
Established ileostomy (N = 12) Reversed (N = 18)
Meets RNI Meets RNI Meets RNI
Daily reported intake (n, %) (n, %) (n, %) p‐Valuea
Energy (kcal) 2217 (1565, 2626) – 1662 (1385, 1978) – 2022 (1710, 2632) – 0.028

Protein (g) 78 (58, 89) 15 (94) 60 (50, 87) 7 (58) 76 (66, 91) 17 (94) 0.117

%E protein 14 (7, 13) – 15 (13, 17) – 16 (13, 17) – 0.703

Total fat (g) 65 (54, 101) – 73 (42, 84) – 79 (58, 95) – 0.220

%E total fat 30 (25, 34) 10 (63) 37 (33, 39) 3 (25) 33 (30, 38) 9 (50) 0.176

Saturated fat (g) 27 (21, 41) – 30 (19, 36) – 28 (20, 37) – 0.611

%E saturated fat 13 (11, 14) 3 (19) 16 (13, 17) 1 (8) 12 (11. 14) 2 (11) 0.031

Monounsaturated fat (g) 22 (15, 36) – 23 (15, 27) – 24 (22, 32) – 0.374

Polyunsaturated fat (g) 9 (7, 13) – 9 (5, 11) – 10 (6, 14) – 0.176

Total carbohydrate (g) 306 (241, 365) – 199 (161, 211) – 261 (202, 307) – 0.025

%E carbohydrate 52 (47, 55) – 45 (40, 49) – 47 (41, 52) – 0.556

Total free sugar (g) 83 (63, 129) – 43 (27, 67) – 67 (52, 86) – 0.038

%E free sugars 18 (12, 22) 0 (0) 11 (7, 14) 1 (8) 12 (10, 15) 1 (6) 0.397

Fibre (g) 12 (9, 18) 0 (0) 11 (7. 15) 0 (0) 18 (14, 21) 0 (0) 0.057

Alcoholb 13 (5, 23)c – 16 (5, 26)d – 25 (11, 29)e – –

Fruit and vegetable portionsf 2.7 (1.1, 3.9) 0 (0) 1.3 (0, 2.1) 0 (0) 3.2 (2.1, 5.3) 5 (28) 0.002

Total fluid (g) g

2347 (1592, 2854) – 1547 (1197, 2662) – 1744 (1404, 2179) – 0.767

Vitamin A (μg) 772 (421, 1035) 11 (73) 750 (405, 1010) 7 (58) 953 (640, 1407) 12 (67) –

Thiamine (mg) 1.4 (1.1, 1.7) 14 (88) 1.1 (0.9, 1.5) 9 (75) 1.5 (1.2, 1.8) 17 (94) –

Folate (mg) 303 (211, 331) 13 (81) 279 (178, 329) 9 (75) 272 (216, 315) 16 (89) –

Riboflavin (mg) 1.8 (1.2, 2.1) 12 (75) 1.6 (1.2, 1.9) 8 (67) 1.7 (1.0, 2.1) 11 (61) –

Niacin (mg) 20.0 (16.2, 23.0) 13 (81) 18.0 (15.3, 22.3) 9 (75) 18 (15.8, 27.2) 15 (83) –

Vitamin B6 (mg) 1.9 (1.6, 2.3) 14 (87) 1.5 (0.9, 2.1) 7 (88) 2.1 (1.6, 2.3) 16 (89) –

Vitamin B12 (μg) 4.2 (3.4, 6.1) 15 (94) 4.8 (3.5, 6.0) 12 (100) 4.3 (3.5, 5.7) 18 (100) –

Vitamin C (mg) 122 (55, 181) 13 (81) 74 (24, 151) 9 (75) 96 (53, 135) 15 (83) –

Vitamin D (mg) 3.0 (2.0. 4.9) 2 (13) 2.6 (1.8, 3.5) 0 (0) 3.3 (2.0, 4.5) 0 (0) –

Vitamin E (mg) 10.5 (6.4, 12.1) – 7.5 (5.8, 9.4) – 11.6 (9.3, 14.8) – –

Iron (mg) 11.8 (9.8, 13.5) 15 (94) 9.8 (7.9, 10.7) 7 (58) 12.6 (9.3, 15.2) 14 (77) –

Calcium (mg) 1002 (837, 1270) 14 (88) 870 (784, 1084) 10 (83) 979 (769, 1223) 15 (83) –

Iodine (mg) 177 (104, 247) 9 (56) 153 (98, 178) 7 (58) 162 (148, 191) 15 (83) –

Zinc (mg) 7.7 (6.6, 10.6) 6 (38) 8.1 (5.7, 11.0) 5 (42) 10.1 (8.3, 11.4) 12 (67) –

Magnesium (mg) 277 (233, 342) 6 (38) 259 (206, 292) 3 (25) 300 (277, 356) 9 (50) –

Potassium (mg) 2922 (2545, 3991) 5 (31) 2528 (2205, 3273) 2 (17) 3661 (2629, 3987) 11 (61) –

Note: Bold values are used to highlight p < 0.05.

Abbreviations: %E, percentage energy; IQR, interquartile range; RNI, reference nutrient intake.
a
Comparison between established ileostomy and reversal at ≥12 months using Mann–Whitney U‐test (macronutrients only due to small sample size).
b
In those who reported drinking alcohol only.
c
n = 7.
d
n = 6.
e
n = 10.
f
One portion fruit and vegetables = 80 g.
g
Total fluid = Intake24 estimates of water from all drinks, including alcohol, soup and milk on cereal.
 1365277x, 2023, 4, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/jhn.13168 by CAPES, Wiley Online Library on [22/09/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
1608 | THE DIET AFTER ILEOSTOMY STUDY

Reported energy intake at 6–10 weeks was 2217 kcal, participants reported receiving dietary advice by 6–10
and intakes of saturated fat and free sugars were high weeks post ileostomy formation, with one participant
(13% energy and 18% energy, respectively). Only three reporting receiving advice between 6–10 weeks and 1
participants (19%) met guidelines for saturated fat (<10% year. At ≥12 months, all except one participant with an
energy) and none for free sugars (<5% energy). Reported established ileostomy reported receiving dietary advice.
fibre intake was low (12 g), as was the reported fruit and In contrast, six (30%) participants who had their
vegetable intake (2.7 portions/day). Cakes, biscuits and ileostomy reversed had not received any dietary advice
high‐fat dairy foods (whole milk, cream and cheese) related to reversal.
contributed most to saturated fat intakes, and sugar‐ Further information on eating habit concerns is
sweetened drinks, cakes and biscuits contributed most to available in Supporting Information.
free sugar intakes. Low‐fibre starchy foods and vegeta-
bles contributed most to fibre intake.
Most participants (56%–94%) met requirements for DISCUSSION
most micronutrients apart from vitamin D (13%), zinc
(38%), magnesium (38%) and potassium (31%). This study found that participants reported a few, or
mild, bowel‐related symptoms 6–10 weeks after ileost-
omy formation and at least 12 months later. However,
Nutritional analysis in participants with food avoidance to control symptoms, especially avoid-
established ileostomy or reversal ance of a range of vegetables and fruits, was common,
although no single item was reported as problematic by
At ≥12 months, participants with an established ileost- more than 40% of participants.
omy had lower energy intake than those whose ileostomy Overall, for all groups, the reported intakes for
had been reversed (1662 vs. 2022 kcal, p = 0.028), lower nutrients were comparable to those reported in adults
absolute intake of carbohydrate (199 vs. 261 g, p = 0.025) participating in the 2020 NDNS follow‐up,16 with the
and lower intake of free sugar (43 vs. 67 g, p = 0.038), and exception of fibre intake for participants with ileostomies
there was some evidence of lower fibre intake (11 vs. 18 g, at both time points. Lower fibre intake was due to low
p = 0.057). Energy from saturated fat was higher in those fruit and vegetable intake. At 6–10 weeks and at ≥12
with established ileostomy (16% vs. 12%, p = 0.031). months, reported avoidance of fruits and vegetables was
Fruit and vegetable intake was low in both groups, reflected in low reported consumption (2.7 and 1.3
although participants with established ileostomy portions/day, respectively). Participants whose ileostomy
reported lower intakes (1.3 vs. 3.2 portions, p = 0.002). had been reversed reported higher fruit and vegetable
In those with an ileostomy, cakes and biscuits intake (3.2 portions/day), similar to that reported by the
contributed most to free sugar intake, with sugar‐ general population (3.5 portions/day),16 and conse-
sweetened drinks making a small contribution. In people quently a fibre intake that, although still lower than
whose ileostomy had been reversed, sugar‐sweetened recommended (30 g/day), matched the general popula-
drinks were the main contributor to free sugar intake, tion (18 g/day).
although cakes and biscuits were also a significant There have a been few studies examining diets in
source. In both groups, high‐fat dairy foods, and cakes participants with an ileostomy. Those that do exist have
and biscuits, contributed most to saturated fat intake. In also observed avoidance of fruits and vegetables. A study
those with an ileostomy, vegetables were the main conducted in Brazil7 in 2018, in 40 people with ileostomy,
contributor to fibre intake, whereas fruit and high‐fibre used a food frequency questionnaire and a study‐specific
starchy foods contributed most to fibre intake after food avoidance questionnaire and reported up to 27% of
reversal (see Supporting Information, Table S2). participants avoided vegetables (mainly due to concerns
Most participants (58%–100%) with established regarding odour, increased gas and increased output).
ileostomy met requirements for micronutrients, apart Fruit and vegetable intake was not reported, but at 27 g,
from zinc (42%), magnesium (25%), potassium (17%) and fibre intake was considerably higher than that reported
vitamin D (0%). After reversal, most participants by the UK population. A cross‐sectional survey of people
(61%–100%) met requirements for micronutrients except with stomas conducted in the United States in 201317
for magnesium (50%) and vitamin D (0%). included 174 participants with an established ileostomy.
Just over two‐thirds (67%) reported the ileostomy
affecting their dietary choices. The most commonly
Reported eating habits and provision of dietary avoided food was nuts (avoided by 27%), and the
advice majority of foods avoided by at least 5% of participants
were fibrous plant foods. Reasons for avoidance were not
Table 5 presents the provision of dietary advice and a well reported, but concern with gas, food being visible in
self‐assessment of whether people thought they were the bag and transit time were mentioned. No nutritional
eating enough to meet their needs. Sixteen (94%) analysis was conducted during this study. The only UK
 1365277x, 2023, 4, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/jhn.13168 by CAPES, Wiley Online Library on [22/09/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
ENGLAND ET AL.
| 1609

TABLE 5 Eating habits and dietary advice at 6–10 weeks post ileostomy formation and at ≥12 months, with or without reversala.

≥12 months (n, %)

Established
6–10 weeks ileostomy Reversed
(n, %) (N = 17) (N = 15) (N = 20)
Eating enough to meet needs (self‐estimation) p = 1.0a

Yes 14 (82) 15 (100) 19 (95)

No 2 (12) 0 0

Unsure 1 (6) 0 1 (5)

Received dietary advice

No 1 (6) 1 (7) 6 (30)

Yes 16 (94) 14 (93) 14 (70)

b
Main providers of advice (free text)

Stoma nurse 13 (81) 7 (70) 5 (36)

NHS leaflets 3 (19) 0 (0) 4 (29)

Colorectal nurse 1 (6) 0 (0) 2 (14)

Dietitian 0 (0) 2 (20) 0 (0)

Surgeon/gastroenterologist 0 (0) 0 (0) 3 (21)

Stoma supply company representative 1 (6) 0 (0) 0 (0)

Online (stoma supply companies, hospitals, 4 (25) 5 (50) 4 (29)

cancer sites and blogger)

Family member 0 (0) 1 (10) 0 (0)

a
Comparison between established ileostomy and reversal at ≥12 months using Fischer's exact test.
b
Several participants reported receiving advice from more than one source.

dietary intake study in people with an ileostomy was management.4 The review highlighted a need for
conducted between 1976 and 1977 by Bingham et al.8 examining the different role of soluble and insoluble
There have been substantial changes in food habits over fibres in ileostomy control, which none of the dietary
the past 45 years, but a reduction in fruits and vegetables intake studies, including ours, has done to date. The
was observed then as well. Participants with an ileostomy avoidance of fruits and vegetables did not appear to
reported consuming 2.6 portions of fruits and vegetables result in low micronutrient intakes in our study, except
a day versus 3.8 portions reported by matched controls. perhaps for potassium and magnesium. This finding
Foods were commonly avoided because they were visible requires further investigation because people with
in the stoma bag. ileostomy have higher losses of electrolytes, including
High‐fibre foods are reported to increase symptoms potassium and magnesium, and electrolyte disturbances
such as gas and odour and to be associated with are a common problem after ileostomy formation.18
complications such as blockage or high output. Conse- Unfortunately, available resources did not allow us to
quently, dietary advice is given to avoid specific higher‐ measure potassium or magnesium status in our partici-
fibre foods, especially fruits and vegetables.4 The most pants, and we did not have access to medical notes to
common reason for avoiding a food in our study was determine whether low potassium or magnesium was
that participants had been advised to avoid it. However, causing health issues. In addition, fruits and vegetables
both our study and previous dietary intake studies show contain other phytochemicals, such as flavonoids, which
that a few foods cause problems for more than half of are also important for health.
people with ileostomy (nuts, mushrooms, sweetcorn and Cross‐sectional BMI data indicated that most of the
fruit and vegetable skins appear to be most problematic). study population was unlikely to be experiencing mal-
It also appears from a Brazilian study7 that reduction in nutrition during ileostomy formation (mean BMI was
overall fibre is unnecessary for many people with 27.2), although 12% were estimated to be living with mild
ileostomy. However, a recent review of dietary manipu- to moderate frailty. BMI was measured only once, but
lation post ileostomy formation concluded that fibre over 80% of participants considered that they were eating
modification appears to play a key role in ileostomy enough to meet their needs at 6–10 weeks post formation
 1365277x, 2023, 4, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/jhn.13168 by CAPES, Wiley Online Library on [22/09/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
1610 | THE DIET AFTER ILEOSTOMY STUDY

and 97% at ≥12 months. This assessment is supported by bowel remaining or use of drugs such as loperamide were
dietary intake data, especially at 6–10 weeks and at ≥12 available, all of which affect ileostomy‐related symptoms
months in those who had reversal. Participants who still and symptom control.
had an ileostomy at ≥12 months reported a lower energy The use of self‐reported dietary data is a recognised
intake, but 1650 kcal is comparable to the energy intake limitation of dietary studies, with under‐reporting being
reported in adults participating in the 2020 NDNS follow‐ common. Intake24 and estimated food diaries are
up.16 Therefore, it appears that undernutrition was comparable, underestimating energy intake by about
unlikely to be a concern for most participants, especially 25%, and 2 days of recall appear to be adequate for
after reversal. However, intakes of cakes and biscuits were assessing habitual energy and macronutrient intakes at a
high, leading to a high intake of saturated fat and free group level.21 Estimates for micronutrients and less
sugars. In people with reversal, free sugar intake was commonly consumed food groups will be less precise.
higher, due to higher consumption of sugar‐sweetened Lack of reliable data for sodium intake is unfortunate
drinks. If maintained in the long term, diets high in because stoma nurses routinely advise people with
saturated fat and free sugars, and low in fruits and ileostomy to increase sodium intake. We were therefore
vegetables, are associated with cardiovascular disease and unable to check whether it was likely that advice on
poorer metabolic health.19 sodium was adhered to.
All except one participant with an ileostomy reported The questionnaires used were developed with advice
that they had received dietary advice. Participants were from members of a patient advisory group to ensure they
not asked details of the dietary advice, although they were relevant and easy to understand, but it is possible
reported avoiding specific foods because they had been that response options were interpreted differently by
advised to. It is important that dietary advice post‐ different people. The demographics indicate that most
ileostomy focuses initially on advice for ileostomy participants were White British (85%), most were male
function, and there is survey evidence that even this (78% at 6–10 weeks; approximately 67% at ≥12 months in
need is unmet.20 In the longer term though, for those both groups), despite about 47% of ileostomies being
with established, stable ileotomies and those with constructed in women.1 In addition, no socio‐economic
reversal, dietary advice may also need to include healthy status (SES) data were collected, but participants in
eating advice. After the initial healing period, at around research studies tend to be of higher SES.22 This,
6–10 weeks, people with ileostomy should be supported combined with the small sample size, limits the generali-
to increase consumption of fruits and vegetables, sability of the study.
depending on individual tolerance, and reduce consump-
tion of cakes, biscuits and other high‐saturated‐fat and
high‐sugar foods while maintaining energy and protein CONCLUSION
intakes.
The results from this study support conclusions drawn by
other studies that people with an ileostomy can eat a
Strengths and limitations varied diet. Food avoidance was common, but no foods
were reported by more than 40% of participants as being
This is the first study to describe the dietary intake and the cause of problems. After the initial healing period,
ileostomy‐related symptoms in people with ileostomy foods should not be automatically excluded unless found
and post‐reversal in the United Kingdom since 1982. to be problematic after reintroduction. Dietary advice for
When interpreting study findings, consideration should ileostomy management should be individualised based
be given to the fact that data were collected during on patient need, and long lists of food to avoid should
periods in the COVID‐19 pandemic when restrictions not be handed out to all patients as standard. There may
varied. Six participants of the 6‐ to 10‐week group be a need for appropriate healthy eating advice for both
provided data during the lockdowns of November 2020 people with established ileostomies and post‐reversal,
and January–May 2021, when indoor social mixing was targeting cakes, biscuits and other discretionary high‐fat,
highly restricted and non‐essential retail was closed. Data high‐sugar foods and supporting people to increase fruit
from other participants were collected as restrictions and vegetable consumption. Advice on drinks needs to
relaxed. be individualised for people with an ileostomy, but post‐
The findings are in line with previous studies reversal, people may need reminding that sugar‐
assessing diet in people with ileostomy, but due to the sweetened drinks should be minimised. Stoma nurses,
small sample size we were unable to explore associations who provide most of the dietary advice, may need
between symptoms and dietary intake or examine training in adapting healthy eating guidelines for people
longitudinal changes from 6–10 weeks to 1 year. We with ileostomy. There is a need for larger and longer‐
also did not have longitudinal anthropometric data, so term dietary assessment studies, which include anthropo-
we can only infer that participants were not under- metric and surgical data, to examine the dietary
nourished. No data on the surgical procedures, length of consequences of ileostomy formation.
 1365277x, 2023, 4, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/jhn.13168 by CAPES, Wiley Online Library on [22/09/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
ENGLAND ET AL.
| 1611

A U T H O R C ON T R I B U T I O N S 4. Mitchell A, England C, Perry R, Lander T, Shingler E, Searle A,

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1612 | THE DIET AFTER ILEOSTOMY STUDY

study on nutrition and health among individuals with a low

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AUTHOR BIOGRAPHIES
SUPPORTING INFORMATION
Clare England, BSc (hons), PhD, RD, is a dietitian Additional supporting information can be found online
and honorary research fellow. Her research interests in the Supporting Information section at the end of this
focus on improving the understanding, and nutri- article.
tional management, of clinical conditions.

Alexandra Mitchell, BSc (hons), MSc, MRes, PhD,

How to cite this article: England C, Mitchell A,
RD, is a research dietitian with research interests
Atkinson C. Diet After Ileostomy Study: an
focusing on dietary management and provision of
observational study describing dietary intake and
nutritional care in clinical practice.
stoma‐related symptoms in people with an
ileostomy. J Hum Nutr Diet. 2023;36:1600–1612.
Charlotte Atkinson, BSc (hons), PhD, is an honorary
https://doi.org/10.1111/jhn.13168
senior research fellow in nutrition. Her research interests