A GUIDE TO LIFE AFTER
OESOPHAGEAL/GASTRIC SURGERY
(Oesophagectomy/Gastrectomy)
CONTENTS
1.
Introduction
2.
The Operation
-
Oesophagectomy
-
Gastrectomy
-
Keyhole Surgery
3.
Speed of Recovery
4.
Eating and Drinking
-
Swallowing
-
Appetite
-
Mealtimes
-
Little and often
-
Drinking
-
Gaining weight
5.
Some Possible Problems
-
Dumping Syndrome
-
Gastric retention
and sickness
-
Food Sticking
-
Acid
Regurgitation (reflux)
-
Flatulence
-
Diarrhoea
6.
Summary of Nutritional Guidance
7.
Lifestyle After Surgery
-
The first few
weeks
-
At home
-
Driving
-
Eating out
-
Sleep
-
Psychological
effects and support
-
Relationships and
sex
-
Smoking
-
Getting back to
normal
-
Three to six
months on
-
Back to work
8.
Appendix - Healthy eating
- Adding calories
-
Snacks and small
meals
-
Nutritious drinks
-
After recovery
1. INTRODUCTION
You have had a major operation and feel that life can never be
the same again. It can, with slight modifications, and it can be a very good life.
The objective now must be to learn to live with the changes in
your system so that they affect your quality of life as little as possible.
In the
You may wonder, in the early
days, if you will ever recover from this operation which has left you feeling as if you
have been under a steam roller. Initially you will need a lot of rest and may feel exhausted by
the slightest exertion, but you will notice a gradual improvement. Your recovery will take place over a number of
months and some people will take longer than others.
This booklet will help you.
It is based on the experiences of people who have had the same operation as you,
with valuable input from health professionals.
2.
THE OPERATION
Oesophagectomy
This operation involves removal of part, or most of the
oesophagus (gullet) and part of the stomach, the amount of each varying according to the
position of the tumour. The stomach is then moved into the chest and joined to the
remainder of the oesophagus. The join may be near the neck or slightly lower and all or
only part of the stomach may be in the chest. To help healing of the join you may have
been fed in hospital through a tube up the nose and into the stomach, or perhaps directly
into the small intestine (the jejunum) where most of our digestion of food takes place.
Gastrectomy
In this
operation, if all of your stomach has been removed (total gastrectomy), the top
part of the small bowel (the jejunum) is joined on to the bottom of the gullet
(oesophagus). If only part of the stomach has been removed the small bowel is joined to
the remaining part of the stomach. This means that the food you eat will pass almost
immediately from the stomach into the small bowel. As
after oesophagectomy, to help healing of the join you may have been fed in hospital
through a tube up the nose and into the stomach, or perhaps directly into the small
intestine (the jejunum) where most of our digestion of food takes place. In the future you
will need to have regular injections of vitamin B12 from your GP.
Ask your clinical/medical team for
more detail if you need to better understand your condition. You may find that a clearer
understanding will help you cope.
Keyhole surgery
Some people have part or all of their surgery performed using
keyhole surgery. This means that although the same operation is performed you do not have
a large wound. You may therefore recover more quickly, but you should remember that
although there is little to see on the surface your body still has to recover and heal and
this will take time.
Recovery from a major operation involving digestive organs is
not fast. It can take months for the digestive
system to adapt after surgery although some patients are quicker than others. It will be
some months before you are at your peak again and you will have off days along the way.
Try not to be impatient - enjoy the new lease of life.
Initially you will feel very tired, possibly exhausted at times
and plenty of rest is needed. Sometimes the tiredness may come on very quickly; don’t feel
you have to fight it An afternoon nap in bed
is helpful for the first 5/6 weeks to prevent you getting overtired, or you may
find you need to go to bed for several hours during the day and still need to go to bed
early in the evening. Take some gentle
exercise as soon as you can - walking to start with for just a little further each day -
it will help stimulate the appetite. It will also stimulate your breathing, helping the chest to expand and restore
its suppleness.
Diarrhoea can be a problem from the early days (see the section
on this below). You may also have a dry cough, perhaps when talking a lot or too loudly.
This can be helped by sipping a cold drink or sucking a boiled sweet. It disappears in
time, but may take a year or more.
4. EATING AND DRINKING
Depending on exactly what surgery you have had, you may now have
no stomach at all, or you may have a much smaller stomach. This means that you no longer
have the capacity for large amounts of food, but this may gradually increase. The
digestion process will be different and it will take a while for you to become used to
this. You will feel “full up” more quickly, but the sensation will probably be
different. At first it will be easy to over eat and it
will take you a while to judge when you have had enough.
You will also find that your sense of taste keeps changing during the initial
weeks. You may find that one week you like something and the next you don’t. Keep
eating a wide variety of foods.
SWALLOWING
The act of swallowing should not be impaired but some
trepidation about food entering the ‘new arrangements’ can make it feel a little
difficult and lumpy at first. Staying on a
liquid diet should not be necessary. Gradually
move onto a normal diet as you feel able. Avoid
hard or sharp food pieces during the first six weeks, but well-cooked meat (white in
particular) can be included as well as fish without bones.
You should be able to manage a normal diet within about six weeks to three months. However, crispy foods such as crispbreads
and toast may be easier to manage than soft bread since they don’t absorb as much
saliva and become a doughy mass.
Do not be alarmed if
in the early weeks you have problems with swallowing. This often occurs due to the join
being swollen and tender. See under “Food Sticking”
APPETITE
Many people find they have poor appetite during the early stages
of recovery so concentrate on things you like. Initially
your sense of taste may be affected with food and drink not tasting of much and possibly a
bit unpleasant. You may prefer more sweet or savoury foods than you did before. As said
earlier an operation on the digestive system does have major effects, but these vary from
one person to another so different solutions are needed. Something not easily digested or
liked in the early days may become so after a while. There may have been certain foods or
drinks that did not agree with you in the past for whatever reason and these are not
likely to change following surgery.
Stimulating the appetite
A small drink of sherry or other aperitif, or even a small beer,
before a meal may help to stimulate your appetite and improve taste.
Relax and avoid rushing meals.
Try using a smaller plate and serve meals which are attractive
and colourful.
If you are too tired to prepare a meal, have a ready meal
instead.
If food has no taste, try highly seasoned or marinated
food.
If hot food upsets you, eat it at room temperature or
cold.
If you find cooking smells a problem, avoid the kitchen or use
cold or microwaved foods. Perhaps someone else can prepare
your food for you. However, for some, the smell of food will tempt the appetite.
If you do not feel like eating you may supplement a snack with a
milky drink; you can fortify the milk by
adding dried milk powder to it. Alternatively,
have a food supplement or try one of the nutritious drinks listed in the appendix.
MEALTIMES
In the early days talking during meals may affect ease of swallowing. You may like to sit at the
table to eat, or prefer to sit in an armchair with a tray on your lap. Some people find it easier to eat with a
distraction such as reading or watching TV. Sitting upright helps to avoid any tendency to
choke on food.
A microwave oven is useful for reheating food which has gone
cold, as may happen if you are eating slowly.
Sit for a while after a meal.
LITTLE AND OFTEN
The key to eating well after surgery is not to eat large meals,
but to eat smaller amounts regularly. You may find this difficult at first, but try to eat
SIX times a day; three small meals and nourishing snacks in-between. Eat slowly and
chew your food well. This will help you digest your food and prevent you feeling full too
quickly. You will feel uncomfortable if you
eat too much at one time. You will gradually get to know what is the right amount for you.
Eating more frequently can be a pleasure - biscuits with coffee
in the morning; a scone or cake with tea in the afternoon; a gap between courses of the
main meal of the day be it
Drinking is important and you should make sure that you drink
plenty of fluids. However, you must be
careful not to fill yourself up before or during a meal or you will not want to eat your
food. When eating, just take sips of fluid.
There is no reason why alcohol should not be taken but the
effect may be felt a little earlier than hitherto - so beware! Moderation in all things! (Remember certain medicines can react with alcohol
- look at the label).
Often people have lost weight prior to surgery and it is quite
common to continue losing weight after leaving hospital, maybe for some months, and many
people never return to the weight they were prior to their illness. You will establish a
new ‘fighting weight’ in due course. It may take a long time - a year or longer
- and by eating little and often you should be able to maintain a good calorie intake.
However, if you feel that you need to gain weight there are ways of adding calories to
food. See appendix.
5.
SOME POSSIBLE PROBLEMS
Following your operation it will take
your body a while to settle down and you may initially encounter some unexpected
experiences. Most of these will subside with time. For
instance, if milk seems to be making you ill you can use soya
milk instead but consult your dietician as you may need to add a food supplement to
maintain your nutrition levels. Keep trying a
little milk as the problem should not last more than a few months when the enzyme needed
to digest milk starts being produced again.
DUMPING
A sensation known as Dumping Syndrome occurs when the food you have eaten passes rapidly through the system and may
give rise to some of the following symptoms: dizziness, possibly fainting, feeling very
hot, sickness and pain in the abdomen. Diarrhoea
or frequent bowel movements may follow. It
can be unpleasant and distressing, but is not serious and generally the frequency of
attacks becomes less. The effects normally
disappear in half an hour or so. For
oesophagectomy patients it generally occurs an hour or more after eating (late Dumping). Those who have had a gastrectomy may be more prone
to dumping, and this may occur sooner after eating (early Dumping).
In late dumping the sugar
content of the food or drink causes insulin to be released by the pancreas. A slight excess of this gives rise to the feelings
and some patients have found that quickly having a glucose tablet or sweet can relieve the
symptoms
Dumping is a fairly complex
subject and we have factsheets available which give more
detail.
GASTRIC
RETENTION AND SICKNESS
Conversely, food can sometimes remain in the stomach rather too
long, causing you to feel sick and bloated, with burping.
This may occur as you begin to eat slightly bigger meals. It is very common and your GP
will be able to give you a medicine (for example,metoclopramide
or domperidone) which you should take half an hour before each main meal to improve the
motility of the system. You will not need it forever - just until the body gets used to
the new arrangements. Major nerves are severed in doing the operation and this is the
cause of the problem.
If you suffer more persistent sickness which is not relieved by
the above medicines mint or ginger products, the traditional remedies for nausea and
sickness, may be helpful.
FOOD
STICKING
If you feel that a little food is stuck, try a fizzy drink,
which may help to loosen it. If food does become stuck for more than a couple of hours
ring for advice from the ward at the hospital where you were treated. Normal eating of
solids should not be a problem, given that they are well chewed and obviously not too
large.
After surgery scar tissue at the join in the oesophagus may
restrict the flow of food or even cause it to stick. This can be worrying and a reminder
of the original trouble but it is alleviated fairly easily by dilating it a little in
hospital. It is a routine procedure and may only have to be carried out once but a few
patients need to have it done several times in the early months. Do not persist with the
problem too long; it is better to treat it early. Consult your doctor/ surgeon if you feel
this aspect could be improved.
ACID
REGURGITATION (REFLUX)
Sometimes an extremely unpleasant feeling in the stomach may
come over you for a short while, particularly first thing in the morning. Although there
may be no acid burning in the throat the trouble appears to be caused by acid in an empty
stomach. The remedy is to spit out as much fluid as you can or, if caught in time, drink
some water to dilute the effect and encourage
it to go downwards. It should become less frequent in time, but there may always be a
possibility of it occurring.
Keeping some food in the system may help to prevent acid or bile
from the stomach area actually encroaching on the throat and even into the mouth, which is
very unpleasant. It occurs most commonly at night or in the early morning. Some food in
the stomach or gut helps to absorb the acid and there are also medicines which can help to
prevent its regurgitation (prokinetics) or reduce its
formation (proton pump inhibitors - PPIs). Mints or ginger biscuits may make you feel more
comfortable.
Extra pillows or raising the bed head by about 4 - 6 inches with
blocks of wood or a house brick can be very beneficial, and a pillow under the knee area
may prevent slipping down during the night. Electric beds are now available much more
cheaply than in the past. If you have had an oesphagectomy, whether you sleep flat or propped up may be affected
by the position of the join between the remainder of the oesophagus and the smaller
stomach. The higher this is the less reflux may be experienced.
FLATULENCE
You will probably experience a tendency to burp rather more than
before. Sometimes it can almost be involuntary but with practice some control is gained
and embarrassment can be avoided. Discomfort is relieved and it has to be tolerated since
it may remain a long-term effect. You may also find that wind gets trapped in the stomach
area. This can be painful and worrying, but it does improve fairly quickly.
DIARRHOEA
Due to the surgery you may suffer from diarrhoea, particularly
in the first few months after the operation. It may be accompanied by rather severe
colicky pain.
This problem
generally eases in time and medicine from your GP can help, but it often seems to occur
for no apparent reason, i.e. it cannot be related to anything you have eaten. You could take a note of what you have eaten that
day, just to see if it is food related. It may be wise to reduce intake of high fibre
foods and milk for a day or two while affected, i.e. less fruit, green vegetables, pulses
(beans and lentils), high fibre cereals and wholemeal bread. A diet with more meat, fish,
eggs and potatoes is likely to be useful in controlling the condition. It’s a
nuisance but don’t worry about it, and learn the method of control that suits you
best. Diarrhoea can have other causes of course. See your doctor if it persists.
6.
A SUMMARY
OF NUTRITIONAL GUIDANCE
Try to eat often –graze throughout the day.
Sit upright, eat slowly and chew your food well, this will help
you digest your food and prevent you feeling full too quickly. Eat soft food (not
liquidised) for 4-6 weeks following surgery. Then, normal consistency should be suitable.
Ordinary bread can be a problem for a while - try toast, crackers or crisp breads.
Sip a drink with food if you like, but don’t drink much
before meals – it will fill you up. A small aperitif may help such as sherry.
What you like is best – it stimulates the gastric
juices.
After eating sit still for half an hour and don’t bend down
soon (you may regurgitate your food)
Your last snack of the day should be at least an hour before bed
– it can help to absorb stomach acid.
.
Food supplements (on prescription) can be useful – good
nutrition in small volume – find ones you like. There
are many – ask your dietician.
Do not put too much emphasis on weight gain – it will come
in time. It is normal to lose weight after surgery, as you will not eat much for a few
weeks. Then it should become stable and gradually increase, but not usually to your
original weight. If you are still losing weight after two months or if food sticks on
swallowing, speak to your specialist nurse or consultant.
If you have no appetite speak with your doctor – a short
course of steroids may help.
Further ideas for food are in the appendix.
Some patients find probiotics
(eg Yakult, Actimel, etc) helpful
with reflux and digestive problems.
7. LIFESTYLE AFTER SURGERY
Your aim after getting over your operation may be to become
fitter than you were before. However, in the immediate post-operative period, exercise is
the last thing you feel capable of doing. Muscles, bones and organs have all been affected
in the chest, abdomen, and often the throat. Recovery takes some time; if you were working
you are going to be off for some months and it could be more than 12 months or so before
you are really at your best, although hopefully you will feel pretty well long before
that.
THE FIRST FEW WEEKS
You start exercising very quickly after the operation; the
physiotherapist has to get your lungs going again, expelling fluid that can gather as a
result of the operation and anaesthetic. This is a rather painful process but effort put
in at this time is well worthwhile. As you get
out of bed and feel so weak you see the challenge. Walking (or staggering) is about all
you can do at this stage. Any effort exhausts you and going up stairs is like climbing
Everest, but try walking a little further each day and it will get easier.
Progressive exercise
during this early period should be taken by increasing speed or distance - not both. Bear
in mind that outdoor walking is more difficult - there may be slopes, a wind and heavier
clothing to wear - and don’t forget the return journey!
Look after yourself at this stage, not the housework. Continue
the breathing exercises given in hospital - six deep breaths each held for a count of 3
and gently exhaled. Do this 5 or 6 times a day. It can be done sitting up straight or
standing. (If there is still sputum coming up you may have been given extra exercises to
do - don’t neglect them).
AT
HOME
Progress may seem slow, but pushing it too hard will possibly do
more harm than good. Don’t try to prove anything; it’s not worth it, the body
will take its own time. During this early stage coughing, perhaps occasional sickness, and
movement generally will be painful and you may feel that things will come apart inside. Be
assured - they will not. If you have had an open oesophagectomy the ribs do take time to
repair and it will be a month or two before you can sleep on the side affected. Muscles
too have been stitched together but these heal
well in about two months; bones and cartilage take rather longer. Nerves, which are
necessarily severed in any operation, repair very slowly indeed and some areas around the
wound may remain numb.
Surface pain at the wound may occasionally occur for years.
Nothing to worry about - it’s the raw nerve endings.
You may feel able to tackle the odd bit of housework after a few
weeks but don’t aim to complete it all in one go.
You may find that your ability to concentrate has been affected. This can be very frustrating, but it will gradually
return. It may help to take up a new hobby
that is not so demanding while you have got time on your hands.
DRIVING
It is probably wise to inform
your motor insurance company that you have undergone major surgery before you start
driving again. You must be capable of
performing an emergency stop. Have a practice
run first. There are mental as well as
physical aspects to consider and you must feel safe. There
will be some pulling on healing muscles, depending on the size of car and ease of
steering.
EATING
OUT
Eating with others is a very social occasion and there is no
reason why you should not continue to do this. Friends
and family should be aware that you only eat small portions, and in a restaurant ask for a
child’s portion or have a starter as a main course.
Do not worry about leaving food. If you wish you may explain to a member of
staff that it is no reflection on their cooking, but you do not have to do this. The
Oesophageal Patients Association has produced a card which states that for medical reasons
you can only eat small portions.
SLEEP
SMOKING
GETTING
BACK TO
You should be seen by your surgeon within two months of your surgery. Further appointments may then be made but some hospitals leave it to the patient to make contact if they feel the need. Clinic procedures also vary; some doctors will always examine you but others only do so if there is a problem. It is natural for you to worry about the cancer recurring but in time your confidence will grow. If you have any concerns see your GP or contact your specialist nurse.
THREE
TO SIX MONTHS ON
We are all individuals but somewhere within this period you
should be able to tackle exercise. Perhaps swimming, which is a very good exercise for all
ages. Take someone with you to give you confidence and the benefits will soon show. For
the non-swimmer (though it’s never too late to learn) walking is good all round
exercise as long as you walk far enough and at a fair pace. Cycling and dancing are also
suitable as they need not be too strenuous, and as you become stronger any sport that you
enjoy can be added, but don’t start with competitive games like squash and badminton
and avoid lifting weights. These and sports like running can be added later (up to
marathon standard if you are really determined - one of our former patients has run
several). If you were previously overweight, now is your chance to keep that new slim
figure by taking up a sport that you used to find too energetic.
Activities which involve bending down may cause acid
regurgitation. This would apply to some yoga exercises and to gardening (usually weeding)
where it can be avoided by squatting or kneeling, and using long-handled tools.
The most important things about exercise are that it should be
taken regularly, be strenuous enough to make you puff, and be enjoyable.
BACK
TO WORK
The timing of a return to work depends on many factors; age,
type of work, effort put into regaining fitness. In any event it may be some months before
you do, but we are all individuals. Heavy work makes more demands and might in fact not be
suitable if much bending and lifting is involved. Hopefully your employer may be able to
help by using your skills and knowledge for lighter work. Initially travelling in rush
hour traffic may be stressful and shorter hours for a few weeks will enable you to
“run in”. Remember to plan to be able to take nourishment when you need it -
little and often. Remember too that for some time you may tire more quickly so if driving
or working with machinery is involved extra care and planning may be necessary.
8. APPENDIX - HEALTHY EATING
ADDING CALORIES
Add extra
sugar or glucose to drinks, cereals, desserts and fruit.
Add honey,
syrup or jam to porridge and desserts.
Melt butter
on vegetables, meat and fish and add to sauces and milk puddings.
Add grated
cheese to mashed potato, vegetables and soup.
Have
mayonnaise on salads and in sandwiches, cream in soups, sauces and desserts, and cream
cheese on bread and biscuits.
Put minced
meat or flaked fish into soups.
Make
fortified milk (4 tablespoons milk powder mixed into a pint of milk) and use this for your
drinks and in cooking in porridge, sauces, soup and milk puddings.
SNACKS
AND SMALL MEALS
Keep snacks
to hand so you can nibble throughout the day.
Nuts, Bombay
mix, pasteurised cheese, pate, peanut butter, biscuits, crackers, breadsticks, dips –
such as hummus or tarasamalata, crisps, nachos, tortilla
chips, pepperoni, cheese dippers.
Fresh and
canned fruit, popcorn, yoghurt, muesli bars, chocolate, sweets, dried fruit, breakfast
cereal eg crunchy nut cornflakes.
Teacakes, muffins, crumpets, croissants
Sandwiches
These can be
made from sliced bread, toast, bagels, baguette, chapatti or pitta
bread. Fill with cold meats, tinned fish, pate, dhal, hummus, egg, bacon, cheese or peanut
butter. Add mayonnaise, pickles, chutneys, salad or avocado to make them more interesting.
On toast
Baked beans,
cheese, sardines, eggs – poached, scrambled or fried. Add plenty of butter or
margarine and top with grated cheese.
French
toast (eggy bread) or omelette.
Add cheese /
mushrooms/ ham
Jacket
potatoes
With butter
and fillings such as cheese, beans, tuna mayonnaise, chilli con carne, coleslaw,
bolognaise sauce, hummus or sour cream.
Ready
made meals
Can be
frozen, chilled, tinned or boil in bag
Nutritious
Soups
If having
soup as a meal, choose one that contains meat, fish, cheese, lentils peas or beans. Make soup with milk or add cream and serve with a
roll.
Pasta
Instant or microwaved pasta with added cheese or ham
Puddings
Milk
puddings such as rice or semolina. Add jam, fresh or tinned fruit or cinnamon and sultanas
and brown sugar. Thick and creamy or custard style yoghurt, fromage
frais, fruit mousse or fool, trifle. Tinned sponge pudding,
jelly with
tinned fruit and ice cream or cream. Add raspberry or chocolate sauce. Hot or cold
pie or crumble with cream, ice cream or custard. Waffles or pancake with maple syrup and
cream or ice cream. Cheesecake or sweet pastries with cream.
Baked apple
or banana with brown sugar and sultanas. Serve with custard, cream or ice cream.
Whisk a
small tin of evaporated milk into a cooled jelly made with 1/2pt water to make a milk
jelly.
Use custard
and stewed or pureed fruit to make a fruit fool.
Banana and
chocolate or other confectionery can be chopped into Angel Delight.
Full fat
Greek yoghurt with honey and soft fruit. This can be topped with brown sugar and grilled
to make crème brulee.
Adding cream
to any pudding will boost the energy content. For convenience try aerosol creams. These
keep well in the fridge. Long life cream is also useful.
NUTRITIOUS DRINKS
To tempt the
appetite, serve chilled in a tall glass or tumbler with a straw.
Milkshake
1 cup milk
1 packet
Build Up or Complan – flavour of your choice
1 scoop ice
cream
Blend all
ingredients together and serve.
Fruit
Milkshake
1 cup milk
1 cup tinned
fruit (drained) or fresh fruit
1 packet
vanilla Build up, Complan or full cream milk
1 teaspoon
sugar (optional)
Liquidise
the fruit. Add other ingredients. Blend and serve.
Coffee
Calypso
1 cup milk
1 packet
Build up, Complan or full cream milk
1 teaspoon
instant coffee (vary amount according to your taste)
1 scoop ice
cream
Dissolve
coffee in a little hot water. Add to other ingredients. Blend and serve.
Choc-mint
surprise
1 cup milk
1 packet
chocolate Build up or Complan
2 table
spoons single cream
Few drops
peppermint essence (vary to taste)
1 scoop ice
cream
Blend or
whisk all ingredients together except the ice cream. Pour into glass, add ice cream and
serve.
Yoghurt smoothie
1 pot full
fat yoghurt, flavour of your choice
1 banana
1 packet
Build up or Complan
1 cup milk
1 teaspoon
sugar (optional)
Blend all
ingredients together
Sherbet
fizz
1 packet
vanilla Build up, Complan or full cream milk
1 scoop ice
cream
150mls
lemonade
Blend all
ingredients together and serve immediately
AFTER RECOVERY
It can take
up to six months for the digestive system to adapt after surgery. When you feel fully
recovered from your operation and you are more fit and active you may want to return to a
lower fat diet and include more fibre, fruit and vegetables.
If you are
still losing weight or experiencing difficulties with eating at this time, contact your
dietician or GP.
The balance of good health plate
ACKNOWLEDGMENTS
We
gratefully acknowledge the contribution of consultants, research nurse, clinical nurse
specialist and dieticians, together with former patients in compiling this booklet.
Particular
thanks to the Trustees of United Bristol Healthcare Trust who funded work in