We have grouped these tips under broad headings, and hope to be able to extend these by adding in further tips, and the answers to questions that may not be included here.   So, please contact us:

• if you have a suggestion which has helped you that you would like to share with other oesophageal patients, or
• if you have a question that has not yet been included on this website.

We will do our best to post up your contributions as soon as we can!

You may also wish to use Food Tube Form - an internet bulletin board.

Reflux   Abdominal Cramps    Dizzy Spells     Food Ideas      Stents      Milk   Top

Feeling low    Food not tasting right   Burping and/or excess spittle   

Eating grey 'sloppy' meals?       Toothpaste      Eating Out    Medication tips

Other remedies     Pillows & mattresses    Iron levels  Increasing iron in your diet

Reflux

• Night time acid reflux is a common experience for oesophageal patients.   Because we sleep horizontally, gravity no longer helps to keep the acid confined to our stomach.   Apart from the distress and the burning sensation, the acid is bad for your oesophagus as, unlike the stomach, it is not designed to cope with it.
•  Have your bed head raised about 4 to 6 inches. Planks of wood or even piles of old magazines have been used for this purpose. If you are away from home, ask for extra pillows and put them underneath the mattress to raise your head. If you can afford it, an adjustable bed is a wonderful solution.
• Staying propped up in bed rather than slipping down is quite a problem.   A memory foam mattress topper might help (eg from Dunelm Mill - tel: 08451 656565  www.dunelm-mill.com)
• It is also possible to buy a wedge shaped pillow.    Some of us have found that the shaped pillows designed to keep the spine in correct alignment, also keep the head from 'lolling over' to the side during sleep.
• Occasionally, your sleeping position may affect things (eg sleeping on one side rather than on your back).
  When, in spite of your efforts to avoid it, you do suffer from reflux, try taking gaviscon or similar anti-acid tablets available from the chemist.   Some find that the only things to relieve the throat pain are a warm cuppa, and/or a sore throat pastille.  

• Sometimes, regurgitation occurs 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.  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.

• 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.

• One patient who had suffered reflux for many years after his oesophageal surgery had his pyloric sphincter stretched at St Thomas's hospital, and it solved the problem (BK).   (The pyloric sphincter is at the base of the stomach at the duodenum end;  the sphincter at the top,  oesophagus end of the stomach is the cardiac sphincter).

Back to top

Abdominal Cramps

• Alka Seltzer can often cure those awful abdominal cramps.

Dizzy Spells

• If you suffer from occasional hypoglycaemia (dizzy spells), these may be caused by food rushing too quickly through your digestive system. Take two Dextrose/Glucose ‘sweets’ (available at the well-known High Street chemists). These may shorten the attack and relieve the symptoms.   See Dumping Syndrome

Toothpaste

All adult toothpaste and mouthwashes contain mint - which burns if you have had radiotherapy.   But radiotherapy can make your teeth more prone to disease.   Try children's (strawberry) toothpaste and bubble gum mouthwash which do not burn (MB).

Food Ideas

There are recipes and ideas in:

• 'A Guide to Life after Oesophageal/Gastric Surgery'
• 'Swallowing - Nutrition when it's difficult'
• For a collection of recipes and ideas from oesophageal patients and carers in the UK and the USA click here.

• Natural bio (live) yoghurt replaces the natural bacteria in your stomach (which you’ve lost during treatment) and helps with digestion and acid problems.

• Add ‘Build Up’ to Angel Delight or other whips.

• Don’t eat anything for about four hours before bedtime.
 

 A snack can consist of as little as one banana. You don’t have to eat five meals a day - small snacks will suffice. Try to eat quite often - 'graze' throughout the day. As soon as you can, (and your doctor says you can!) extend your diet and try to eat 'solid' foods. You have to re-train your digestive system after an oesophagectomy. This is rather like feeding a baby, gradually getting used to different foods. Most find that they make great improvements in time. Some of us are more or less 'normal' after a year or so. (Perhaps sooner- everyone varies in this.)

• Popcorn is really easy to eat and swallow, but avoid the very sugary types as sugar promotes acid.  You can make your own using a lidded pan, or there are now special microwave packs available in most supermarkets.

• Toast is easier to eat than bread, which tends to stick. However, some may find that French bread is easier than English.

• After eating, sit up straight, use cushions if necessary, for an hour or so. If you are experiencing great difficulties it might help to stand up or walk slowly around the room. Try to relax when eating - use soft music or a small glass of wine. Never eat when you are agitated.

• Remember to chew, chew, chew. Much more so than most people. Use the built in food processor in your mouth, your teeth. This makes you a slow eater, but at least you will be able to eat more of what you like. Your eating ability will gradually improve until you find you can eat many more things. Most people find that they can attain a near normal situation eventually.

Grey, sloppy meals!

If you are regularly eating liquidised or blended food, you soon realise that it all becomes a bit grey-looking after a while.   To restore some variety of colour, try whizzing meat (or fish) separately, then doing the same for different vegetables, and then freeze them in separate small containers.   In this way you can have the contents of several smaller containers on your plate and restore some of the conventional food patterns to make it look a bit more appetising on the plate.

Eating Out

Ask us for one of our restaurant cards available in a number of languages, requesting small portions.

Take a small jar of your own preferred gravy granules so that the restaurant can make up your own gravy for you for your meal (MB).

Back to top

Stents

Modern stents (tubes) are made of a wire mesh, generally covered with a thin material. They are easy to insert being encased in a pencil-thin sheath before release opposite the constriction. They usually cannot be taken out again. They come in different internal diameters (usually 9-12 mm) and lengths to suit individual needs. Generally they are held in place by the constriction they are opening up.   Sometimes fibrous foods can catch on the wire mesh, and this is why there are guidelines on what to eat.    Sipping fizzy and warm drinks during and after eating can help to keep the stent clean and free from food residue.

If you are about to be fitted with a stent (or even afterwards), ask your surgeon to show you one, as this can help you understand how they work.  

Looking after the stent:                   

• Don’t rush eating.

• Have soft food in small mouthfuls and chew it well.

• Drink a little during and after meals - fizzy drinks are helpful.

• Sit up straight when eating.

• Don’t tackle large lumps of food - cut them up small and chew well.

• Spit out anything not chewed.

• Mix food supplements such as Complan very thoroughly - dry powder will block the stent.

• If you feel the stent is blocked stop eating, drink a little and walk around a bit.

• If the blockage persists for more than 3 hours ring your GP or contact the hospital where you were treated.

• Clean the stent after eating with a drink of soda water or lemonade or use this mixture:

4oz sugar

2oz cream of tartar

2oz sodium bicarbonate

Use one teaspoon of the mixture in a half tumbler of water.

• Keep teeth and dentures in good order so that chewing is effective.

 Foods to avoid:            

• Green salads and raw vegetables

• Fried egg white and hard boiled egg

• Fruit skins and pith of grapefruit and orange

• Tough meat and gristle

• Fish with bones

• White bread, crusty bread and toast

• Shredded Wheat and Puffed Wheat

• Hard chips and crisps

• Nuts and dried fruits

Back to top                           ***

Medication tips

If you are taking paracetamol suspension (250mg / 5ml), consult your doctor or pharmacist before taking this (over the counter) medicine in conjunction with metoclopramide and domperidone (used to treat nausea and vomiting) (JW).

Other remedies

One member has found that Slippery Elm (in capsule form) coats your gut wall and soothes your bowel, thus easing the symptoms of colitis, IBS< constipation and diarrhoea (GA).

FREQUENTLY ASKED QUESTIONS:

Breakfast cereal and drinking milk

Q:   Following my oesophagectomy, I often feel sick having eaten cereal for breakfast, but not after any other meal.   Why is this?

A:  In most oesophagectomies, part of the stomach is removed.   The stomach produces an enzyme called lactase, the sole function of which is to break down lactose (a substance found in milk).   Without this enzyme, drinking milk can be an uncomfortable experience, causing bloating, nausea, stomach cramps and diarrhoea.   If your post-op stomach in not producing lactase, you have probably developed this lactose intolerance.   Try leaving milk out of your diet (for at least four weeks), then gradually re-introduce it.   Former patients have found that they are able to tolerate milk again in this way.   As an alternative, lactose-free milk is also available at major supermarkets.

Feeling low

Q:   It is now a few weeks since my operation.   Suddenly I am feeling very low and that my recovery has slowed.   I am very tearful and my family do not seem to understand.  they expect me to have 'got over it by now'.   Am I being too optimistic that I should be feeling normal by now?

A:   What you are experiencing is very normal at this stage of your recovery.   Your body has had a very traumatic experience and is not by any means yet fully healed.   The intensive support you had from the medical team and the attention from your family straight after the operation has now diminished.   This all leads to a feeling of isolation.   Explaining to your family and friends exactly how you are feeling may help them to understand a little more clearly.   Following any major surgery there is always the possibility of depression.   We are hoping to be able to publish a more comprehensive answer in due course. You may be interested in 'Oesophageal Cancer - Coping with Symptoms and Worries'

There is also a very useful article by Dr Peter Harvey for the Cancer Counselling Trust entitled 'After the treatment Finishes - Now What?'.   He discusses the need for recuperation, convalescence, regaining trust in your body, living with uncertainty, returning to work, and many other issues.

Back to top

Food has no taste - or tastes 'tinny'

Q:   My food often has no taste, or tastes 'tinny'.   Will this unpleasant taste go away?

A:   As with most of these problems, it should improve after a while.   In the meantime, try a small sherry before you eat, or a thimbleful of port swished around the taste buds and swallowed.   This should stimulate them into action and make your meal more enjoyable. Try adding extra sauces to your food, using chutneys, sweet chilli sauces, mustard or ketchup.   Fresh herbs can also liven up a meal. 

Q:   What about food tasting awful after my operation?

A:   An oesophagectomy is a major operation which can affect the body as a whole, so sometimes taste buds can be affected.    Nerves affecting saliva and the the taste buds may have been cut during the operation, and it takes time for these to settle down again, and for the brain to be re-trained to manage and not resist the new arrangements.   A period without swallowing food can also affect the taste buds.  One surgeon recommends natural yoghurt as something that can help restore taste buds to normal.   We know of one case where a patient who felt that food tasted 'like dog's mess on cardboard' had her experience of food transformed after hypnotherapy.   The system does adjust again after a while, and you should try and persist, even if food does not taste right at the moment.

Burping and/or excess spittle

Q:  I am suffering badly from burping and/or excess spittle.   Is there anything available to help me?

A:   It sounds as if you may need one of the motility drugs which will help get everything moving properly in a  downwards direction.   Please consult your GP who may be able to prescribe such a drug eg metoclopramide (maxolon),  or domperidone (motilium) , to help you with this problem.

Iron Levels

Q:   I suffer from low iron levels some years after my oesophagectomy.   Is this unusual?

A:   Iron is a mineral found in every body cell.  It is needed to make haemoglobin, which takes oxygen in the blood to all parts of the body.   Iron also plays a vital role in many metabolic reactions.   Low iron levels can cause anaemia (low levels of haemoglobin in the blood).  the most common symptoms of anaemia are lack of energy, shortness of breath, headache and dizziness.

Some people suffer particularly from low iron levels if all or part of their stomach has been removed.   It often depends on how much of the stomach has been removed as to how much Vitamin B12 can be absorbed into the body and this in turn affects the risk of developing anaemia. Some patients report that they are told that their stomach can no longer absorb Vitamin B12 regardless of how much iron-enriched food they eat as it slips through so quickly.   Iron, folic acid and B12 are all necessary for the production of red blood cells.  Vitamin C in the diet helps to absorb the iron from food, especially if the iron is of a non-haemotological source. Patients who have had their stomachs totally removed will often be put on to Vitamin B 12 injections from their GP;  in oesophagectomy cases or where only part of the stomach is removed, this may not be necessary.   Some patients have regular blood tests to check their ferritin levels.   Some take 200mg ferrous sulphate tablets, some a Vitamin B complex with iron, some take Spatone (an iron supplement) with orange juice daily, whilst some suffer from mild anaemia, shortness of breath or tiredness because of iron deficiency.   When patients cannot tolerate the normal iron supplements, an iron infusion or blood transfusion may ultimately become appropriate.  So it is definitely worth checking with your doctor.

Increasing iron in your diet (reproduced by permission from the Department of Nutrition & Dietetics, St Mary's hospital, Paddington):

Haem iron, found in animal sources, is more easily absorbed than non haem ( from vegetables)

You can improve the absorption of non-haem iron by consuming heam iron in the same meal.   Vitamin C helps iron absorption so taking food high in vitamin C will help  an iron supplement to be absorbed.

Back to top