now - in association with

 The Oesophageal Patients' Association

Former patients helping new patients

Helpline 0121 704 9860
Tips we have found Useful - and Frequently Asked Questions

NB. We are patients rather than health care professionals but these tips have been found to be useful by many oesophageal patients, in the UK and elsewhere. However, oesophageal patients are all different and what works for one person may not work for another.   Taking these facts into consideration, if you have any doubts, we advise checking with your doctor before trying any of our tips.

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!

Reflux   Abdominal Cramps    Dizzy Spells     Food Ideas      Stents      Milk   Top

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

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.
  • It is also possible to buy a wedge shaped pillow. The most effective have 'egg box' construction.   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.

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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

Food Ideas

There are recipes and ideas in:


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.

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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. 

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

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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 ans 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'

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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.

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.

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Contact us to submit further questions