Gastroenterology - Life after Oesophagectomy

This leaflet has three aims:

•    To help you work towards a full recovery after having major surgery
•    To help you overcome any worries you may have about returning home
•    To help you and your family to be better informed about the care available to you in the community

Will I need to rest when I go home?

You have had a major operation that has resulted in a long stay in hospital, and you may feel that life can never be the same again. It can, with slight changes it can be a very good life.

Recovery from this type of surgery is not fast and it may be several months before you return to your normal activities of living.

Initially you may feel very tired, exhausted at times, and will need plenty of rest and may need a nap during the day when you first go home. This will not affect your sleep at night but will make your morning and afternoons a little easier

The aim for you now must be to learn to live with the changes in your system so that they affect your quality of life a little as possible.

What do I do with the feeding tube (jejunostomy)?

It is common to go home with the feeding tube still in place. It is likely that the dietician and medical staff have suggested you continue on feed at home for a short period. This will likely be an overnight feed. You and your family will be trained on how to use this tube and feed before you leave hospital.
 
If you are not having feed at home, you should continue to flush the tube twice a day using cooled boiled water

You will be reviewed closely in the clinic following your discharge. Once the team decide you no longer need the feed and tube, it will be removed in clinic.

Will I be able to swallow normally?

Yes, you should have no trouble in swallowing normal food after the operation.

If you experience difficulty with swallowing when you are at home, you should contact the Upper GI Specialist Nurse or your GP for advice.

What will I be able to eat after the operation?

You should be able to eat a soft diet by the time you leave hospital. You will remain on a soft diet for 4-6 weeks following your discharge. After this you should be able to eat a relatively normal diet.

Will I have problems eating after the operation?

• You may find you need to eat smaller amounts more frequently i.e little and often. You should aim for small meals roughly palm sized amounts
• Chew food well and relax after meals
• Sit upright when eating
• Initially it is advisable to eat slowly and have small portions until you know your own capacity
• If you do eat too much at one sitting you may feel uncomfortable, this will ease with resting, usually within 30 minutes
• It is advisable not to have a drink with your meal as the fluid may fill you up and make you feel bloated. You should take fluids approximately one hour before or one hour after eating
• If you experience continued bloating and nausea after eating it may be that your stomach is not emptying as well as it did before your operation. If this occurs, you should contact the specialist nurse or your GP who can give you advice and prescribe medication to help your symptoms

Will my sense of taste be affected?

Initially your sense of taste may be affected. Foods may seem to lack flavour or taste differently from before. This should settle down fairly quickly and your taste should return to normal.

What should I do if I have problems with my appetite?

• Eat small portions of food frequently, known as little and often. You should aim for small meals roughly palm sized amounts. You should aim to eat every 2 hours
• Try to have high calorie foods
• Stick to foods you like
• Try to have nutritious drinks such as milk shakes, milky coffee
• Your doctor may be able to prescribe you supplement drinks under the supervision of the dietician. There are a variety of these supplements available, and you should choose the one which suits you best
• If your lack of appetite persists and you are losing weight, contact the specialist nurse or your GP

How can I gain weight?

• The hospital dietician will give you advice before you go home
• It will be quite normal for you to lose a little weight when you first go home
• Try to have regular snacks in-between meals such as biscuits, cakes, chocolate, crisps, milky drinks, yoghurts
• Use butter/margarine and avoid using low calorie spreads
• Try to use at least one pint of full cream milk daily
• Add extra milk, butter, cream, cheese to foods such as mashed potatoes, soups and vegetables and extra cream, sugar, jam to foods such as puddings, breakfast cereals
• Use supplement drinks e.g. build up or complan

Will I be able to drink alcohol?

You can drink alcohol as long as it does not interfere with any of your medications.

When will I be able to start exercising?

You should be able to start light exercise as soon as you get home. Short walks or a little light housework should be possible within a few weeks. Progress maybe frustratingly slow and you should not push yourself to do too much in the early stages. As time progresses and you feel you have more energy increase the exercise as you feel able.

Light exercise will stimulate your appetite and your breathing.

It is also beneficial to carry on with the breathing exercises you were taught by the physio in hospital. This may help prevent chest problems once you are discharged.

Will I have pain when I go home?

Most patients will have little or no pain a few weeks after the operation. If you do have any pain it will be assessed before you leave hospital and appropriate painkillers will be prescribed to take home with you.

You may experience some discomfort in your right chest where the scar from your operation is when you carry out certain exercise manoeuvres. You may also have limited mobility of your right arm initially after the operation but with regular exercise this should return.

Will my voice change after the operation?

There is a possibility that you may have some hoarseness of your voice after the operation. This may occur due to injury of the vocal cords.

Some other possible problems

Coughing

After surgery you may have a dry cough, perhaps when talking. It will hopefully settle in time. You can speak to your Specialist Nurse for further advice on how to manage this cough.

Food sticking

In the early months after surgery scar tissue at the new join of the oesophagus may cause you to feel like food is becoming stuck. This can be worrying for you but can be alleviated fairly easily. You will likely need to have your new join stretched, this will be performed via a camera test (endoscopy), and it can be performed as an outpatient. It is known as a dilatation.

Sickness

Sometimes food can remain in the stomach too long causing you to feel sick and bloated. This problem can often be relieved by taking a medicine such as metoclopramide or domperidone. You will need to take this medicine 3 times per day, taking half an hour prior to each main meal. This medicine will hopefully improve the function of your stomach allowing it to empty a little easier.

Reflux

It occurs most commonly at night or early morning. If you suffer from reflux when sleeping or resting it may help to lie on your left side and avoid the right. You may also find it helps to sleep propped up, you can do this by using extra pillows. You may experience some problems when bending or stooping forward. This can be avoided by kneeling or squatting. Medication can also be prescribed to control your symptoms.

Dumping Syndrome

Dumping occurs when the sugar content of the food you have eaten passes rapidly through the system. It can cause you to experience dizziness, feeling faint, feeling hot, sickness, abdominal pain and/or diarrhoea. The Nurse specialist and dietician can talk to you in more detail about this if needed.

Driving

You can drive when you feel you can safely do an emergency stop without hurting yourself or damaging your wounds. It is wise to inform your motor insurance company that you have undergone major surgery before you start driving again.

Returning to work

The timing of your return to work depends on many factors such as type of work you do and your current health and fitness.

Regardless it may be many months before you do get back to work.

What should I do about my wound?

If you have any dressings that need to be changed or stitches that need to be removed, a member of the healthcare team will arrange for a district nurse to call at your home.

You can have a bath or shower. Avoid putting any creams or powders directly on the wound until it has healed well.
If the wound becomes sore, red or begins to leak, let you’re GP or district nurse know.

You can expect some soreness around the wound for several weeks after the operation. Keep taking painkillers regularly to ease this discomfort. You may experience some redness around the feeding tube (jejunostomy) site due to the stitches, we encourage you to bathe this daily to ensure it stays as healthy and clean as possible.

Will I need further treatment?

Once you have had the operation you may need a course of chemotherapy.

You will also be prescribed a 28-day course of blood thinning injections; these are given to prevent you from getting a blood clot. These are given from day 1 of your surgery; you will complete the remainder of the 28-day course at home. You will be shown how to administer these yourself whilst in hospital.

Will I be followed up at the hospital after the operation?

Yes, you will be seen in the outpatient department approximately 2 weeks after discharge and then at regular intervals form then on.

Will I have any support when I go home?

Support will be available to you on discharge if needed. You will be assessed by individual members of the team before you leave hospital to see if you need help and support when you go home.

The team includes:

• Medical staff
• Specialist Nurses
• Ward nursing staff
• Dietitians
• Physiotherapist

If needed, then a social worker and occupational therapist can be involved.

Any care you need will be provided an arranged before you leave hospital.

Psychological effects after surgery

Now that you are recovering you may find that you have an emotional reaction to the events you have been through recently. The specialist nursing team and your GP can help. You may find it helpful to speak to other patients who have been through something similar, details of the patients support group are below.

Is there a support group for patients who have had oesophagectomy?

Yes, it is known as the Oesophageal Patients Association. They may be contacted at Oesophageal Patients Association 16 Whitfield Crescent, Solihull, West Midlands, B91 3NU Tel 0121 704 9860.

Salford Upper GI cancer service has an established support group. The group is an open forum giving patients space and time to explore and share individual issues with other sin a similar situation. The group also offers support to relatives and carers.

The meetings are divided into two parts, the first hour consists of structured information, education and support programmes and the second hour an open forum offering the opportunity for members to explore and share individual experiences.

The group is facilitated by the Clinical Nurse Specialist who are qualified counsellors and have completed Advanced Communication Skills Training.

Meetings are held in the Mayo Building, Salford Royal Hospital, Stott Lane, Salford, M6 8HD

Contact the Upper GI Nurse Specialists for dates of next meeting.

For further advice or information please contact:

Upper GI Specialist Nurse on 0161 206 5062
Email: uppergi.nursingteam@nca.nhs.uk

Upper GI Surgical Secretaries:
0161 206 5472
0161 206 5744
0161 206 5128
0161 206 0449

Macmillan Cancer Support Centre - 0161 206 1455