Life with a breathing stoma
This page tells you about life with a tracheostomy, or laryngectomy stoma. You can go to information about
- A quick guide to what's on this page
- Before you leave hospital
- Keeping your airway moist
- Skin care around your stoma
- Suctioning your stoma
- Cleaning and changing your tube
- Coping with a runny nose or a cold
Before you leave hospital
Your physiotherapist and nurses will teach you how to look after your stoma and breathing tubes. It helps to practice as much as you can. You will then know what to do when you get home. It helps if someone you live with or see regularly also learns what you have to do.
Looking after the stoma and tubes
Your stoma nurse will arrange to visit you at home to check on how you are getting on. You will need to keep the air that you breathe in moist. It helps to drink plenty of fluids, and spray sterile salt solution (saline) into the tube, or use humidifiers in your home. Some people use filtering and moistening systems. It is a good idea to cover your stoma to keep out dust, pollen and other objects. You will need to keep the stoma, tubes and speech valves clean.
Your sense of smell and taste
When you have a laryngectomy, your sense of smell will not be as good as it used to be. You can learn a technique called the polite yawn to improve it. Learning this technique can help improve your taste too. You can also add more flavouring (using spices or herbs for example) to your food.
Showering, shaving and swimming
You will be able to shower and have a bath, but you need to be careful not get water into your stoma. Shower covers are available. Your neck may be numb for a few months after your surgery. To avoid cutting yourself while shaving, it may be best to use an electric razor. If you want to swim, you will need to have special equipment and training. Other water sports may not be possible.
Effects on daily life
When you have a stoma it is difficult for you to lift heavy things. It is important to avoid constipation because you can't strain when you go to the toilet. Stopping smoking will improve your general health and reduce your chance of getting another cancer in the head and neck area.
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Before you leave hospital, it is important that you feel confident about how to look after your stoma. Your physiotherapist and nurses will teach you about this before you go home. But once you are at home, things can seem very different and you may feel a bit lost outside the safety of the hospital.
Ask as many questions as you need to while you are still in hospital and practise looking after the stoma and tubes as much as you can. It will help if someone you live with or see regularly learns what you have to do too. Even if you manage very well in hospital, don't feel bad if you don't feel quite as confident when you get home. You've had a lot of information to take in. The nurses will understand if you need to call the ward for advice. Your stoma nurse will arrange to visit you at home to check on how you are getting on.
The air we breathe is normally kept warm and moist (humidified) by the nose and mouth. But now air you breathe in goes directly into your airway through a laryngectomy tube and the moisture must be replaced. If it is not, the mucus your airways naturally produce will become thick. This can make it difficult for you to breathe. If your mucus becomes so thick that you cannot cough, this can be very serious as thick mucus could potentially block your stoma. Thick mucus can also make you more likely to get chest infections. You can help to avoid these problems if you
- Drink at least 2 litres of fluids each day to help keep the mucus in your airways thin
- Spray sterile salt solution (saline) directly into your tube to keep it clean and moist. You will be shown how and when to do this by your nurse
- Use humidifiers in your home
- Use a filtering system
Some people use filtering and moistening systems. Your stoma nurse can tell you about these. They range from
- A piece of foam that you wear over your stoma and spray with water
- More complex filtering and moistening systems that fit over your stoma to clean and moisten the air you breathe
The piece of foam is the simplest and most convenient method of moistening the air you breathe. There are custom made laryngectomy foams with ties that go round your neck. These are sometimes called stoma bibs. They come in a variety of styles and cover your stoma.
It is a good idea to cover your stoma. It helps to keep out dust, pollen and other objects. If you cover your stoma, you will have a cleaner stoma with less crusting and probably fewer infections.
Some manufacturers call the filtering systems HMEs – heat and moisture exchangers. Look in useful organisations for suppliers of this type of equipment.
Very few people need to use humidifiers at home. But if you do, you will need a large one in your main living area to use during the day. And a small one to use by your bed at night. You have to clean humidifiers weekly to stop bacteria growing in them. Some people use pans of water on radiators, or on the cooker on low heat to help keep the air moist.
Remember – electricity and water do not mix! Never balance a bowl or pan of water on an electric heater. If you put a pan of water on the hob, it is a good idea to put a timer on to remind you to check it hasn't boiled dry.
You need to clean your stoma often while it is healing. When you are in hospital, your nurse will help you do this. The liquid recommended for cleaning stomas and tubes varies between hospitals and specialists. Your stoma nurse or ENT surgeon may suggest sterile water, sterile salt solution or a mild antiseptic. Your stoma may need cleaning four or five times a day until it has completely healed. Keeping your stoma clean can help to stop scar tissue forming. Scar tissue can make the stoma narrower.
When the skin has healed, you can use soap and water to clean round the stoma. Remember to always dry your skin thoroughly. Your doctor may give you an antibiotic cream to put on the skin around your stoma. But not everyone needs this.
All internal speech valves need regular cleaning. Your speech valve may come with specially designed brushes or sprays to help you clean it. Because the valve connects your windpipe with your food pipe, bits of food can lodge around it. If you don't get rid of these, they can block the valve or cause an infection.
You have to clean external valves once a day. Your nurses will show you how to take out the valve, clean it and put it back before you leave hospital. Your stoma nurse may also help you with this at home to start with. As your confidence grows, you'll find you can manage this yourself.
While you are recovering from your surgery, your nurse will help you to clear out your airways with gentle suction through a soft plastic tube (catheter). In time, you should be able to clear your airways yourself, just by coughing.
If you have a laryngectomy, you might sometimes need suction at home, particularly if you have a cold. It is important that you and someone close to you, preferably someone you live with, learn how to do this, especially if you are not able to cough up your own mucus. Your nurse will teach you and your close family how to do this before you go home.
One man told us the following about having to go into hospital for an operation a few years after having his laryngectomy
"I found it helped to make it clear to hospital staff before my operation that the oxygen mask would have to be attached to my stoma. And that it would help to have a suction machine close to my bed for mucus problems"
Many people learn to clean and change their own tubes at home. You will not be expected to do this until you feel confident and have practised with your nurses before leaving hospital.
If you wear a tube, you may need to clean it every day or only once a week. If you have a double cannula tube, with an inner tube, you should clean it between 3 and 5 times a day. Some people clean their tubes more often. When you are not cleaning it, your inner tube should always be in place in the outer tube in your stoma.
For changing and cleaning your tube at home you may need
- Brushes to clean the tube
- Swabs to clean around your stoma
- Ties to secure the tubes
- A mirror so you can see what you are doing
Exactly what you have to do varies, depending on the type of tube you have. Your nurse will show you how to do this before you leave hospital and you will be able to practise on the ward, with a nurse watching you and giving you support. At first, taking out your tube may feel terrifying. But your stoma will heal so that it is permanently open. Once you are confident enough not to panic, you will find it very simple to do.
Remember – you can always contact your stoma nurse, GP or the hospital if you are worried about caring for your stoma at home. They will be happy to advise you.
It is quite common to have a runny nose for the first few weeks after your laryngectomy. The tissues lining your nose have to get used to the lack of air passing over them. It gradually stops. Don't take allergy tablets (antihistamines) as they are likely to make things worse in the long run.
If you get a cold, your doctor may say you have tracheitis. This is more serious for a laryngectomy patient because thick mucus could potentially block your stoma. It is more likely to develop into pneumonia than in people who do not have a breathing stoma. So see your doctor straight away.
If you get a cold, you have to cough up any mucus you have through the stoma. This may be very hard to get used to at first. But, with time it will become second nature for you to put your tissue or handkerchief up to your neck and not your nose. You will no longer be able to blow or sniff through your nose.
Remember – if you get a bacterial infection, you will need to take antibiotics. See your doctor straight away if you have
- An increase in phlegm (pronounced flem)
- Thick phlegm
- A change in the colour of your phlegm (brown or green)
- A cough that doesn't go away
- Bleeding from your stoma
When you have a laryngectomy, your sense of smell will not be as good as it used to be. To smell things, you need air to flow through your nose. As your mouth and nose are now cut off from your breathing, this no longer happens automatically.
Your sense of smell may improve in the months following your operation. You can learn a technique to improve it. It is called the polite yawn. To do this you yawn with your mouth closed. This draws air into your nose, so that you can smell. Your speech therapist is the best person to help you with this.
Learning this technique can help improve your taste too. Taste depends partly on smell. So if you can't smell, you may find your food doesn't taste quite as much as it did. Another approach is to add more flavouring (using spices or herbs for example) to your food, to help your taste buds along. There is more about this in the section on diet and cancer of the larynx.
You will still be able to shower and have a bath. But you must be careful not to get water into your stoma. Various types of shower covers are available. Ask your clinical nurse specialist or physiotherapist about these. Or look in useful organisations for stockists. Try not to get too concerned about showering – if you do breathe in a little water, it will make you cough a lot, but you will be able to cough it up straight away.
If you are a clean shaven man, remember that your neck may be numb for a few months after your surgery. To avoid cutting yourself, it may be best to use an electric razor.
If you want to swim, you will need to use special equipment and training so that you don't get water in your stoma. You will need the help of the staff of your local swimming pool. They must have training in helping someone with breathing difficulties who has a tracheostomy or laryngectomy. For more information contact the National Association of Laryngectomee Clubs (NALC).
Other water sports may not be possible. This may be difficult to accept if you were a keen diver, for example. Other exercise may not seem as much fun. But there are plenty of things you can still do. Try to find an alternative exercise to keep yourself fit.
It will now be difficult for you to lift heavy things. This is because when you normally lift something, you breathe in and hold your breath. This gives you extra strength. After your laryngectomy operation you will not be able to hold your breath.
As you can't hold your breath, it will be difficult for you to strain when you go to the toilet to pass a bowel movement. It will make life easier if you make sure you don't get constipated. You should
- Drink plenty of liquids
- Eat fruit and vegetables and other fibre containing foods
- Keep active
As well as eating plenty of fibre it is important to take plenty of exercise and drink plenty of fluids. If you do get constipated, ask your GP for help early on. You can have suppositories or a micro enema (a very small enema) to start your bowels moving. If you find you are getting constipated a lot, talk to your GP about taking a regular laxative or stool softener.
If you smoked before your laryngectomy operation, it is important to try to give up (before your surgery, if possible). This is not always easy, especially if you have smoked for many years. But if you carry on smoking, you are at risk of another head and neck cancer or lung cancer. There is information and help with giving up smoking on our News and Resources website.
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