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Living with a tracheostomy

A tracheostomy is a surgical procedure to create an opening (stoma) through the neck into the trachea (windpipe) to help a person breathe. A tube is placed through the stoma to create a new path for air to reach the lungs.

Doctors may perform a tracheostomy if the upper airway is narrowed or blocked or as part of surgery to remove the larynx (voice box). Surgery to remove the larynx is called a laryngectomy.

  • If you have a partial laryngectomy, the stoma is usually temporary. After you’ve recovered, the doctor removes the tube, the stoma heals closed and you will be able to breathe and talk normally.
  • If you have a total laryngectomy, the stoma is permanent. You will breathe through the stoma and will need to learn to speak in a new way.

Living with a tracheostomy requires some changes to your life. Most people adjust well and lead normal lives after they have had some time to get used to the changes.

Stoma tubes

Different types of tubes may be placed into the stoma, depending on whether the stoma is temporary or permanent. A tracheostomy tube is used for a temporary stoma. A laryngectomy tube is used for a permanent stoma. Most tubes are plastic and disposable, but they can be used for a few weeks or months before they have to be thrown away. It’s very important to clean and change the tubes frequently to prevent infections.

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Protecting the stoma

When you breathe, the air is normally cleaned, warmed and moistened as it passes through the nose and mouth. With a stoma, the air goes directly into the trachea without being moistened. The dry air can thicken mucus that is in the lungs and trachea, which can make it difficult to breathe. Water, dust, smoke and other particles in the air can enter the stoma, making a person cough or choke. If the stoma isn’t covered, mucus is coughed out of the stoma directly into the air.

You can try the following to protect the stoma and avoid these problems.

  • Keep properly hydrated by drinking at least 2 litres of water each day. Being properly hydrated helps keep the mucus thin.
  • Spray a sterile salt solution into the stoma, as instructed by the doctor or stoma nurse.
  • Use humidifiers, especially during the winter when indoor air can become dry from central heating.
  • Wear a cover over the stoma. A stoma bib is a foam covering for the stoma that a person sprays with water. Heat and moisture exchangers (HMEs) are filters that can be placed over the stoma.

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Routine care of the stoma

Daily stoma care is needed to keep the stoma clean. Before leaving the hospital, you will be taught how to:

  • remove, clean and replace the tube
  • care for the skin around the stoma
    • Skin needs to be kept clean and free of crusting from the stoma mucus.
  • use a suction tube to remove mucus, if necessary
    • This may be needed if you get a cold.

The healthcare team will tell you how often stoma care should be done.

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Bathing and showering

A person with a stoma can still bathe and shower as before, as long as the stoma is covered so that water does not get into the opening. You can buy special shower shields for this purpose.

For men, using an electric razor will help you avoid cutting yourself while shaving if your neck is numb after a total laryngectomy and neck dissection.

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Changes to smell and taste

After a total laryngectomy, the ability to smell changes because air no longer passes through the nose. For a few weeks after a total laryngectomy, your nose may be sore and runny as the nose tissues adjust to the lack of air flow. This is normal and will improve over time.

A method called “polite yawning” may help improve smell. It is basically yawning with the mouth closed. Air is drawn into the nose by keeping the mouth closed and covering the stoma. The air passing through the nose allows you to smell.

Taste will also be affected because it is closely tied to smell. You can try to improve taste by:

  • adding more spices and herbs to foods while cooking
  • choosing stronger-tasting forms of foods such as cheese or vegetables
  • marinating foods, such as meats and vegetables, in strongly flavoured marinades

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Swimming and other water sports

You will need special equipment and instruction to go swimming with a stoma. The healthcare team may be able to provide more information on equipment available. Other water sports, such as diving or water-skiing, are not recommended because of the danger of water entering the stoma.

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Body image

Laryngeal surgery may affect how you feel about your body and can cause a major change in body image. It is common to have concerns, fears and anxiety about appearance and altered body function. Some people even have trouble looking at their stoma at first. Talking about these fears and feelings and realizing that it will take time to adjust can help you become more comfortable.

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Work

After recovering from surgery, most people with stomas can return to work with no problems. The only exception may be for people who have jobs that involve heavy lifting. Heavy lifting requires a person to hold their breath, and people with a stoma cannot do this. Some people may need to make adjustments to their work situation.

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Emergency identification

If you’ve had a total laryngectomy, you should always carry identification that explains your medical condition. This can be a wallet card or jewellery, such as a necklace or bracelet that will alert emergency workers to the special breathing needs of someone with a stoma.

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