Having and looking after a gastrostomy tube

Contact dietitian: …………………………………………………

Tel No: 01223 216655

Nutrition nurse specialists

Tel No: 01223 216037

Why has artificial feeding support been recommended?

You have been given this leaflet after visiting our head and neck or thyroid oncology clinic, where we have recommended a gastrostomy tube as part of your treatment.

The treatment you are about to undergo may make it difficult for you to take food and drink by mouth. So that you can continue to take in the nutrition you need to get healthy, a soft feeding tube will be inserted directly into your stomach until normal feeding is again possible.

We understand you may have many questions about what this means. This leaflet will provide answers to some patients' more common questions. Although it will provide you with some of the information that applies to your individual care, it is important to remember that every case is different.

This information is not exhaustive and does not replace medical advice. The head and neck oncology team, along with the nutrition nurse specialists, will discuss with you any treatment you require. If you have any further questions, please contact a member of the team using the contact numbers listed in the ‘head and neck support team’ leaflet (PIN4013).

At Addenbrooke's you will have either receive a Pexact or PEG tube.

Why do I need a gastrostomy tube?

Artificial feeding support is necessary when your current food intake is too low. This may be due to the cancer itself, or the treatment for your cancer.

This treatment and the resulting side effects may mean you are unable to take enough food and/or drink by mouth to meet your nutritional requirements. A gastrostomy tube will help as food and drink can be delivered directly into your stomach without the need to swallow. The tube will normally be placed before you start any treatment so you become familiar with it before using it.

Can I still eat and drink?

Unless advised otherwise, you will be encouraged to eat and drink as much as possible during your treatment. However, this may become more difficult due to side effects, which your doctor will discuss with you. Your speech and language therapist and dietitian will advise and support you throughout your treatment. Please contact them if you have any concerns or questions.

How is a gastrostomy tube inserted?

This procedure is performed in endoscopy using a flexible viewing tube after you have been sedated and with a local anaesthetic so you may be dimly aware of what is going on. The sedation will help keep you calm and comfortable throughout the procedure. Local anaesthetic is used to numb the skin where the tube comes out of the stomach.

An endoscope (a thin, soft flexible viewing tube) is passed through the mouth and along the gullet (the food pipe) into the stomach. This allows the correct site on the tummy to be pinpointed before the tube is inserted. The whole procedure takes between 15 and 30 minutes.

What is a Pexact tube?

A Pexact is a soft balloon retained feeding tube placed through your skin into your stomach to allow liquid feed, water and sometimes liquid medications to enter directly. This tube is held in place by a balloon filled with sterile water. It is important that the water in the balloon is changed weekly.

PEXACT tubes: When the correct point is found in the stomach, two stitches are inserted to bring the stomach up against the abdominal wall for the tube to be inserted from the outside. It is held in place with the balloon of water. The stitches will remain in place until the first tube change is carried out usually four to six weeks after insertion.

What is a PEG?

This is another type of soft feeding tube which also allows you to receive liquid food, water and sometimes liquid medicines directly into the stomach, but it is held in place with a plastic disk. This tube must be inserted and rotated every week (this will be explained after insertion).

PEG stands for:

• Percutaneous (through the skin)
• Endoscopic (instrument used to examine the stomach)
• Gastrostomy (opening into the stomach)

PEG tubes: When the correct point is found in the stomach, a wire is inserted which guides the tube into place. The tube is brought down the gullet connected to the wire and pulled through to the surface. It is held in place by the plastic bumper.

What are the risks of the procedure?

Having a gastrostomy tube placed does entail some risks. As with any treatment the risks have to be weighed up against the benefits.

• There are some risks associated with the sedatives, which could affect your breathing and could lead to pneumonia. Using light sedation can reduce these risks, but would make the procedure more unpleasant.
• While inserting the tube, there is a small risk of internal bleeding or puncturing an organ.
• After the procedure there is a small risk of infection within the abdomen (peritonitis), which is rare but can be serious.

However, you will be closely monitored during the procedure and all patients are thoroughly assessed and evaluated before to considering inserting a gastrostomy tube.

There will be some discomfort after a gastrostomy insertion. However, if any of the following occur after the procedure:

• leaks of fluid around the tube
• pain on feeding or flushing your tube
• new bleeding

Stop feed or medicine delivery through the tube immediately and seek medical advice

Monday-Friday 08:30 to 16:00 - nutrition nurse specialists - 01223 216037

Out of hours – Please contact your GP. If you cannot wait to be seen by your GP, contact your local hospital’s emergency department.

What problems might I encounter after placement of a gastrostomy tube?

Tube problems

• Pain: The site where the tube enters the stomach can be painful for a few days after the procedure. This is often worse for patients who are young and able to walk. You will be given painkillers if this is the case, and the pain usually goes completely after a few days.
• Blockage of the tube: This can usually be unblocked easily but is prevented by flushing with water.
• Infection at the insertion site: This can be of concern but is rarely serious, and is usually treated easily with antibiotics.
• Over granulation at the gastrostomy site: This is a small red raised area which can weep due to a mild infection and is easily treated with a dressing or ointments.
• Leakage around the gastrostomy site: Occasionally feed may leak around the tube – this can be because the tube is too loose and can normally be rectified by tightening the retention plate. In some cases, the tube may need to be replaced, or repositioned entirely at a different site.
• Displacement: It is unusual for the tube to become dislodged. However, this can happen with very confused or disorientated patients and lead to damage in the abdomen with the risk of infection.

Feed related problems

Diarrhoea or constipation. Your dietitian will advise on how to deal with these issues if they arise.

How long will I need to stay in hospital to have a gastrostomy tube placed?

You normally come into hospital the day of the procedure and stay for one night in all. While you are here, we will teach you or your family how to look after the feeding tube if you have not had pre-insertion training.

What do I do if I have problems?

You will be trained in all the necessary techniques to look after the tube and what to do if you do have problems. Your dietitian or nutrition team will provide regular follow up and the company delivering your feed will have a nurse help-line; details will be provided before you go home.

How is the feed given?

When feed is required your dietitian will discuss the options available with you so that you can decide which is best for you. The nutrition nurse specialists may also be involved in this discussion to ensure you receive the correct equipment and training.

Feed and extra water may be given by syringe (bolus), or using a pump during the day or overnight depending on your preference. All equipment and feed needed will be delivered direct to you at no cost by your local feeding company.

Feeding is usually managed by the patient or relative. If this is not possible, special arrangements will need to be made before discharge from hospital. If you have concerns about how you will manage please let us know.

How long will I need the tube for?

If you have a Pexact tube, the original will need to be replaced after approximately six weeks, at which time your stitches will be removed. This needs to be done according to the manufacturer’s instructions. An appointment for this will be arranged for you here at Addenbrooke's. Your replacement tube will last up to three months. If this needs replacing, it can be changed at home by your local nutrition or feeding company nurse.

If you have a PEG tube which is well cared for, it can last for up to five years. One way of increasing the life of your tube is to leave the clamp undone when the end connector is in place. This prevents the clamp squashing the tube. You can also change the place the clamp sits along the tube to avoid squashing the same part of the tube each time.

After your treatment has finished, your dietitian and speech and language therapist will work with you to get you back to normal eating and drinking as soon as possible. Once you can eat and drink well enough without your tube for a minimum of one month your doctor will, during clinic appointment, discuss removing it. If the doctor is happy for your tube to be removed this will be done in Addenbrooke's or at home – your dietitian will advise you which.