Gastrostomy is a medical procedure during which a short, fixed tube is placed into the stomach through the abdominal wall3. This procedure involves an injection of a local anaesthetic, a small incision and, depending on the type of gastrostomy performed, mild sedation.
Once the tube has been positioned into the stomach it is prevented from moving by a widening of the tube internally and a small flange or collar externally. A cap is placed over the external end of the fixed tube. You can tuck the external end of the tube under your clothes when it is not in use. Fluids and liquid foods can be passed through the external opening of the tube. Receiving nutrition this way is called enteral feeding. It is commonly suggested for people who have complex medical conditions or disabilities affecting their ability to swallow.
The fixed tube generally lasts for one to two years and can usually be replaced easily. Changing the tube does not usually require hospital admission.
Motor neurone disease causes the muscles you have control over to weaken, become slow or uncoordinated4. This can include the muscles involved in chewing and swallowing.
When a person has weakness in the muscles involved in chewing and swallowing they may eat and drink less than normal, cough during mealtimes, take a long time to eat or be worried and anxious about eating and drinking. Difficulty eating and drinking can result in weight loss, malnutrition, dehydration, aspiration pneumonia and a loss of enjoyment of life.
Gastrostomy enables you to receive nutrition, fluids and medication through a small fixed tube that is fitted directly into your stomach, bypassing your mouth and throat. If you have lost weight or have become dehydrated through inadequate nutrition, enteral feeding via gastrostomy may increase or maintain your weight, improve hydration and help to reduce tiredness and hunger. Some people with motor neurone disease can continue to take some foods and fluids by mouth after a gastrostomy.
People with motor neurone disease who have a gastrostomy to achieve adequate nutrition may live longer1,2. Your motor neurone disease will, however, continue to progress with or without a gastrostomy.
In Australia, two common methods are used to place the fixed feeding tube3,5. Both usually involve mild sedation and a hospital stay of several days. Talk to your doctor about the right type of gastrostomy for you.
PEG takes about 30 minutes to complete.
1. An endoscope, a flexible instrument used to examine the inside of the stomach, is passed via the mouth into the stomach and after the area has been anaesthetised, a small incision is made through the abdominal wall.
2. A guidewire is inserted into the incision from the outside.
3. The guidewire is brought up through the endoscope into the stomach with the feeding tube attached.
RIG takes about 60 minutes to complete.
1. A fine, soft tube is inserted via the nose into the stomach. A liquid which shows up on an X-ray is passed down the tube into the stomach.
2. A local anaesthetic is injected into the abdominal skin and a small incision is made. The feeding tube is then inserted through the incision using X-ray guidance.
3. Several stitches are used to close the incision.
If you have a very weak exhalation caused by respiratory muscle weakness you may be more at risk of complications during and after the gastrostomy procedure6. Therefore, you may need to have the gastrostomy performed before you really need one for nutritional reasons, but before your respiratory function declines.
Sometimes, people with motor neurone disease who have a gastrostomy need specialised respiratory management during the procedure. Having your gastrostomy at a hospital that is very familiar with the particular health needs of people with motor neurone disease may reduce your risk of complications7,8.
Complications of gastrostomy for people with motor neurone disease can occur during, or in the weeks following the procedure9. It is important to talk these through with your medical team along with the impacts on quality of life prior to having the procedure in order to support informed decision-making for people with MND.
When making the decision to have a gastrostomy, some thought needs to be given to the changes required once the tube is in place, such as considerations around hygiene, skin care and using the tube for nutrition, hydration and medication when away from home. Your views on enteral feeding may change over time. You may choose to have a gastrostomy, then later choose to cease enteral feeding. Discuss your preferences at regular intervals with your healthcare team1.
To get advice about gastrostomy, talk with your general practitioner, neurologist, speech pathologist, dietitian, MND clinic, service or state Association.
The online MND decision tool can also help you learn more about your options.