For Patients & Parents

Whether tube feeding has just been recommended for you or your loved one or you’ve been living with tube feeding at home for some time, you’re likely to have tube feeding questions along the way. We’ve compiled a library of tube feeding frequently asked questions, with answers provided by healthcare professionals. For a more refined search, try clicking on the topics you’re most interested in.

How will tube feeding help me or the person I’m caring for?

The reason that you (or your loved one) have been recommended to start tube feeding is because you’re not receiving the right amount of nutrition by oral feeding alone, or you’re unable to swallow or tolerate food by mouth. Receiving all the nutrients you need through tube feeding may support your recovery. See also: Why tube feeding?

Is tube feeding safe?

Tube feeding has come a long way since its humble beginning. Advances in the sciences of food, food technology, nutrition and medicine have established tube feeding as a standard measure for restoring or preserving nutrition health in chronically or critically ill patients1. Occasionally, some people will experience challenges when adjusting to tube feeding. While it’s important to be aware of potential tube feeding problems, it’s important to remember that these problems can largely be anticipated and prevented2.

References
1. Chernoff R. An overview of tube feeding: from ancient times to the future. Nutrition Clin Pract 2006;21:408–410.
2. Payne-James J (2001). Chapter 19: Complications of enteral nutrition. In: Payne-James J (ed). Artificial Nutrition Support in Clinical Practice, 2nd edition. Cambridge: Cambridge University Press, pp. 335-345.

See also: How safe is tube feeding?

How long can I survive being tube fed? Does it put more or less pressure on my organs?

Tube feeding can be used as a sole source of nutrition for as long as it’s needed. It provides a balanced and healthy diet and contains all the nutrients you or your loved one need, day after day.

How long will I need to be tube fed?

Some people need tube feeding for short periods of time, while others may need them long term. Your healthcare professional will discuss the expected length of time you or your loved one will require a feeding tube. Progress will be reviewed regularly by the consultant and dietitian.

Does tube feeding mean I have to stay in hospital?

Tube feeding at home is a life-changing experience and will affect many aspects of your life, but it is manageable and will eventually fit into your everyday routine and life. There are many different organisations and groups to help support you in this. Find out more about how will I manage?

What’s the best position during tube feeding (laying, sitting, upright)?

The ideal position for you or your loved one when tube feeding is sitting up. However, if this isn’t possible, prop yourself or your loved one up on at least two pillows to lie at an angle of 45° or greater. You should remain in this position during the feed and for up to 30-60 minutes after tube feeding. It’s not safe to feed while lying flat.

Can I take a break during feeding?

You can take a break from feeding, so long as you take the following steps.

For a short break (less than an hour), such as if you need to use the toilet, may need to stop the feed. You should avoid disconnect your tube from the giving set unless necessary).If you need to, disconnect the tube from the giving set, and replace the end cap on the giving set. You will need to flush your feeding tube before you start feeding again.

For a longer break (more than one hour), you should disconnect your tube from the giving set and replace the end cap on the giving set, Then put the feed into the fridge, leaving the giving set attached to the feed. When you take the feed out of the fridge, leave the feed for an hour to give it time to get back to room temperature before you start feeding again. You will need to flush your feeding tube before you start feeding again.

What flavour is the feed?

Since tube feed goes directly into the stomach or intestine, most tube feeds do not have flavour. Sometimes sip feed in smaller bottles is used for bolus feeding, which has flavours like vanilla, strawberry and chocolate.

What temperature should the food be? Can I warm it up?

Tube feed should always be taken at room temperature (20-23 ºC). Cold feed can lead to intolerance problems or diarrhoea. If you warm up the tube feed, (such as with hot water or in a microwave), there’s a risk of ‘cooking’ the formula, which will reduce its nutritional value. Warming up the tube feed can also increase the risk of infections.

What if I want a drink because I feel thirsty? What types of drink are acceptable?

Whether or not you can drink and what kind of drink is acceptable depends on your personal condition or that of your loved one. It you have difficulty swallowing, drinking could pose a risk of choking and with that, infections. Discuss with your healthcare team what is suitable in your situation.

Will I get hungry? Will I feel full and satisfied?

Tube feeding can give the sensation of fullness, the same way you would by eating food. However, when the tube feed is administered continuously in small amounts over the course of a whole day, you may feel less of the sensation of fullness. If your intake is less than the prescribed amount or if you take more time in between the feeds, you can feel hungry. If you feel hungry for a longer period of time, discuss with your healthcare team if the recommended amount of feed is sufficient for you.

What signs should I look for that might mean there’s a problem?

You should get in the habit of checking for these signs of problems every day:

  • Redness at the stoma site: If you see redness which persists or is painful, inform a member of your healthcare team.
  • Oozing from the site: If you notice oozing from your gastrostomy site after it’s been dry, tell your doctor, who may send a swab to a hospital laboratory. You may be advised to apply an antibiotic cream, but do not apply an antibiotic to the site unless advised to do so. Continue cleaning and drying the site thoroughly. You may need to use a dressing to protect the skin and absorb the ooze.
  • Overgrowth of skin around stoma: The skin may overgrow around the stoma and require treatment. This is known as granulation tissue and is a result of the body trying to repair the surgical incision. If this occurs, contact your doctor or a member of your healthcare team.
  • Leakage of stomach contents from around the stoma site: Leakage of gastric contents around the stoma site can cause burning and pain to the surrounding skin. The external fixation device may need to be tightened so the internal bumper is against the stomach wall. You will be shown how to tighten the fixator by a member of your healthcare team before going home.

Find out more about coping with complications.

Can I take extra supplements?

Whether or not you can take extra supplements and what supplements are acceptable depends on your personal condition or that of your loved one. Discuss with your healthcare team what is suitable in your situation.

What should I know before going home with tube feeding?

Before you go home, it’s important to know why tube feeding is the best option for you or your loved one. You also need to know the basics of how to administer tube feeding, how you can order or will receive the feed and accessories, and what kind of support you can expect at home. Make sure you are informed by your healthcare team before leaving hospital. If you feel you are not well informed, ask the right questions to feel more confident. Find out more about finding the right support.

If I’m feeling better, can I stop tube feeding?

The objective of tube feeding is to provide the right amount of energy, protein and nutrients your body needs which may support your recovery. Tube feeding should be continued until you can receive all the nutrients you require by mouth. Therefore always discuss with your healthcare team before you stop tube feeding, or alter anything in your dosage or routine.

What side effects might I have at first? When will I start to feel better?

It can take time to figure out the tube feeding routine that works best for you or your loved one. While making these finer adjustments to your routine, you might experience some side effects. However, there are many ways to manage any side effects you might experience.

  • Upset stomach: If you are nauseous (feeling sick), delay the tube feeding for 1-2 hours. You can also try a smaller amount of feeding or set the pump to a lower rate.
  • Diarrhoea: First make sure that the pump is delivering feed at the correct rate. Your rate should have been given to you as part of your tube feeding plan. Ensure the feeding equipment is clean and your feeding set has been changed every 24 hours. Always deliver the feed at room temperature. Be sure to cover and put in the fridge any opened feed that’s not actually being used through the pump. When ready to use the feed again, remove it from the fridge and allow it to stand at room temperature for 30 minutes before using. After a pack of feed has been open for 24 hours, you should throw it away.
  • Constipation: Ensure you’re taking any extra fluids that were recommended by your dietitian or doctor, and don’t miss flushes. If possible, try to exercise and move around. If this doesn’t resolve the problem, it’s important to let your dietitian know.
  • Wind: If you’re experiencing a lot of wind or back pain after tube feeding, open the cap on the tube and let any excess gas escape through the tube. This is a process called venting. Your healthcare professional may show you how to attach a Enfit syringe or special valve to vent excess gas.

Whether or not you or your loved one will experience side effects, and how long it will take to resolve, will vary from person to person. If the side effects are persistent or you have any doubts about what to do, always contact your dietitian or a member of your healthcare team.

What if my child gets sick - what should I do?

If your child feels nauseated (feels sick), wait one or two hours before feeding and then resume feeding at a slower rate. If they continue to feel sick, start vomiting and/or diarrhoea persists, you’ll need to contact your child’s doctor for further advice.

Some medications, such as antibiotics, can cause diarrhoea. Ask your child’s doctor about any possible side effects from medications they’re taking.

What if the tube comes loose or falls out?

Your tube might become loose or dislodged with coughing, sudden movements or accidental or excessive pulling of the tube. If this happens to take place, stop any feeding. If you have a NG tube and you’ve been shown how to replace it, please do so. Otherwise, you’ll have to go to hospital to have your tube replaced by a healthcare professional. A handy tip: contact the hospital beforehand to avoid waiting in Accident & Emergency.
If you have a PEG, Button or jejunostomy and it is accidentally removed, please put a dressing over the site and go as quickly as possible to the hospital Accident & Emergency Department or get in touch with your emergency contact, as the stoma will begin to close up.

What if the tube gets blocked?

A tube can get blocked because of:

  • Medication that wasn’t grinded enough
  • Inadequate flushing before and after feeds and administering medication
  • Closed tube clamp

If you experience a blocked tube, don’t panic – this is a common problem that can be easily resolved (and easily prevented with precautions). Pull out as much feed as possible from the tube with a syringe. Gently flush the tube with either sterile or cooled boiled water with a Enfit syringe. If it’s still blocked, try flushing with lukewarm water and then try with carbonated water.

Still blocked? Gently squeeze the tube between your fingers along the length of the tube and repeat flushing. If this does not work, get in touch with your nurse or a member of your healthcare team. Read more about coping with complications.

How do I look after the tube?

Proper care of your feeding tube will go a long way in preventing problems. For preventative maintenance for a PEG, follow these steps:

  • Once a day, turn the tube in a complete circle.
  • When the tube has been in place for four weeks, the external fixator device should be opened and the inside cleaned. This must be carried out weekly.
  • A removable Y connector is located at the end of the tube. This may be changed if it breaks or becomes clogged with feed.
  • Vary the position of the clamp on the tube to avoid damage to the tube. Replacement clamps are available from manufacturer or hospital if required.

See also: Long-term Care & Support

Is it normal that the colour of my tube has changed with time?

With good care of your tube, the colour should not change. It’s recommend that the giving set be changed every 24 hours. This is to ensure that good hygiene is maintained and to avoid any potential bacterial contamination. Changing the set also ensures the accuracy of the pump nutrition delivery with a minimal deviation of 5%.

Can I put my own food down the tube?

It is not recommended to put anything else other than the prescribed feed through the tube. This can cause blockages and can potentially cause infections due to contamination.

What is over-granulation and what do I do about it?

Over-granulation is the overgrowth of skin around the stoma. This might happen because your body is trying to repair the surgical incision. Although over-granulation can be common and isn’t an emergent situation, you may require treatment. You should contact your healthcare professional if this happens to you or your loved one.

What do I need to tell my work colleagues?

Most people find it easier to be open with their work colleagues about why they need tube feeding and how it works. If you explain this to your colleagues, they’ll be more understanding when you might have to withdraw yourself to feed from time to time. The more relaxed you are about it, they more they will be.

Can I continue to work?

There are many examples of people that still have a working life while tube feeding. Discuss with your healthcare team how you can best adapt your feeding routine to the working situation.

Am I going to be able to have children?

Tube feeding itself should not stand in the way for you to have children and tube feeding can be well combined with raising a family.

Can I go swimming? Have a bath?

For about 2-3 weeks after you’ve had the PEG or jejunostomy placed, you should only take showers to give the wound area a chance to heal. Thereafter, taking a bath, showering or even swimming is possible as long as your tube is well protected and the wound area has healed and is healthy. You can protect the tube with a waterproof wound bandage. You should, however, avoid sources of poor quality water when swimming. If you’re unsure, talk with your doctor about what’s safe and possible for you.

How physically active can I be?

Doing physical activity or light exercise is healthy if your condition allows it. Just be sure to protect your tube and the skin around the tube as much as possible, and avoid big sudden movements that could dislodge your tube. There are different tools available to make it easier to go outside or move around – ask your doctor or a member of your healthcare team about what might help you.

Can I still go on holiday?

Whether you’re being tube fed or you’re caring for someone else who is tube feeding, travelling is possible. There are some unique challenges and considerations to take, but your healthcare team and tube feeding provider can give you the guidance you need. It’s helpful to get a letter ahead of time from your healthcare professional that states the special needs required. You’ll also have to make sure that you have the necessary feed and supplies with you, or to find out if your feed is available at your destination

How can I prepare my child for school and prepare the staff?

Children who are tube feeding usually continue to go to school as normal. You’ll need to inform the school that your child has a tube in place and if they need feeding during school hours. The school may need some basic information regarding the tube. If your child will be receiving feeds and/or medications through the feeding tube during the school day, the school nurse or carer may supervise. Training may need to be arranged, and this can be discussed with your child’s dietitian or nurse.

Can I eat normal foods while being tube fed?

Your healthcare team will let you know if you or your loved one is able to eat while tube feeding. If you are able to eat, you’ll be given information about the types of food and amounts that are safe. If you’re being tube fed because of a swallowing difficulty, you might be visited by a speech therapist in hospital who will advise you on what types of food are safest for you or your loved one.

Can I eat normal foods while being tube fed?

Your healthcare team will let you know if you or your loved one is able to eat while tube feeding. If you are able to eat, you’ll be given information about the types of food and amounts that are safe. If you’re being tube fed because of a swallowing difficulty, you might be visited by a speech therapist in hospital who will advise you on what types of food are safest for you or your loved one.

How can I help my child who cannot eat?

Children who are tube fed and cannot eat can become anxious about eating and other things associated with their mouth, such as teeth cleaning. It’s important to promote pleasurable experiences or sensations around the mouth and there are many ways to do this. A speech and language therapist can give you advice and recommend activities to do with your child. These may include:

  • Encourage your child to put objects such as teething rings or soothers in his or her mouth
  • Touching your child around his or her mouth
  • Playing mouth games such as blowing kisses and raspberry sounds
  • Messy play with non-food or food items
  • Introducing food smells
  • Offering food tastes – your child’s medical team will let you know if your child is allowed to taste food. If your child is allowed to do this, allow them to taste at the same time your child is being tube fed. This will help your child to associate the smell, taste and sight of food with the feeling of hunger being satisfied
  • Include your child in the social occasion of family mealtimes