Feeding Tube

A feeding tube is a way to get nutrition, fluids and medicines directly into the stomach. It goes through a small opening in the wall of the tummy, so food and drink can reach the stomach without passing through the mouth and throat. The medical name for this is a gastrostomy.

The tube itself is soft and thin. One end sits inside the stomach; the other rests against the skin of the tummy. Feeds, fluids or medicines are given through that outside end. This is usually a few times a day, or sometimes slowly over a longer period. Between feeds the tube can be tucked away under clothing, and it needs some simple daily care to keep the area clean.

You may hear two terms for how the tube is first placed:

• PEG (percutaneous endoscopic gastrostomy) is placed with the help of an endoscope, a thin flexible camera passed through the mouth to guide it into position.
• RIG (radiologically inserted gastrostomy) is placed using X-ray guidance instead of a camera.

Both put the tube in the same place; the difference is the method used. A care team suggests whichever is safest and most suitable for the person, and breathing can be part of that choice. For some people, having a tube placed before breathing is significantly affected can make the procedure safer. This varies a lot from person to person, it is not a fixed deadline, and the decision always stays with you. Once the opening has healed, some people are able to switch to a low-profile "button" that sits flat against the skin, which some find tidier.

If it is still safe for you to swallow, having a feeding tube does not have to mean the end of eating and drinking by mouth. Many people keep eating and drinking for pleasure and use the tube for top-ups, fluids, medicines, or fuller feeding as needs change.

Whether to have a feeding tube is a personal choice. It is one option, not the only path. Some people choose it and some choose not to, and both choices are respected. You can decline a tube, and if you have one you can choose to stop tube feeds at any time; your care team, including palliative care, can support you with these decisions as part of advance care planning. These conversations can happen gradually rather than all at once.

A feeding tube is a small, soft tube that goes through the wall of the tummy directly into the stomach. It lets you take in nutrition, fluids and medicines without having to swallow them. You may hear it called a gastrostomy, a PEG (placed using a small camera) or a RIG (placed using X-ray guidance). The names mainly describe how the tube is put in.

It is one option, not a path everyone takes. Some people with ALS/MND choose a feeding tube, and some choose not to. Both choices are valid, and the decision is yours.

Why a team might raise it

As ALS/MND affects the muscles used for swallowing, eating and drinking can gradually become harder, slower or more tiring. A care team may suggest a feeding tube as a way to help when:

• Swallowing is becoming difficult. Meals take a long time, or food and drink feel harder to manage.
• Weight is dropping, or it is hard to take in enough food and fluid to stay nourished and hydrated.
• Meals feel exhausting. The effort of eating leaves little energy for the rest of the day.
• Taking medicines by mouth has become awkward or unreliable.

What it can help with

A feeding tube is simply another route in. It can help you keep up your nutrition, fluids and weight and take medicines more easily, and it can ease some of the effort, tiredness and worry that build up when eating enough by mouth becomes hard, by reducing how much you have to rely on swallowing.

It is honest to add that the research here is limited. No high-quality trial has compared having a feeding tube with carrying on eating by mouth, so its effect on how long you live or on your quality of life is not established either way. A feeding tube supports nutrition, and it does not reliably remove the risk of food, drink or saliva going down the wrong way. Your team can explain what it would, and would not, change for you.

It does not have to mean giving up eating

This is one of the most common worries, so it is worth being clear: if swallowing is still safe for you, a feeding tube does not mean stopping eating and drinking by mouth. Many people continue to eat and drink for pleasure and use the tube alongside that. It can be a top-up when they cannot manage enough by mouth, or it can provide all their nutrition. How it is used can change over time and can be shaped around what matters to you.

A note on timing

Care teams sometimes raise feeding tubes earlier than you might expect. One reason is that, for some people, having a tube placed before breathing is significantly affected can make the procedure safer and more straightforward. This is a general pattern, not a fixed deadline, and it varies from person to person. There is no single "right moment", and the choice always stays with you.

Choosing a feeding tube is not a one-way door: you can decline it, and if you have one you can adjust or stop feeds later. Your team and palliative care can support you in thinking these choices through as part of advance care planning.

A feeding tube is one option your team may talk about as ALS/MND changes how you eat and drink. It is not something you have to decide today, and raising it early does not mean it is needed right away.

When it usually comes up

Teams often introduce the idea of a feeding tube before it is needed, so there is plenty of time to think it over without pressure. Some common reasons it gets raised:

• Swallowing is changing. Food or drink feels harder to manage, or meals come with more coughing.
• Weight is dropping, or it is getting hard to eat and drink enough to stay nourished.
• Meals are taking much longer or becoming tiring, so eating starts to feel like work rather than something to enjoy.

Hearing it mentioned early can feel alarming, but it is usually about giving you room to plan calmly. It is not a sign that things are about to change suddenly.

Why timing can matter

Placing a tube is usually a relatively minor procedure, though what it involves and how straightforward it is varies from person to person. For many people it tends to be safer and more straightforward when breathing is still working reasonably well, because the procedure and the medicine used to keep you comfortable are easier to manage then. That is the main reason teams often raise it earlier rather than waiting.

This is a general pattern, not a fixed deadline. It varies from person to person, there is usually more than one way to place a tube depending on your situation, and being told "earlier can be easier" does not mean you have missed a window if the conversation comes later. The breathing tests that help your team weigh up timing are covered separately.

What stays constant is that the decision is yours. You can take time, ask questions, choose to have a tube or choose not to, and change your mind. If you do have one, you can also decide later to reduce or stop feeds. Your team and advance care planning can support you with that. Many people who have a tube still eat and drink by mouth for pleasure when it is safe to do so: it does not have to replace eating, and it can be used just for top-ups or for fuller feeding.

A feeding tube is a small, soft tube that goes through the wall of your tummy straight into your stomach. Having one is a personal choice, and some people choose it while some choose not to. This answer is about what the procedure and the days afterwards are actually like, so you know what to expect.

The two common ways it is placed

There are two main methods, named for how the team guides the tube into place.

• PEG (percutaneous endoscopic gastrostomy) is placed using a thin, flexible camera (an endoscope) passed through the mouth into the stomach. This is often done with sedation, so you are relaxed and drowsy.
• RIG (radiologically inserted gastrostomy) is placed using X-ray pictures to guide the tube, and often uses local anaesthetic to numb the area rather than full sedation.

Both reach the same result: a tube in the stomach through a small opening in the tummy wall. Which method a team suggests depends on your situation, including your breathing. The approach is chosen to be as safe as possible for you, and they will explain why one may suit you better.

What the procedure and recovery are like

The procedure itself is usually short. Many people have a short hospital stay around it, partly so the team can check the tube is working and help you get started; how long this takes varies from person to person and place to place.

It is normal for the area around the tube (called the stoma) to feel sore or tender for a few days while it settles and heals over the following weeks. As with any procedure there are some risks to be aware of. The most common is infection around the site, usually treated with antibiotics; less commonly there can be bleeding or the tube moving out of place. A tube that comes out altogether is urgent rather than something to wait on, and the day-to-day care answer on this card explains what to do. Because the procedure involves medicine to keep you comfortable, breathing matters here too, which is part of why timing and method are chosen carefully. If your breathing is already affected, it is worth asking whether the procedure should be done somewhere experienced in ALS/MND care, where breathing support is available if it is needed. Telling your team promptly about increasing pain, redness, swelling or leaking helps them sort out any problem early.

Part of recovery is learning to look after the tube. That means keeping the area clean and dry, flushing the tube, and giving feeds and medicines. This can feel like a lot at first, but many people and carers find it becomes routine with practice and support.

A few points to hold onto

If it is still safe for you to swallow, having a feeding tube does not automatically mean stopping eating and drinking by mouth. Many people keep eating for pleasure and use the tube to top up or for some feeds.

Some teams raise the idea of a tube earlier, before breathing is significantly affected, because the procedure can be safer and easier to recover from for some people then. This is not a fixed deadline, it varies, and the decision always stays with you. You can decide a tube is not for you, and if you have one you can choose to stop using it. Your team and advance care planning can support these decisions, without anything being forced.

For many people, a feeding tube does not mean the end of eating and drinking by mouth. This is one of the most common worries, and it helps to know that having a tube and enjoying food by mouth are not an either-or choice for everyone.

A feeding tube (a gastrostomy, often called a PEG or RIG) is a small tube that sits in the wall of the tummy and lets nutrition, fluids and medicines go straight into the stomach. But it does not have to replace eating by mouth.

It depends mainly on whether swallowing is still safe. Your swallowing team is usually a speech pathologist, often working with a dietitian. If they judge that some foods or drinks are still safe and comfortable for you, you can keep having them by mouth for pleasure. They can suggest which textures and fluids are easier to manage, and this can change over time, so it is worth checking in as things shift.

People use a tube in different ways:

• Top-up feeding. You carry on eating and drinking by mouth, and the tube adds extra nutrition, fluids or medicines when eating alone is tiring or not quite enough.
• Full feeding. Most or all nutrition and fluids go through the tube, which can take the effort out of mealtimes.

Some people use it mainly as a top-up at first and rely on it more over time, while others use it differently. There is no set path: it can be matched to what your body needs and what you want.

Swallowing can become unsafe, for example if food or drink starts going towards the lungs. If that happens, your team may advise against certain foods, or against eating by mouth, to protect your breathing and comfort. That advice is about safety, not about taking enjoyment away, and it is something to talk through openly with your team.

It is also worth remembering this is your choice. Having a tube does not commit you to using it in any particular way, and you can decide to stop tube feeds at any time. Some people choose a tube, some choose not to, and both choices are respected. Decisions about a tube, and about feeding later on, are good to explore with your team and through advance care planning.

A feeding tube (a gastrostomy, often called a PEG or RIG) is a small soft tube placed through the wall of the tummy directly into the stomach. It lets you take in nutrition, fluids and medicines without having to swallow them. A PEG is placed using a thin camera passed through the mouth; a RIG is placed using X-ray guidance, and may be chosen when breathing is more affected. Either way, it is one option for support, not the only path. Some people with ALS/MND choose it, some choose not to, and both choices are respected.

Here are the main things people tend to weigh.

Possible benefits

• A reliable way to get enough nutrition and fluids, which can help with maintaining or slowing the loss of weight and with staying hydrated, even when eating by mouth becomes tiring or harder.
• An easier route for medicines, which can be given through the tube.
• Less stress around mealtimes, because the tube can take some of the effort and pressure off eating.

It is honest to add that no high-quality trial has compared having a feeding tube with carrying on eating by mouth, so its effect on how long you live or on your quality of life is not established either way. A tube also does not remove the risk of food, drink or saliva going down the wrong way. For some people it may reduce certain risks linked to swallowing difficulty, but this varies a lot, and your team can explain what it does and does not change for you.

An important reassurance: if swallowing is still safe enough, having a tube does not mean you have to stop eating and drinking by mouth. Many people keep eating the things they enjoy for pleasure and use the tube as a top-up, while others use it for all of their nutrition.

Possible burdens

• It involves a procedure to place the tube, with some recovery while the site heals.
• Ongoing care of the tube and the skin around it, which becomes part of a daily routine, with some equipment to manage.
• Possible complications, such as soreness or infection at the site, usually manageable; your team will explain what to watch for.
• Getting used to it. Some people need time to adjust to having a tube, including how it looks and feels.
• It does not stop ALS/MND progressing. A tube supports nutrition and comfort; it does not change the underlying condition.

A note on timing

You may hear your team raise a feeding tube earlier than you expect. One reason is that, for some people, having a tube placed before breathing is significantly affected can make the procedure safer and more straightforward. This is a common reason teams bring it up early, so you have time to think without pressure. It is not a fixed deadline, it varies from person to person, and the decision always stays with you.

Can you change your mind?

Yes. This is your choice at every stage.

• You can decline a feeding tube if it is not right for you.
• If you have one, you can choose to stop tube feeds and flushes at any time.
• A tube can sometimes be removed later, depending on your situation. This is worth discussing with your team.

There is no single right answer, and a choice that fits one person may not fit another. It helps to talk it through with the people supporting you and to revisit it over time, because what feels right can change. Writing down your wishes, including decisions about feeding later in the illness, is something an advance care planning or palliative care conversation can support.

A feeding tube (a gastrostomy, often called a PEG or RIG) is one way to get nutrition, fluids and medicines straight into your stomach through a small tube in your tummy wall. Whether to have one is a personal choice. Some people with ALS/MND decide it is right for them, some decide it is not, and both choices are respected.

If your team has raised it, or you just want to understand your options, it helps to go into the appointment with your questions ready. You do not need to decide anything on the day. Below are questions many people find useful to bring.

Why now

• Are you suggesting this now, or raising it early so I can think ahead?
• What are you seeing that makes you bring it up at this point?
• If I am not ready to decide, when would we look at this again?

The procedure and the choice between PEG and RIG

• What would the procedure actually involve for me?
• Would you suggest a PEG (placed using a camera) or a RIG (placed using X-ray guidance), and why one rather than the other for me?
• How does my breathing affect the timing or the type of procedure? Is there a reason it may be safer to do this sooner rather than later in my situation?
• Where would it be done, and is that a place used to ALS/MND care with breathing support on hand if I need it?
• What are the risks and possible complications I should know about?

Recovery and everyday life

• What is recovery like, and how long before I feel back to normal?
• What will daily care of the tube involve, and who will help me and my family learn it?
• Who do I contact if the tube blocks or comes out, including at night and at weekends, and what should I do while I wait?
• How does feeding through the tube work day to day, and how much time does it take?

Eating, and keeping control

• Can I still eat and drink by mouth for pleasure if it is safe for me to swallow?
• Could the tube be used just for top-ups, or would it be for all my nutrition?
• Can I change my mind before the procedure, and can I stop tube feeds later if I want to?

Tips for the appointment

• Bring someone with you, and write the answers down or ask if you can record them.
• It is fine to say you need time to think, or to ask for written information to take home.
• If new questions come up afterwards, ask who you can contact between appointments.

There are no wrong questions here. This is your decision, and a good care team will want you to understand it fully and take the time you need. If swallowing changes are what prompted this, the swallowing support card covers that in more depth, and decisions about feeding later on are part of advance care planning.

Living with a feeding tube becomes routine for most people, and your team, including a dietitian and a nurse, will show you how to look after it. The main aims are keeping the tube clear, keeping the skin around it healthy, and using it safely.

Keeping the tube clear (preventing blockages):

• Flush with water before and after feeds and before and after medicines. Regular flushing is the single best way to prevent blockages.
• If the tube blocks, do not force it. Use water only. Carbonated or acidic drinks are sometimes suggested informally, but they are not recommended, so do not put anything other than water down the tube. Your team will have shown you what to try with warm water, and if that does not clear it, stop and contact them.

If the tube comes out: treat this as urgent, not something to watch and see. Contact your team straight away, and if you cannot reach them go to hospital or your local urgent care service, because the opening into the stomach can start to close soon after the tube is no longer in it. Do not try to put the tube back in yourself. Who to contact out of hours varies from place to place, so it is worth asking your team for that number before you ever need it.

Blended food through the tube: some people like to put blended food through the tube alongside or instead of formula feeds. This can be possible, but it needs dietitian guidance: the texture has to be smooth enough to avoid blocking the tube, and the diet has to provide enough nutrition. Do not start blended feeds without checking with your team first.

Medicines: many medicines can be given through the tube, but some must not be crushed or altered, and others need a specific form. Ask your pharmacist or team which of your medicines are suitable and how to give them.

The skin around the tube: keep it clean and dry, and tell your team if it becomes red, sore, leaky or smelly.

When in doubt, contact your team. The Nutrition & Weight card covers what goes into the tube, and your dietitian and nurse are the people to set up a routine that works for you.