Tube Feeding
Tube-feeding is not something to be scared about. Many severely affected people are tube-fed and although not a pleasant experience, it is something they get used to.
Although this site can’t give you all the medical information on tube-feeding it can give you some tips on how to make tube-feeding easier.
Most people have a Nasal-Gastric (NG) tube, this is one that is put down the nose into the stomach. Some severely affected people even put their own tubes in.
If the NG tube becomes a problem, especially if you keep being sick, then you can have a Percutaneous Endoscopic Gastronomy (PEG) this is a tube that is placed directly into your stomach through an incision in your abdomen. This can be a good option if NG tubes aren’t possible; but great care has to be taken to avoid infections.
Inserting the Nasal-Gastric Tube.
Don’t use bulk forming products like “Fibrogel” as this will swell and block the tube.
You can be tube fed at home, this does mean a lot of work for the carer; but it depends what is the best option for you and your family.
Although this site can’t give you all the medical information on tube-feeding it can give you some tips on how to make tube-feeding easier.
Most people have a Nasal-Gastric (NG) tube, this is one that is put down the nose into the stomach. Some severely affected people even put their own tubes in.
If the NG tube becomes a problem, especially if you keep being sick, then you can have a Percutaneous Endoscopic Gastronomy (PEG) this is a tube that is placed directly into your stomach through an incision in your abdomen. This can be a good option if NG tubes aren’t possible; but great care has to be taken to avoid infections.
Inserting the Nasal-Gastric Tube.
- RELAX as the tube is being put in. The natural reaction is to tense up but this will make things harder.
- Silk tubes are easiest to go down and are thinner, so are more comfortable. Also long term tubes are a lot more flexible and can last up to six months before changing e.g. Freka tubes.
- Most tubes have markers &/or numbers along them, so you know how far it has to go in. Keep a note of the number so you can tell the nurses when the tube is changed.
- Soak the end of the tube in water to soften it first. You can use Aqua gel but this has a strong taste, which can aggravate nausea.
- If possible try to swallow calmly and regularly as the tube goes down, pausing between each swallow. This makes it easier. Then try and have a drink afterwards.
- You can have an anaesthetic spray to help numb your throat before the tube is put down.
- It is possible to have a slight sedative to help you relax. It is very light and you are fully conscious, it just helps your throat relax.
- If you have been tube-fed for a long time you may develop scar-tissue in the nasal passage, which can make inserting the tube difficult. You can use a nasal spray for polyps, which opens up the nasal passage.
- To check the tube is in your stomach and not your lung you can connect an empty syringe to the NG tube and draw back some fluid. Test the fluid with litmus paper. If it turns bright pink then you have drawn stomach acid and the tube is correctly positioned.
- If the tube does accidentally go into your lung, you usually know straight away, because you will start coughing and gagging - even if you are semi-conscious. However, the moment the tube is pulled back out you will be okay again.
- If you are sick, pull the tube out of your nose and then consult a doctor about having a new one put back in.
- Stick the tube to your cheek rather than your nose as it is more comfy and doesn’t get pulled as easily. You can then tuck it behind your ear out of the way.
- If you have sensitive skin and are allergic to normal adhesive tape you can use hypoallergenic Micropore or Hypafix. Alternatively put the tube through a hair clip.
- The most common feeds are Jevity & Ensure, but they can be thick & heavy on your stomach. You can get different specialised feeds. "Perative", is a semi-elemental ("pre-digested") feed. "Elemental 028" is usually used for people with Crohns or Coeliac Disease; but if you have problems absorbing a heavy feed then this is a good option. It's fully elemental ("pre-digested'), so your stomach doesn't have to struggle to break down the feed to get the goodness from it.
- If you have allergies make sure you check the ingredients of the feed.
- Depending on what type of feed you have, you can liquidise food to put down the tube; but consult with your doctor. Make sure the feed is completely smooth as it is very easy to block your tube.
- If you are loosing a lot of weight you can be prescribed “add-ins” of extra calories, protein, vitamins and minerals. After a while you may start putting on too much weight and then you should consult your dietician about slowly reducing the amount you are receiving. They may not be keen on this; but stick to your guns.
- Have the feed put down slowly, especially if you suffer from nausea. You can gradually increase the speed as you get used to it . Some people eat small amounts during the day and are tube fed at night.
- Some people enjoy the cold feel of the feed; but you can have it warmed up.
- Liquid medications are easiest to put down the tube but can aggravate nausea. Tablets can be ground up to a fine paste with a pestle and mortar and then mixed with cold water, so they don’t block the tube.
- Constipation can be a problem, so you can put fruit juice down the tube very slowly, using the pump, when the feed isn’t going through. Prune juice is the best one; but doesn’t look very nice and can cause nausea. Any fruit juice is good.
Don’t use bulk forming products like “Fibrogel” as this will swell and block the tube.
- Always flush your tube out with at least 10-20mls of clear water after putting anything down.
- If the tube gets blocked then there are several things that can be put down it, while it is still in the stomach, to clear it out. Try coke, lemon juice or bicarbonate of soda.
You can be tube fed at home, this does mean a lot of work for the carer; but it depends what is the best option for you and your family.
Claire Wade. Studio 17659, PO Box 6945, London, W1A 6US
This site is written by someone who is severely affect with ME and is compiled as a result of personal experience and research of other people with ME and their families. It is intended for information and guidance only. It is not intended to replace medical advice. Readers are strongly urged to consult a professional medical practitioner for a proper diagnosis or assessment before trying any of the treatments or medications outlined. As with all medications, always consult your GP, specialist or pharmacist and tell them about other medications or herbal preparations you are already taking; always read the label and patient information leaflet.
The contributors to this website are not medically trained but all live with or have significant experience of ME. The tips may not be suitable for everyone. No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author.
No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise), except for personal or non-commercial use without the permission of the author.
Claire Wade has asserted her right under the Copyright, Designs and Patents Act of 1988 to be identified as the author of this work.
The contributors to this website are not medically trained but all live with or have significant experience of ME. The tips may not be suitable for everyone. No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author.
No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise), except for personal or non-commercial use without the permission of the author.
Claire Wade has asserted her right under the Copyright, Designs and Patents Act of 1988 to be identified as the author of this work.