Feeding tube hacks!

I have a PEG feeding tube and it has given me my life back, but it isn’t problem free. I’ve written about tips before but of course I’m always learning new things so I wanted to do another post.


You can end up with a lot of equipment – bags of feed and water, syringes, tubing – and you may not want to pile boxes up in the corner of your bedroom or lounge…

I have a set of beautiful wooden drawers that store my smaller bits and pieces such as the syringes and spare parts. In a kitchen cupboard we store tubing and a week or so of feed and water bags, the rest of which we keep on a bookcase and in the hall cupboard. I like to have nice storage as it makes my flat feel less medical but talking of which…


We have two peg baskets, one for morning medication and one for evening medication, the points in the day when I have most medication.

I discussed how I use a pestle and mortar, tea strainer and medicine pots in my previous post so I won’t expain that again. One addition is a small tea tray that we use to carry the prepared medication from the kitchen to wherever I am in the flat. An alteration we have made is that when we leave the house, we no longer use the soup cups to take flush water as they started to leak a lot. Now we use small kids drink bottle, if you’re looking to find something, think about having a wide neck so that you can get to the water more easily.

Bits and bobs

Since my last post, my PEG has been changed and has a little more discharge than it used to so I have started using tubie pads from etsy. I also forgot to mention the value of pliers! Every so often the giving tubes get stuck to the PEG and pliers will come to your rescue. Make sure you take them with you when you go away as that will certainly be the time it gets stuck.

Having had some leaks overnight, I’m grateful that I have an easy to wash rug beside my bed.

If you are prone to hospital trips then a go bag should include feed and ephemera, don’t assume the hospital will have your feed in stock or be able to get it easily. Also, take medication with you.

Bags and more

I have seen some tubies using rucksacks designed for hydration as they often have an internal loop to attach the feed bag to and a channel for the tubing to get from inside to outside. I’m wondering if the headphone port on many bags could also be used.

I have also come across, but not tried, the free arm which looks like it could be used to attach a feed set up to a wheelchair, table or other structure.

I have recently had to extend the amount of time I am hooked up to the pump and in lockdown that has been fine but once I re-enter the world, we are going to need a way of taking the pump and water out too.

As I already have a specific wheelchair bag that fits all my stuff in, I didn’t want to go down the rucksack route. I do also have a bag designed for the pump and feed but it is boring and black, and the way its designed means the tube kinks a lot and causes errors.

So, after a bit of thought and experimenting, I discovered that the pump attaches onto a tripod. Specifically, a Joby Gorillapod.

Nutricia florcare Infinity pump attached to a Joby Gorillapod
Nutricia Flocare Infinity pump attached to electric wheelchair handle with the Joby Gorillapod
Nutricia Flocare Infinity pump attached to electric wheelchair handle with the Joby Gorillapod and the water bottle hooked onto the wheelchair headrest

The longer term plan is to get a caribiner hook to attach the water/feed bag, the photo was just us trialling the idea.

Please share your own tips and tricks below!

A short history of feeding tubes

Whilst you’re probably vaguely familiar with nose and stomach feeding tubes, it hasn’t always been that way… rectal feeds were once the only way… and up until the 1940s the rectum was used for water, saline and glucose solutions.

The first recorded attempt dates back to ancient Egypt when reeds were used to give rectal feedings of chicken broth, wine and eggs. Rectal feeding was used as there was no way to reach the upper GI tract without killing the patient.

There is a long period before any known, recorded developments in artificial feeding.  In Spain, in the 12th century Ibn Zuhr attempted parenteral nutrition, supplying nourishment intravenously to a human with the aid of a hollow silver needle.  It is unknown how successful it was.

A few centuries later, in 1598, Capivacceus used a hollow tube with a bladder attached to one end to reach as far as the oesophagus.  This thinking was developed and in 1617 Fabricius ab Aquapendente used a silver type of NG (nasal gastric – nose to stomach) tube that went as far as the pharynx for patients with tetanus.

In 1646 Von Helmont used leather to create a flexible, hollow tube that patients would swallow and it would feed into the top of the oesophagus.  A syringe was used to deliver blended food.

By the mid 17th century, thinking was focused back on parenteral feeding:

“The idea of providing nutrients intravenously in humans was first realised when Sir Christopher Wren injected wine and ale in dogs way back in the middle of the 17th century.”
– Ahmad Fuad Shamsuddin

Wren had invented an IV made of goose quills and porcine bladders and was also able to give opiates to dogs through this.  There were issues and in 1710 Courten concluded that fats needed to be manipulated before being administered through an IV.  Despite these developments, IV feeding is a fairly new therapeutic tool.

In the 1700s physicians experimented with blends of wine, eggs, jellies and milk and in 1710 it was suggested that the leather tube could be used to reach down into the stomach.

Another stepping stone in the history of feeding tubes saw John Hunter, in 1790, using whalebone covered in eel skin attached to a bladder pump to feed a mix of jellies, beaten eggs, sugar, milk and wine.  In the early 1800s, food blends included thick custards, mashed potatoes and pre-digested milk, whatever delightful thing that is…

During the first half of 19th century stomach pumps were used to feed severely mentally ill patients in England but it wasn’t a straightforward technique with complications including stomach lacerations and drowning in beef broth…

Apparently it was in 1837 that the first gastronomy was suggested.  That is a tube which goes into the stomach through the tummy.  It was attempted around 1845 but there were many complications including infections which couldn’t be dealt with as antibiotics hadn’t yet been created.

In 1867 Kussmaul introduced a flexible orogastric tube – a tube that goes from mouth to stomach rather than nose to stomach.  Three years later, in 1870, Dr Staton was the first surgeon in the US to perform a gastrostomy with long term survival.  The patient was an 8 year old boy.  Another four years and Ewald and Oser would introduce a soft rubber tube.

It would be 1878 before the first jujunostomy was attempted – that’s a gastrostomy which goes into the duodenum instead of the stomach.  But rectal feeding was still about and in 1881 the US president James Garfield was kept alive after being shot by being rectally fed beef broth and whisky.

Moving into the 20th century, we the early days of the central line which would lead to IV feeding and parenteral feeding as well as soft flexible tubes introduced to make artificial feeding more comfortable and more successful.

Unfortunately, paralleling this was the forced feeding of suffragettes.  This was a torturous affair made up of brutal attacks.  A primitive method of feeding was used that was painful – the tube through the nose was often too large and any resistance from the prisoner lead to further pushing, if the nasal tube failed, a throat tube was used which involved a metal spring gag.

Around 1910, Einhorn began experimenting with NJ tubes and shortly after, in 1916 continuous and controlled delivery of liquid nutrition was suggested when it became clear bolus feeding was not always tolerated.  The Levin tube, introduced in 1921 was very stiff and thicker than the tubes used today which are made of soft polymers such as silicone and polyurethane but was presumably progress then.  Another development came in the 1930s with feeding via a pump.

The literally life changing discovery of modern antibiotics in the 1940s changed the landscape of artificial feeding dramatically.  Many of the surgeries that had failed because of infection were now viable.  This was developed further in the late 1940s when polyethylene tubing began to be used and the first enteral feeding pump was developed.

In the 1960s, with the focus on space travel, work was carried out on nutrition to help astronauts get the right food and prevent malnutrition.  This information would later be used to create the formulas used today in tube feeding.  These were further developed in the 1970s.

In 1979, the PEG insertion technique was developed and performed on a 6 month old in the US.  This is a common method still used today which uses a cut in the stomach and an endoscopic tube – hence percutaneous endoscopic gastrostomy.  It’s this kind of insertion that I had.

I’ve written before about how grateful I am for my feeding tube, it has given me back my life and I am also incredibly grateful for all those innovative thinkers and all those unfortunate patients that have gone before me.  Thank you.

Sources and further reading:

My feeding tube; almost a year on

It’s been almost a year since I had my PEG tube (a type of feeding tube) fitted and as it’s also Feeding Tube Awareness Week, I wanted to take this opportunity to reflect on my journey.

Before getting my PEG, I had suffered almost 6 months of starvation.  I could barely swallow anything and the longer it went on, the worse it got.  By the end of it, I couldn’t even keep water down because my stomach was so angry with me.  I eventually managed to see the good gastro dr who immediately told me he was going to admit me to the ward to get a PEG.  Brilliant!

I know it’s an unusual reaction but by this point I’d already come to terms with the idea and just a few weeks before I had been begging, through tears, for an NG tube (a temporary feeding tube).  The way I was treated in that appointment still makes me angry today.  Instead of acknowledging that I was starving and incredibly ill, I was waved off with a prescription for acid reflux tablets that a) I’d already tried and they’d made things worse, b) contained lactose that I can’t have c) I couldn’t swallow them and d) I only had acid because I wasn’t eating.  I was also told she’d refer me to the eating disorder service despite me being very self aware and knowing that this wasn’t my anorexia returned.  She also said she’d send out some supplement drinks that contained meat despite me being vegetarian and also saying that I’d tried a similar type a few months before and couldn’t swallow them.  I had tried to explain that EDS is strange and just because the one test they did told them nothing, it didn’t mean there wasn’t a problem.

Anyway, back to the PEG.  Despite the good doctor saying I needed a PEG, and despite him outranking most people in his team, his colleagues continued to act as if I wasn’t going to get one.  Nurses tried to get an NG tube into me but failed for various reasons, one key one being that by this point I was the most nauseous I’ve ever been in my entire life.  If I moved, I was sick.  That isn’t especially compatible with having something shoved down your throat.  They told me repeatedly that I was being obstinate because I didn’t want to have food and they ordered an emergency mental health assessment, with the primary goal of diagnosing an eating disorder.  It failed.  I did not have an eating disorder.  I had a swallowing disorder.  Thankfully the mental health team saw that and told the doctors that I was in an expected amount of distress given my physical symptoms.

Eventually I got my PEG.

It was a long, torturous and dangerous journey.  I remain incredibly grateful to the doctor who continued to fight for me to have a PEG, without him on my side I don’t know what would have happened.  I imagine it would have involved seeing the eating disorder team, some severe issues with my internal organs, or death.


I got there.  Eventually.  And, as I knew it would be, having my PEG has revolutionised my life.

For six long months, I could barely get out of bed, let alone leave the house.  I lay in bed, with something playing on my laptop.  I would force myself to stay awake until 4pm when my carers came.  I went without medication because I couldn’t swallow it.  I was, thankfully, on pain patches and still able to swallow a small amount of liquid pain relief.  But I couldn’t take my antihistamines, my antidepressants, or the various other tablets I’m on.  I lost six months of my life because doctors refused to accept that there was anything wrong with me.  I was told to just eat.  I was told that the tests were fine and expected to just magically be able to swallow.

It took a good few months after my PEG was fitted before I had any semblance of a life.  My body had a lot of food to catch up on, a lot of internal healing it needed to do and a lot of weight to gain back.  But bodies are amazing and it got there.  I got my brain back, I got strength back and I got my life back.

My feeding tube has allowed me to go to the cinema, to go to the theatre, to go to the beach, to see friends, to go to uni courses and museums, art galleries and to do art myself!  I have been able to read and write and pay attention to documentaries.  I have been able to spend time in the park and pass time in cafes with cups of tea and books.

Some people see feeding tubes as a sentence.  I see mine as a liberator.

Feeding tube tips

It’s been almost a year since I had my PEG tube fitted to administer medication through and to feed me through.  In that time I have inevitably picked up tips and tricks which make things a bit easier for me and I figured someone out there might find them helpful, so voila!


  • You can get tube tidies to reduce the risk of tripping over or getting tied up in the extension tube
  • Some people use tube pads for comfort
  • I use, and carry with me, sterile wipes to clean my peg site each day.  It just means we know that they’re clean and that my site is being kept as clean as possible
  • Try and get a spare set of all the things you use, especially the repair kit
  • Make sure to charge the pump!  We do it daily just to be sure…
  • Keep some soda water in the house to use to try and unblock a blocked peg
  • We use a bottle drainer to rest the syringes etc on to dry as they are impossible to get dry with a towel


  • Sleep with a towel to hand in case of overnight leaks
  • Pop a towel on your lap when you are doing meds or attaching/detaching feed, again in case of any accidents
  • Take a towel out with you – I use a tea towel as they fold up nice and small
  • Sanitary towels are very absorbent, I have used them to soak up leaks and such


  • If available, take liquid medication
  • Instead of carrying around a bottle of paracetamol in your bag, just in case, try calpol pouches
  • If a liquid medication is sticky or thick, add a little bit of warm (sterile) water to thin it and make it a) easier to administer and b) less likely to block the tube
  • If you have tablets that you’ve confirmed you can crush (not all can, for example slow release tablets are no longer slow release if you crush them) then:
    • instead of a pill crusher, use a pestle and mortar
    • if the tablet has a coating then that can block the tube so you want to remove it to reduce the risk.  I use a tea strainer to sieve out the coating and get the medication in a 60ml medication cup as its a good size for the tea strainer
  • Use coffee stirrers (yep, the wooden ones you get at Costa) to mix water with the medication
  • Use a soup cup with a lid to keep your sterile water in.  They are (mostly) leakproof so you can take water with you and when at home, we rest them on the radiator so that the water isn’t too cold
  • If you are going out and need to take medication, precrush it if you are allowed (some are affected by this) and pop it in a little salad dressing tub

In public

  • If you are feeding or having medication in public, wearing a skirt or trousers is much easier and dignified than a dress… I have a lot of lovely dresses but they mean that when it comes to doing meds, I have to go into the toilets whereas with a skirt we can just carry on
  • Get a rucksack so that you can take your feed out with you should you need to
  • If I’m wearing a skirt, I tend to just have my (unattached) tube out and don’t really think about it but I know some people are more aware of theirs and you can tape it to your tummy to keep it out the way

I’m sure there are more things we do that make it easier but I’d love to hear from other people with tubes.  What tips and tricks have you picked up?

Home Artificial Nutrition Week 2018

6th – 12th August 2018 is Home Artificial Nutrition Week and is also the first summer I’ve had artificial nutrition so I wanted to do a post based around the questions that my friends have asked me.  Please note that these are my experiences and everyone is different.

For background info, I started having very mild swallowing difficulties a few years ago.  They slowly got worse and then in September 2017 they got dramatically worse.  I was barely able to swallow anything and essentially slowly starved until February 2018 when my PEG was fitted.

In no particular order…

How does it work? 

I had a PEG feeding tube fitted in February which goes into my tummy.  This is a plastic tube which is held in place by a bumper which sits just inside my stomach and another one sits outside on my skin.  The external part of the tube includes a clamp and a cap on the end.

When we do my medication we clamp the tube, unscrew the end and use a syringe to push meds through.  They are either already in liquid form or we crush them and mix them with water.  To ensure they get into my tummy and don’t just sit in the tube we also flush through some water.

Feedwise, we attach the bag of feed to a pump via tubing and then the tubing is screwed onto the end of my peg.  The machine is turned on, set up and then runs throughout the night.

What does it feel like?

On the whole, I don’t feel it.  If the water we use to administer meds is too cold or put in my tummy too fast then it makes me feel a bit sick.  The best way I’ve found to explain that is that it’s like getting up in the night and downing a huge glass of ice water whilst you’re still half asleep.

When I have effervescent medication eg disolvable paracetamol then I can feel it bubble up my throat which is very yukky…

The only other way I feel it is when my feed is on and I lay too flat or on my right side and then I experience reflux/regurgitation and can taste it a bit.

Does it hurt when the tube gets caught on things?

Yes and no.  One of the first things I get my carers to do is pull the tube.  This is to get them over the fear that they’re going to a) hurt me and b) pull the tube out.  It’s fairly stable and I only really get hurt (very mildly) when I lay on the hard bit of the tube or I get really badly caught on something.  It would be in the same sort of way as if an earring got caught I think.

What is actually in your feed?

The feed is made up of the vitamins, minerals etc that you need to live.  I have to say I haven’t looked too closely as I don’t really want to know… My feed is a soya based version but the dietician works with you to find out what is best for your body.  As an example, my feed has no fibre in it and that works well for me but you can get ones which contain fibre.  To start with there is a bit of trial and error whilst you try and figure out what is right for you.

Can you taste it?

Only when I have reflux or regurgitation.  It tastes slightly milky and sweet but it’s more just a generic food taste rather than anything else so it’s hard to describe.

Does it make you feel full?

Yes.  My dietician works out how much I need to consume daily and the amount of feed is worked out accordingly.

Can you eat or drink?  If so, what?

Whilst most of my nutrition is now through my PEG, I can still eat a little bit and I can drink a lot of things.  What I can eat is a bit random but stodgy foods are out and so are foods that you chew into little tiny pieces and swallow.  Sugar is also out the question and that does limit what I can drink.  I’m ok with diet coke for example but can’t do normal coke.  Sugar, for me, also seems to include natural sugars and I can’t drink apple juice or have sugary (dairy free) ice creams.

What do you miss?

This is one of those things that is going to be so personal but for me it’s salt.  Thankfully I can still eat a bit and so I just put a lot more salt on that.  I also miss things which sound boring like rice and pasta.  I don’t miss cake or most sweet things except for just before my period when I crave a bit of sugar.

Would you get drunk if you put alcohol down the tube?

It has been made very clear to me that only medication, water and prescription feed go down the tube.

However, theoretically, I would imagine you would get drunk and you would get drunk a lot quicker.  Think about how much alcohol you drink per mouthful (not including shots!) and then think about how you’d feel if that was a lot more – the faster you drink and the more you drink the drunker you get.  So given that you’d probably have a higher volume hit your stomach at the same time I think you’d not only get drunk but you’d get drunk a lot quicker.

As I said though, there are very specific things you can put down your tube.

Does it bother you when people eat around you?

No.  But I’ve always been a fussy eater so I’m probably more used to not eating around eating people than most.  When I was growing up I was fussy about texture and then I went vegetarian and then I found I couldn’t tolerate any lactose.  Add into this that I really can’t stand tomatoes and you can get an idea about how hard it was for me to eat out.  I often ended up with chips, bread and if I was lucky maybe a starter.

I think it also probably helps that I don’t really crave much but I don’t know how well I’d get on if someone had a beautifully made slice of marmite on toast* in front of me…

*It’s been years since I had this because I was by far the best person at making it and I just couldn’t bring myself to risk having badly made marmite on toast so I never asked my carers for it.

Do you burp the same?

Yes and no.  When I drink fizzy drinks quickly, I can feel my tummy expand a little – this is because of the external bumper which suddenly puts pressure on my skin when I bloat – and then there is a little release and I unbloat.  I am assuming that some of the gas is coming out the tube site but don’t know for sure.

The worst thing is actually when we put things which fizz directly into my stomach.  One of my medications gets dissolved in water and even after an hour is still fizzy.  When we put it down the tube we have to be very slow and even then it’s yukky.  I can feel the bubbles escaping up my oesophagus and then I do burp.  It’s the same as if I’d drunk the medication but somehow it feels worse given that it didn’t go down before it came back up…

Is the tube annoying?

The most annoying part for me is that I can’t lift the feed bag, pump and stand combo so once I’m hooked up I can’t move more than about 1.5m.  This translates as not being able to go to the toilet at night… But on the whole, it’s a vast improvement on not being able to get nutrition.  You can also use a small rucksack set up so if you were hooked up during the day you could go out and it would be fairly discreet.

The other annoyance is that I have a lot of dresses which means when I go out we have to find a toilet or somewhere so that we can do my medication otherwise I’d end up flashing my knickers at everyone…!

Do you like your feeding tube?

This may feel like a strange question to ask someone and if you do ask, most people expect the answer to be no.  The doctors did everything they could and then wasted time on things that were never going to work before they would consider a PEG.  In the eyes of the medical profession it seems to be viewed as a last resort, almost as a failure on the part of the doctor – they haven’t found out what is wrong with me and haven’t been able to fix me and on the whole they don’t like that.  But I view my PEG very differently.

Whilst my PEG is annoying at times, it means I can get nutrition and medication into me without it being a nightmare-ish struggle involving regurgitation and stress and frustration and having to eat a lot of the few things I can swallow in order to survive.  Even then I still wouldn’t be able to eat enough to live.  So with that in mind, I am happy to say I love my feeding tube.  It has given me my life back and what more could you ask for than that?

@PINNTcharity * #HANweek2018 * #enteralnutrition

If you have any questions, please feel free to ask away and if I can, I’ll answer them!