The last two years

Two years ago, September 2017, I stopped being able to swallow properly. My diet suddenly dropped to include less than a handful of options. This was to be the start of a significant change in my health and life.

In November I was admitted to hospital for the first time in my life. For three hellish weeks. I repeatedly explained to numerous people what was going on with my swallow. Repeatedly I was disbelieved. Tests came back saying I was fine and nurses reacted by telling me there was nothing wrong so I could swallow. I had my first NG tube and when I got distressed and questioned the level of discomfort I was experiencing with it the nurse told me I should have just eaten so I wouldn’t have needed it. It was clear I wasn’t being listened to with open minds. The first 16 or so days I was in hospital I was getting no food and very little (very very little for me) fluids and no medication. So that included no pain relief, no antidepressants and no antihistamines despite horrific allergies. No one seemed to understand why I thought this was a problem. I would later be sent home with ‘magical medication’ which would surely fix me and told it’d be reviewed in four weeks.

This meant four weeks with very little food because the tablets would take time to work, if they worked at all. No one seemed to understand, or at least acknowledge, why I was distressed by this. Everyone was just focused on how great it was I’d be home for christmas. There was no back up plan.

Six weeks after that, in what my nice gastro described as ‘a bit of a pickle’, I was finally re-admitted to hospital. By this point I was once again starving, dehydrated and was violently sick every time I moved. I was so ill that they couldn’t give me the NG tube I had begged for through tears just two weeks earlier. Most drs still didn’t believe me. One refused to tell me what the plan was once an NG tube was in because I wasn’t co-operating (I was violently sick when they tried to put the tube in but she read that as uncooperative). She had earlier decided that the way forward was refering me to the eating disorders team which I know is a long wait and I also repeatedly told her it wasn’t a relapse of my anorexia. She just kept asking how would I know? She went on to get me assessed by the mental health team and thankfully they realised I was in a drastic situation and was reacting much as most people would, that my mental health was suffering but wasn’t causing my swallowing issues.

I have since found out that in the run up to that second hospital admission j was hallucinating . I knew things were bad but until recently I didn’t know how bad…

Eventually the good dr won out and I was able to get the PEG tube that we both knew I really needed. The first try failed because my stomach was in the wrong place … so it took a second attempt to get the tube in me. During this hospital stay I had multiple days of being nil by mouth or tube, more days like that than days being able to eat or drink I think, because various tests were being run. They were concerned about my blood sugar levels which was ridiculous because if you havent eaten in months, they were going to be squiffy…

Whilst still in hospital I had issues with my care company and it became clear I needed to change. This has been reiterated by the much improved care I’ve had with the new team. But getting used to new staff, getting people trained up etc is all tiring, hard work. And I was recovering from starvation and all my EDS symptoms got worse whilst I wasn’t able to eat. I also gained new symptoms.

One of these new symptoms was wobbly lenses in my eyes. This limits how much I can read at once, how well I cope with movement and can lead to me feeling very seasick when all I’ve done is scroll through instagram. Yet another thing to adapt to and change to cope with. I now have pink tinted glasses which help a lot but I still have symptoms because of my eyes and I can’t see distance as well as I used to, something that means it’s incredibly difficult to use binoculars and which affects my ability to see through my camera viewfinder.

I also lost physical strength as well as awareness of my body. When I was in hospital the second time, if my eyes were closed, i didn’t know if i was laying down or sitting up. And that is something that hasn’t fully recovered although is vastly better than it was.

Today, two years on, I am incredibly grateful for my feeding tube. I no longer have to worry about my calorie intake, or how I manage to maintain my high fluid needs or how im going to swallow my medication. I have figured out the random things I can and can’t eat or drink and I’m happy with where things are. I have the energy to get out of bed, to leave the house and even to go on holiday. Everything has changed significantly. And what I’m most grateful for is that I got to share my two year ‘anniversary’ with my best friend who had shared a room with me almost exactly two years ago. A couple of weeks after my swallow broke, she put up with my odd eating and awful exhaustion. Months later, despite being 200 miles away, she spoke with my doctor and fought with them to get me the care I needed, and I love her.

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.

Anyway.

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!

General

  • 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

Leaks

  • 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

Medication

  • 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?

One Wednesday night…

Picture the scene: It’s Wednesday evening.  I am sitting in bed, watching something unnoteworthy on my laptop.  A glass of wine and a bag of crisps are on the trolley next to my bed.  My nose starts to bleed.  And bleed.  And bleed.  Eventually it stops.  So far there is nothing of note, except perhaps that I only started getting nose bleeds a couple of weeks ago.  Up until then my nose was cooperative.

I look down.

My stomach is covered in bright red fluid.  And more is gushing out of my skin.  The hole in my tummy is leaking quite profusely.  My peg site is bleeding.

The thing to do in this situation is to call the helpline number you are given when you first get your feeding tube.  So I do. They take my details and assure me a nurse will call back within twenty minutes.  I wait and I wait.  So many possibilities are flooding through my mind as I sit nervously looking at the phone.  Eventually it rings and I am told to go to a&e.  Reluctantly I oblige, it is 8.30pm now, I know I’m in for a long wait and a late night.

As I get into my carer’s car, I see a slither of pale gold moon.  It’s been a long time since I saw the moon.  I am hooked up to my feeding tube at 7pm and until 8.30am I am restrained by a 4 foot leash.  The moon does not fit into such man made constraints.  Despite the circumstances, I smile involuntarily.  It’s been a long time since I saw the moon.

After what feels like several days and several nights sitting under the bright lights of the waiting room, we are called in to see a doctor.  My stomach is pressed and I giggle, my tummy is ticklish.  A light is shone up my nose and she peers at the back of my mouth.

A nosebleed from my tummy.  That is her diagnosis.  We laugh.  We exclaim.  And I hurriedly text my closest friends hoping they will share my amusement.

All the way home I am tickled by this.  But I know that I will sleep with a towel, just in case it flares up again.  Blood stained sheets and pyjamas are less funny.

We pull up outside my flat and as I get out, I look up.  The night is scattered with stars.  They weren’t there when we left; the dusky sky had been stage only to the moon and to Venus.  Now, the myriad of dots join to form a bear, or a saucepan, Ursa Major.  My heavy eyes scan the sky looking for other familiar patterns.

It’s been a long time since I saw the moon.  It’s been even longer since I saw the stars.  But I haven’t forgotten.  The Great Bear, the Little Bear and that starry queen, Cassiopeia, are etched on my soul.  The three constellations that I always remember.

For the briefest moment, the blink of an eye, I am transported back to my parent’s driveway.  Staring up at the starry sky, standing next to my dad, trying to figure out what he’s pointing to, attempting to look through his eyes.  It’s a cold, winter’s night and I’ve just got home from Guides.  There were more stars then.

Other creatures hide in the clouds, disappear behind houses and fall away as tired eyes close.  The door opens and I fall into my flat.

Feeding tubes: PEG

For short term feeding, NG and NJ tubes tend to be used but for long term artificial feeding, a PEG is one of the main options. PEG stands for percutaneous endoscopic gastrostomy which means it’s inserted with a needle through your skin with the help of an endoscopy and creates an artificial external opening into the stomach. You may also hear this called a g-tube, particularly I think in America.

The process

The process of putting in the PEG is normally very straightforward. You get given some sedation to make you drowsy and then hopefully you remember nothing. But if you’ve had an endoscopy before then it’s much the same except they also make a hole in your tummy which will have been given local anaesthetic. My first attempt didn’t work as my stomach wasn’t quite where it was supposed to be…

When you come round you’ll feel sore, after all you’ve had a hole put in your stomach which goes through skin, fat, muscle and the stomach wall. You may experience trapped wind which is very common after the procedure and there will be pus and fluid around the site. The hospital will advise you about how to care for the site, when you can wash it etc.

If you can, the best thing to do to help yourself feel better is to move around. It’ll hurt but it’ll help. Pelvic floor exercises are another suggestion and I found variations on the knees to chest yoga pose (with gentle rocking back and forth and side to side) and ‘windscreen wiper’ pose helped with pain and with strengthening my core.

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My PEG

I’ve had my PEG exactly four weeks and I’m pretty much pain free around the site. When I had mine inserted I was very weak and had lost a lot of strength and muscle tone etc so I would think if you have the procedure done when you are healthier, you won’t have much recovery time at all.

As well as keeping the site clean, you’ll also need to advance and rotate it at least once a week. You’ll be shown how to do this and it’s really easy. I was a bit worried it would hurt (the tube gets pushed into your tummy and turned so that it doesn’t get stuck in your stomach wall) but it doesn’t. It can feel a bit strange, especially if you think about it too much, but no pain.

The feed

I’ve touched on feed already when I talked about NG and NJ tubes but I wanted to say a bit more. There seems to be a trend in the US to blend your own feed but in the UK I think it’s standard practice to use the packaged bags of feed from nutrition companies.

There are various makes and what you end up with will most likely depend on which company your hospital buys from. Your dietician will work with you to find the feed which meets your nutritional needs and which agrees with your body. It comes in bags and bottles and does not look anything like food. It doesn’t smell nice and it’s a funny colour, but in a lot of cases it’s probably saving your life so these things don’t matter so much.

The feed gets into you via a pump and you and anyone else who might use it can be trained although it’s very straightforward.

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At some point, you will spill some of the feed. In my case, when I was in hospital, the PEG came detached from the feed and it went all over my bed. You may not want to, given it’s likely the middle of the night, but act quickly. The feed dries like cement and it will stain things. Be especially quick with teddies, mine still bears a grudge about the feed which ended up in his ear…!

The other vulnerability to spillage comes if you forget to put the clamp on when you’re putting water or medication down the tube. I have a towel with all my peg equipment so that every time we do something with the tube, we put a towel on my knee.

A lot of people who are on artificial feed are fed overnight. This means it doesn’t impact on your life as much, although if you are being fed during the day there are backpacks and things which can make your life easier.

Eating, or missing eating

“Many of us have odd habits to kick the drive for oral consumption such as gum, flavored drinks, lozenges, hard candies, or even chewing up food and spitting it out!”
Tube Fed Wife

I can eat a little and can drink a lot of stuff so I’m making use of that to get flavour into my life.  For example, ice pops can be made at home in all kinds of flavours.  And crisps which dissolve in your mouth like cheetos and skips can be easy to eat and give you a satisfying crunch.  I’ve been able to go back to eating sweet potato chips provided that I don’t get them too crispy and I don’t try and eat many at once.  Adding in melted cheese also provides some lubrication which can help with swallowing.

If you or someone you know is being fed by a tube, remember that food is often much more than nutrition.  It can be a social activity, it can be routine, it can be celebration and you’ll need to think about how you can enjoy these things despite the feeding tube.

I had a long lead up to my feeding tube so had some time to think about these things and how I would cope with them.  Because I can still eat a little and I can drink, it’s not going to be so hard as it might be.  When I go out with friends I can have a drink and watch them eat.  I’ve got a long history of eating difficulties anyway so I’m used to going for a meal and ending up with just a plate of chips.  This isn’t going to be a big adjustment for me.  Also, my social life doesn’t really revolve around food.  The same is true for celebration.  But if your life does, then having something to suck on for flavour or chewing gum or similar may help you feel more involved or bring your feeding tube into the celebrations!

And there is always the option to chew and discretely spit out your food.  Do it into napkins or take a little tub (with lid) along with you.  If you can have a tiny taster of something then do that, even if it means you’re having ice cream whilst everyone else tucks into a takeaway.

But also, look after yourself.  If you know that your friends are going to your favourite restaurant of all time and that it’s going to be upsetting to be there and not be able to eat, then join them after.  And talk to your friends and family.  This is likely to be an adjustment for them, especially if you always meet for coffee and cake.  Explain what you feel comfortable with and if you aren’t ready for food related socialising, have a think about what else you could do together and how else you could celebrate events.

Feeding Tubes: NG and NJ Tubes

There are various different types of feeding tube which enter your body in different ways and go to different parts of it. I’ve had an NG, NJ and a PEG and I wanted to share some of the things I’ve learnt and tips I’ve picked up as I would have found them useful.

NG Tube

An NG tube goes in through your nose, down your throat and into your stomach. Having it inserted isn’t the nicest of experiences but there are things you can do to make it better. Have music playing to distract you, squeeze the hand of someone, swallow water through a straw as it’s being put in and remember to breathe. Also, you have the right to request a different member of staff if you aren’t comfortable with the person putting it in. My first NG tube was put in by a nurse who thought I was making my issues up, needless to say, she wasn’t very gentle with me. Or at all reassuring. Having a nurse that I was comfortable with, that I liked and that I felt listened to me made the experience a lot easier.

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Me and my NG tube

On one occasion my NG tube placement failed because my nose was blocked. Avoid this! For the next attempt, I got some Halls Soothers to suck on to clear my head. These also came in useful once the tube was in. Because your throat isn’t used to having a plastic tube down it, you will probably feel some discomfort. Sucking on ice pops and cough sweets can help ease this a bit (assuming you can safely manage them, check with your medical team).

I found the NG tube to be uncomfortable the whole time it was in but there are ways of reducing this or at least not making it worse. I found turning my head and keeping it turned for too long led to irritation. Similarly if I talked for too long or if I bent down. Basically anything that would move the tube too much was uncomfortable. But it eased off if I returned to having my head facing forward and my chin up. This applies to sleeping positions as well. They recommend sleeping at a 30 degree angle if you’re being fed via your tube anyway but I found this to be the only position I could actually sleep in from a comfort point of view.

Having fluids or food down an NG tube feels weird, at least at first. Because the temperature of the liquid is different to the temperature of your body, you can feel it moving across your face and then down your throat. The first time this happened I wasn’t expecting it and I started to gag. My body seemed to think that I was drinking but that I wasn’t swallowing and I freaked out. Just breathe gently and get the nurse to talk to you as a distraction. After a while it feels normal and you won’t notice it.

NJ Tube

An NJ is very similar to an NG except it doesn’t go into your stomach, instead it goes further into your digestive system, ending in your duodenum or jejunum. Mine was put in whilst I was sedated so I can’t tell you anything about the procedure but I understand it’s much the same as the NG.

That said, I much preferred my NJ. Perhaps it was because I hadn’t been aware of the insertion but it felt more comfortable and more stable. I think the tubes themselves are softer as well. The disadvantage of an NJ tube is that you can’t have as much feed going in you at once compared with the NG. This is because feed can sit in your stomach and wait to be digested whereas feed from the NJ has nowhere to sit. This meant I was on my feed continuously. Not a major problem but taking a drip stand everywhere can be a pain!

Both the NG and the NJ tubes can feel worse when they ‘hang’ as they pull on the tube inside you. I employed a couple of strategies to take the weight off my tubes. Firstly, I hooked it up and around my hairband. Secondly, and this is a slightly stranger look but works well, is I hooked an elastic band around the tube and used a hair clip to attach it to my hair. This meant it have enough give that I wasn’t pulling the tube if I moved and took the weight off the part of the tube that was down my throat. You might also want to look at ways of taping the tube to your face, some nurses are better than others when it comes to that… I believe you can also get stickers which mean you look less medical – and who doesn’t want a dinosaur on their cheek?!

A note on feed

Your dietitian will probably prescribe you a standard feed. When you first start on it you will probably experience diarrhoea. Depending on your other health issues, you may want to ask the hospital for some incontinence pads. Especially if you’re in hospital and sharing the toilet with other people. As awful as it feels, it’s good to have the back up of the pads. When I was in hospital most recently I was violently sick every time I moved so getting to the toilet was an ordeal and it took ages because I couldn’t walk. This meant getting a nurse who then had to get a commode and then get me to the toilet, providing of course the toilet wasn’t in use.

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My yummy feed…

There are other types of feed out there, if you aren’t getting on with one, talk to the dietitian as they can explore others. For example, the one I was put on to start with was repeating on me and tasted of meat, which as a vegetarian was really unpleasant. If you find the diarrhoea continues, they might explore feeds with higher fibre etc.

Depending on why you needed an NG or NJ tube, you might also still be able to eat and drink. In my case, I could still drink and I collected a range of different flavours and types of drink to keep life interesting. I also craved certain foods and I was able to suck on ice pops. I also sucked on spicy roasted chickpeas for the flavour and salt and then spat them out, discretely I’d like to add! Avoid toffee and you might want to start with moister foods if you’re able to eat.

I’m also going to do a post about my PEG and what I’ve learnt, tips I’ve picked up etc.