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.

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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?

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!

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.

A little update

So I’ve not posted in about five weeks and what a five weeks that has been. I finally got admitted to hospital to have a PEG (percutaneous endoscopic gastrostomy) fitted which means special feed solution goes straight into my stomach. This very simple procedure took a lot longer than it should have because of interfering doctors who didn’t know me but felt a PEG wasn’t the way to go (without telling me what would be…). There were numerous attempts at NG tubes (through the nose) as temporary ways to feed me and there was the first, failed attempt at a PEG (my stomach wasn’t in the right place…). Then finally I got my beautiful, wonderful PEG.

Most people probably didn’t have that reaction to having a PEG fitted but I am so grateful for the energy and improved health that being fed has given me. There are downsides to a PEG and I’ll probably do a post about my life with a PEG at some point but right now it has transformed my life. Even though I’m still feeling rather ill, I’m so much better than I’ve been in months.

And with that in mind I am slowly starting to do some reading and learning about the sea for my nature and writing project. My last blog post said that I was going to pick up with birds again but I don’t think I’d anticipated such a gap between then and now (and I’m still not really up to reading or writing much). I’m thinking there may be a bit about sea birds as a transition between the two topics.

Regardless of the topic, I hope to be back soon!