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?

Swallow

This post is referring mostly to barn swallows which are just called swallows in the UK.  There are a number of swallow species which are closely related to martins and in some cases, especially when it comes to myth and folklore, the names are used interchangeably.

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“a most inoffensive, harmless, entertaining, social, and useful tribe of birds: they touch no fruit in our gardens, delight in attaching themselves to our houses; amuse us with their migrations, songs and marvellous agility; and clear out outlets from the annoyance of gnats and other troublesome insects.”
– Gilbert White

It would be quite easy to leave the summing up of swallows to White but I won’t!  The reason I’m looking at swallows today is that I’m getting my swallow tattoo this week!

Swallows live alongside us, having moved with us from caves to houses.  They amuse us, they coexist with us though our ups and downs, they share our lives and capture the insects we consider pests.  They were considered sacred to our gods, bringers of luck and are tied to a number of superstitions.  We often revere them, treating them with the respect that comes from the intimacy of living so close.

In many parts of the world swallows are encouraged to live alongside us, enticing them by providing nesting places, and unlike many other birds, there is no significant attempt to kerb their freedom with cages; using the carrot not the stick to encourage their companionship.  This is a good time to reflect on relationships you have and relationships you are kindling, are you using treats or threats to get the outcome you want?

At home in the air, swallows are incredibly manoeuvrable, twisting and turning as they use the sky as a stage for their acrobatics.  Streamlined and aerodynamically efficient, they spend very little time on the ground which led to the belief that they didn’t have feet.

“True hope is swift, and flies with swallow’s wings”
– Shakespeare

Sometimes in life we are busy flitting from place to place or task to task and need to slow down however the swallow also brings with it an ability to switch from directions quickly and deal with changes well.  Perhaps this is a suggestion that you move and dance and twirl and spin and do cartwheels if it’s possible.  This kind of action and activity can get you out of your head and into your body.

They spend so much time in the air because they chase insects as they fly from flower to flower.  It is this insect based diet that makes them vulnerable or sensitive to changes in weather and climate.  Insects are less active when it’s cold or wet and so swallows find hunting much harder in these conditions.  Prolonged cold or rain can result in large numbers of swallows dying.  This is a key reason why swallows migrate hundreds of miles – swallows in the UK taking the epic journey to southern Africa, only to return again in Spring.

Aside: It’s probably due to a very sudden drop in sunlight that we’ve just experienced, but this is putting me in mind of Seasonal Affective Disorder and is a timely reminder to myself to start putting things in place to manage my mood for the coming winter.

Migration was not understood especially well until fairly recently.  In the 6th century BC it was said they headed to Egypt or hibernated.  A strange belief that took hold around the same time was the idea that they hibernated at the bottom of lakes and ponds, eye witness accounts were collected but experiments didn’t confirm this.  By the early 1700s the Royal Society amongst others claimed that they headed off to the moon for the winter.  As more and more people began travelling and saw swallows during the winter, the idea of migration became more reasonable.  Interestingly, Angela Turner writes of reactions to this:

“How could such small birds, especially youngsters barely out of the nest, find their way and fly to such distant places?  The idea that swallows and martins would just leave their home at the onset of cold weather also did not fit well with the concept of a well-ordered natural world created by God.  Surely God would make better provision for his creatures?”

These intrepid explorers make huge journeys every spring and autumn making them dedicated travellers.  It also emphasises their freedom, a quality admired by humans and perhaps your need for movement goes beyond cartwheels and requires trips further afield.  This kind of journeying could also be less literal, perhaps an inner journey or venturing in seek of knowledge.  Similarly, it may be about moving a paintbrush around more freely or taking a freestyle dance class instead of your usual tap class.

Following winter in africa, swallows head back north in time for spring, associating them with fertility and new life.  As we’ve seen with so many other birds and animals, this also ties them to death and rebirth.  Spring is often considered a time for renewal and this may be a good time to start a new project or come to terms with some kind of loss and move on.

Swallows usually return to the same nests but for younger birds, it is necessary to first find a mate.  Once you’ve got a partner, you then work together to built a nest out of mud mixed with straw.  This team work continues once the chicks are born and led to swallows being held up as icons of fidelity, of marital harmony and devoted parents.

“All the summer long is the swallow a most instructive pattern of unwearied industry and affection; for, from morning to night, while there is a family to be supported, she spends the whole day in skimming close to the ground.”
– Gilbert White, 1789

As well as taking a look at your own relationships, the swallow may be inviting you to think about how you can or do work to have to maintain harmony within them.  Relationships are not easy and, as with the swallow, they work better when all parties are contributing.

It is considered good luck to have these birds living in your home and they have also been used to get rid of bad luck, such as in ancient Greece where women could get rid of bad luck by catching a swallow, dabbing oil on it and then releasing it.  Like many good luck creatures, harming swallows would cause bad luck or misfortune.

“The robin and the red breast,
The martin and the swallow;
If ye touch one o’ their eggs,
Bad luck will surely follow”
– Medieval rhyme

If you killed or harmed a swallow the consequences could include cows going lame, stopping milk production, crops being ruined or deaths in the family.  Other less lucky beliefs include the Irish belief that if a swallow uses your hair to line its nest, you’ll have headaches all summer.  In a part of Scotland, a swallow flying under your arm would leave the arm paralysed.  In parts of England, swallows perching on a church roof in the autumn were said to be decided who would die over the winter.

With that in mind, the fashion industry in the nineteenth century probably had a lot of bad luck as it was popular to wear dresses and hats decorated in feathers and even stuffed birds…  This meant that millions of birds, including swallows, were killed for the clothing industry every year.  It was this trade and wasteful killing that would lead to the creation of what would become the RSPB.  In February 1889 a group of women near Manchester started a campaign against the killing of birds for fashion and worked to change attitudes about birds, encouraging a move from shooting to learning and protecting them.  Definitely ask yourself the impact that beautifying yourself is having on others.  It might be that your clothes are made in sweatshops or your make up is tested on animals and I am by no means perfect when it comes to these things but maybe just make one small decision to make things a little less harmful.

As a sentinel species, swallows are helpful in assessing the effect of pollution and climate change over time.  At Chernobyl, swallows have been affected by the radiation and whilst background levels have declined, the impact on the swallows is still visible in their deformed bills and feet, their bent tails, their abnormal colouring and reduced reproductive success.  What ill-health or situation is the swallow trying to alert you to?  Watch out for warnings in the coming days.

In terms of climate change, swallows are used in phenology, a tracking of seasonal changes through the activity of animals like swallows.  The arrival date of the swallow in the UK in spring and the last date they are seen in autumn are affected by temperature which dictates the availability of insects.  Having said that, I’m sure you’ve heard the saying “one swallow doesn’t make a spring” which dates back to ancient Greece and Aristotle: “To be happy takes a complete lifetime; for one swallow does not make spring, nor does one fine day”.

In many cultures, swallows are seen as good luck tokens but also as being able to predict natural or divine events such as flooding, thunder and lightening.

“When the swallow flieth high,
then the weather’s always dry;
But when she lowly skims the plain
Ere the morrow there’ll be rain.”
– Northumberland rhyme

This belief goes further that just prediction with some people praying to swallows for rain eg in china where throwing stones at swallows was done to get the attention of the gods.  As well as predicting immediate weather, they were thought to predict the season’s weather and where they nested would indicate this.

Able to fly freely around the skies takes them closer to the gods and then, as they return to our houses, we find the divine and the mundane linked.  This led them to be associated with household deities and, in different cultures, they have been asked to bring fertility to the women in the home and to bless marriages and births.  Like with other birds, we also see them as being messengers of gods.

The link with spring, the renewal of life and their devoted parenting connected them with mother and fertility goddesses such as Isis and Ishtar.  In Egypt, where they remained all year, they were associated not with spring but with the sun and sun god Ra.  A particular spell could transform the dead into swallows and in that form they could freely enter the underworld.  This link between swallow and death is seen elsewhere such as in Ukraine where it was said dead children return to their parents as swallows to console them and an Inuit tale that says swallows were once children who are playing at building igloos but using mud not ice.

Dreaming about swallows is a sign of a good marriage and a faithful bride.  This can also be seen in heraldry where a swallow’s nest means that the man of the house won’t be cuckolded.  This association with love was embodied in other traditions such as seeing one swallow foretelling marriage but two being a sign that you’ll remain single.

Although, on the whole, swallows are see in a good light – being faithful and committed partners and parents – their habit of abandoning their nest is seen as fickle and disloyal, and leaving their human flat mates has led to their reputation as false friends.  They’ve also been portrayed as carefree, frivolous and proud.  The latter is captured in one of Aesop’s fables where a raven and swallow are arguing about who is most beautiful.  The raven tells the swallow that her beauty is only seen in spring and can’t withstand the cold of winter whereas the raven’s feathers are able to keep him warm all year round.  The moral being that inner strength is better than surface beauty.  Said raven obviously didn’t realise that the swallow flies for hundreds of miles and so has a lot of inner strength and resilience as well…  For the purposes of oracle cards however, I think this is probably a nudge to look below the surface.

The chattery song of the swallow has meant they’ve been seen as gossips and pratterlers but also as giving good advice.  That said, because of the tendency to being talkative, the swallows advice may not be wanted, don’t go telling other people what to do if they aren’t interested, it’s just annoying!

Turning from religion and folklore to medicine, swallows were thought to be a cure for epilepsy, sight problems, fevers and rabies.  Swallow hearts could improve memory, their blood was used for unwanted hair growth and the ashes of their bill were mixed with myrrh and sprinkled on alcohol to prevent drunkenness – perhaps a medicine that worked by putting the drinker off drinking the alcohol?  Many other remedies can be found but I’d not suggest trying any of them…  On the whole the swallow seems to have been a bit of a cure all… It was also thought that parent swallows medicated their babies with greater celandine, also called swallows herb.  Celandine was, as such, used in eye lotions but also for toothaches and to bring good fortune – I’ll be doing a post on greater celandine soon!

But returning to my point about tattoos, why do all those sailors have swallow tattoos?  Swallows aren’t sea birds after all… well, how astute of you and fear not, I have the answer.  Because they were seen to always return to the same nest, they were seen as able to ensure that the sailors too would return home safely.

I hope you too return to a place, physically and emotionally, where you feel at home.

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.

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!

Another enforced break

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As much as I’m keen to continue with my nature and writing project, my swallowing issues haven’t been resolved so I’m now quite malnourished and incredibly exhausted.  I’m beyond reading anything more than a few lines long and am on a strict regime of trashy tv.

I am really really hoping that the consultants will take some action soon and get me back on artificial feeding but I am not having great experiences with them.  At the last appointment, I saw a different consultant (again) and despite her having my notes in her hand, she made me start all over again which I was not expecting.  I was not prepared for this and was exhausted and emotional and frustrated and therefore missed out vast chunks of my medical history and other relevant info… That appointment ended with acid tablets (which I’d taken before and which made my swallowing worse), some really foul tasting supplement drinks (which I couldn’t swallow) and a referral to the eating disorder team (despite it not being an eating disorder).  Nothing around my actual problem progressed, we were just firefighting…

Anyway, grumble over for now.  My point is there is going to be a break in posts but I hope to be back soonish with more interesting bird info for you!  Regardless of when things pick up I’m going to stick with birds for a bit longer, wrap up whatever calendar month that is and then move onto the sea, possibly marine life and possibly the water itself, still to be decided.

I am also going to do a giveaway of some of the resources I’ve used.  They’ll be ones that I’ve read and don’t think I’ll re-read or dip back into but there are some great books sitting and waiting patiently for new readers.