Feeding tube hacks!

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

Storage

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

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

Medication

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

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

Bits and bobs

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

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

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

Bags and more

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

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

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

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

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

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

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

Please share your own tips and tricks below!

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.