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!