Feeding Tube Awareness Week Q & A with Helen

Feeding Tube Awareness Week 2022 runs from 7th till 11th February and is, as the name suggests, a chance to increase awareness around feeding tubes! Helen from the Steering Group has had her feeding tube for a few years now and wanted to use this week as an opportunity to answer questions. Sometimes people have questions that they don’t know if they should ask but in this blog post, all questions are valid! So over to Helen!

A graphic of a feeding tube is next to text that reads: Feeding Tube Awareness Week, February 7-11 2022 www.FeedingTubeAwareness.org

First a bit about me and my feeding tube. I have a PEG tube which I use for liquid feed, water and medication and, before we get onto the questions, I want to make it really clear, I love my feeding tube. My feeding tube saved my life and it means my quality of life today is so much better than it was. One of the things that really frustrates me is when feeding tubes are portrayed as dreadful, as being the end of someone’s life and being restrictive. My feeding tube has been freeing. For me, it’s just another aid that makes my life easier, in that sense, it’s just like my wheelchair.

A feeding tube is used to deliver feed as well as other things such as medication and fluids. There are a few different kinds of feeding tube:

  • An NG (nasogastric) feeding tube is a thin tube that goes in through your nose and down your throat into your stomach.
  • You can also have an NJ (nasojejunal) feeding tube which goes through the nose and down the throat then into the second part of the small bowel (the jejunum).
  • A PEG (percutaneous endoscopic gastrostomy) tube goes into your stomach through an opening made on the outside of your tummy (abdomen).
  • And a JEJ (jejunostomy) tube goes into the jejunum (like the NJ tube) through an opening on your tummy.

Why do people have feeding tubes?

There are so many different reasons but mainly because they’re unable to eat or drink enough to survive, because they can’t swallow medication or, in some cases, it’s a pre-emptive option before undergoing chemotherapy as they know eating will prove more difficult. It could also be because a stroke has made it hard or impossible to swallow food safely.

Does it hurt?

Nope. It did when it was put in because they have to cut through your stomach wall to insert the tube and that of course did hurt. But once healed, there’s been no pain. I sometimes feel a sense of it being there but you don’t have the same nerve endings inside your body as you do on the outside.

How long does it last? Can it fall out?

My particular tube gets replaced every 8 weeks but some last three years. The reason mine gets replaced so often is because it can fall out. It’s held in place with a small balloon on the inside of my tummy and for some reason, I’m prone to the balloon popping. If it does pop, there’s nothing to hold it in place. Mostly though, that’s not a big deal, it just means an unplanned hospital trip. Although you do have to get it sorted speedily as the hole starts to heal up very quickly.

Do you still feel physically hungry or thirsty?

I don’t really feel hungry but I know some people do. Some people, like me, have most of their food through the tube but others mix between eating orally and having feed in the tube.

Sometimes I crave salty food and that’s a sign I need some more salt to regulate my body’s autonomic system (the part of your body that is in charge of automatic stuff like heart rate, blood pressure and breathing).

I do get thirsty, but that’s because I need a lot of fluids (more like 5 litres than most people’s 2 litres).

Can someone with a feeding tube still eat or drink orally?

It depends. Some people have a feeding tube because they can’t eat but they can drink. Others might be able to eat and drink, just not enough so the tube is used to supplement their diet.

Sometimes, a person can’t swallow any food but misses the taste and chooses to chew and spit food out. This gives the taste and texture of eating without endangering themselves.

I can drink fluids that are as thin as water and that don’t contain sugar. I can also eat a small amount a day but am very limited to what kind of food. For example, often people assume I’d have soup, but since it’s a thicker liquid than water, I can’t swallow it. Generally for me, food has to be of a consistent texture and I can do smooth food such as some cheese (which for me has to be lactose free) and some (but not all) tofu*.

*yes, there are different kinds of tofu! They have different textures, some are firmer, some more like a cream cheese type of texture, there’s a whole world of tofu out there for you to explore!

How do you take oral medications, are they still taken orally or do they need to be injected or something else instead?

Some medications are available in liquid form that are thin enough to go through the feeding tube. This is generally the ideal way of taking them if someone can’t swallow. Most of my medications are only available in tablet form. This means my carers have to crush them and add them to some water. This mixture is then pushed into the tube through a syringe.

You do have to be careful about how you take tablets through the feeding tube because they can block the tube, or act differently because they’ve been crushed. For example, slow release tablets lose their outer coating so are no longer slow release.

How do you do things like showers, baths or swimming? Can the area get wet or does the tube need temporarily removing?

The tube and tube site can get wet once they have healed, but I can’t have water or feed going through the tube at the time of shower/bath/swimming. This is because the fluid moves through the tube with the help of an electric pump.

Do you still need to brush your teeth and go to the dentist? I was wondering as the teeth aren’t really being used so won’t be getting dirty.

This is an excellent question. Oral hygiene is still important because you still have saliva in your mouth and tartar build up is still a problem.


I think it’s really important to note that my feeding tube has saved my life, and because of it, I am able to have a far better quality of life.

These are some of the most common questions I’m asked about having a feeding tube. If you have any questions please leave them in the comments.

3 thoughts on “Feeding Tube Awareness Week Q & A with Helen”

  1. Hi Helen
    Thank you so much for these answers – really useful!
    I am writing a book about about awareness days and wanted to include feeding tube awareness week. Can I ask you a few questions? (And please forgive my ignorance!)

    – What are the best and worst thing about having the feeding tube?
    – What foods do you choose when you have small amounts? Do you taste for pleasure?
    – Have you always had a feeding tube?
    – Do you have the tube in at night?
    – Finally, would it be OK to quote some of your answers above in copy? (I will send you the text to review and approve, of course)

    Thank you so much for taking the time to look at this!
    All the best
    Dan

    1. Thanks for asking, my tube is in all the time – as a tube that is placed through the stomach wall as opposed to down the throat, the hole would close up very quickly if I didn’t have it in all the time.

      I got my feeding tube about 4 years ago because I stopped being able to swallow most things. It started with just not being able to swallow tablets and then most foods and certain liquids followed. This meant that by the time I had the feeding tube fitted, I was unable to sustain a good level of nutrition, hydration and was unable to take medication. So for me having the tube was basically a life saver.

      For me the best thing about it is that it gave me my life back – I had no quality of life in the period where I couldn’t really swallow but didn’t have it. It means I no longer worry about getting enough food and drink and I’ve always struggled a bit swallowing tablets so it takes the pressure off that as well. In terms of the worst things… my disability means I can’t lift the feed machine itself so when I’m getting my feed, I can’t move independently – someone has to carry it for me. And because I have my feed on overnight, the whirring of the machine can be frustrating. But these are fairly minor issues compared to how much of a positive difference it makes to my life.

      Food wise, I can manage some kinds of tofu and some lactose free cheese (I’m lactose intolerant!).

      If you can email hello@ydrf.org.uk it’ll reach me regarding reviewing the text, happy to help.

      Helen

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