Feeding tube - can a good few years be lived?

[GreensAreGoodForYou]

Just that really - a close relative of mine has cancer and because of complications from that or the chemo/radio (they’re not certain which, the cancer is rectal) he can’t swallow and so has been put on a feeding tube. We have been told a PEG feeding tube could be an option so I’m really after details of what it’s like to live with that. Can you still be active, go out for walks, go travelling abroad, that kind of thing? With the NHS does someone come to the home to check on the PEG system or are you reliant on relatives/going to A&E if there’s an issue?

Would appreciate any insight at all! Thanks so much.

I can't remember all details but my late brother had one when tonsil cancer made it too difficult to swallow. I'm not sure if he was in overnight or had day surgery to fit it. There are routines with keeping it clean and flushing it out but from what he said it was quite straightforward - he was prescribed trays of the nutrient drinks and then I think injected them into his stomach via the PEG tube several times a day.

It was during the lockdown and he was immunosuppressed so didn't venture out but in other circumstances I don't believe it would have stopped him being active. The main tie I think would be keeping to the routine of feeds - and travelling with or sourcing the feeds if away from home (he was getting a pallet of them delivered at a time - I'm not sure how many he was getting though in day).

Sorry if this is all a bit vague but hope it helps

DS3 was PEG fed for a time. He kept his feeding pump in a backpack and could go on walks etc with the feeding tube in place and the pump on. As a child he’d want to run around and play so that was tricky but for adult levels of activity I wouldn’t think it would be an issue.

We went in several holidays with his feeding equipment and the biggest problem was the amount of liquid feed we’d have to carry. DS3 needed about 1 litre a day so approximately 1kg of weight. I believe that airlines will give a bigger baggage allowance for disabled travellers but we tended to only go away for a week at a time and could manage the extra weight within the family allowance. The feed had to be delivered in the UK but not necessarily our home address, so for UK holidays we could change the delivery to our holiday destination. For foreign holidays we had to ensure we requested additional feed in advance.

The community nurses would come and check on the PEG regularly but they also taught us how to care for him day to day. If the PEG comes out (or other emergencies) you can present at A&E and they’ll fix it but quickly I learnt to do it myself. The feeding system is set up for home use and it’s actually quite straightforward once you’re used to it. And the nurses were a phone call away in the early days when I was still learning.

Thanks, that is really useful. It all gets blurry when you try to remember doesn’t it? It’s making me wonder whether I should be making notes on what’s happening/when. Just in case it’s useful later for someone else!

Aah this is so reassuring! Thanks so much. This gives me hope, especially the travel aspect. Thanks!

Many children and young people are peg fed and lead normal lives relative to the condition that needed this being introduced
I've been a paediatric nurse for over 40 years and have looked after lots

If holidays are a particular concern, he or whoever is accompanying him will need to learn how to change/ replace the PEG and fix other common issues. I wouldn’t want to present at a foreign hospital and have to navigate this stuff. In the early days we only holidayed in the UK in case there were issues with the feeding equipment and had to go to A&E at hospitals that didn’t know us. Smaller hospitals didn’t always have a replacement PEG in stock or a doctor who knew how to replace them. It’s simple enough to keep a spare and learn how to change them but not all nurses and doctor me are trained. I also suspect that different countries have different devices so foreign hospitals might not be familiar with the feeding system your relative has.

If he’s using a pump you might need to take a spare with you in case it breaks. We didn’t bother because I knew how to do a feed without the pump so took spare syringes as back up instead.

Also, split the feed between different bags in case a bag is lost. We also took some as carry on luggage (you need a doctors note and proof of prescription as it’s a liquid) so we had at least 48 hours worth in case of loss. Once we did lose several bottles of feed and learnt the hard way that the product he used wasn’t readily available abroad. We were lucky as he was eating and drinking more at that stage, but the second week of that holiday he basically lived on milkshakes and ice cream as he still couldn’t chew!

Agree with this. The PEG feeding didn’t stop DS3 from leading a normal life but all his other issues did!

OP, presumably your relative is quite sick and might have other problems that would make travel difficult.

Dc1 has been peg fed for about 10 years now. Is a young adult. Works full time, has a back pack, for mobilising. You can fit it into your day dc has done everything from bolus feeds to a 24 hour continuous feed.
Not many people even know dc has one in.
A nurse comes to the house to change it every 3 months (although I'm trained as well), speaks to a dietian every 3 months and sees them annually.
Hasn't stopped dc doing anything-swims, plays sports, been on rollercoasters etc.
Has had issues over the years with localised bleeding and overgranulation of skin but nothing major. Had one admission to a and e which was down to a product that had been recalled.
Dc can do own weekly changing of water in peg, flushes and feeds etc.

Speak to peg nurses they are usually full of information. You usually get a private company that the nhs has outsourced too. Dc is currently under Abbott who have a 24 hour helpline, quick delivery service and great advice, we've never felt alone.
It feels frightening but soon becomes very normal. Hope all goes well.

My DD is 17 and has been peg fed since she was 17 months. We haven't done any overseas travelling but that's more because of wider medical issues which I can't face potentially having to deal with in a language other than English!

But, with support from staff for her other needs, she's done everything her peers have done in school - adventure weekends, abseiling, climbing, all the scary stuff!

Probably unlikely that adventure sports are on the agenda for your relative but might be reassuring nonetheless...

My son has been peg fed for the last 5 years and will likely be so for life.

It doesn’t stop him doing anything. He is mainly pump fed overnight so it does impact my sleep but not really his. We travel as normal - cruise is our preference for overseas and it’s much easier to pack without the weight limits and flying!

One of my kiddos is PEG fed, she's on a blended diet so no pump, just syringe it in at meal times. (The days we use the prescribed feed is also the same, just push it down!). Needs a bit more organisation for going out and about but it doesn't stop her climbing/ swimming/ generally being a terror.

I do the changes every 3 months but the community nurse would come and do it if I couldn't for any reason. Top tip is you can get little cotton pads that sit between the stoma and the peg ('tubie pads') that are amazing for stopping granulation tissue.

My son has been completely tube fed since birth. He is now a young adult. It has not stopped him doing anything.

Wow!! Thanks si much everyone. I will relay this info. Yes, he is old (early 80s) but aside from the cancer (and chemo effects) is generally fit. I was looking for exactly this - people’s experiences being positive/functioning so that we can all at least envision a viable future for him. This has given us all a lot of hope! Thanks again.