Patient experience of nasogastric tube

Since the end of 2021 I have experienced a nasogastric tube for 10 days to 2 weeks at home

I’ve proved that caffeine isn’t addictive because I had 10 days last November/December and will have had two weeks this March on a diet of Fortisip fed through the nose. I’m a BIG coffee and tea drinker and don’t seem to have felt any ill effects. 

The ill effects I do have are from the deprivation of enjoyment in life – no early morning cup of coffee, no coffee with friends. No cups of tea. The hot drinks are what I miss most because my food options have been limited to soups and smoothies for a long time. Most people would miss food – the food that is one of the joys of life. Some would miss their wine and beersies. 

I’m not a fan of putting other things down the tube for these short term ng episodes. It would be different if I was on a long term peg tube. When you are on the ng it is easier just to take the Fortisip 6 or 7 times a day. It’s finely calibrated to get the nutrition you need as you heal and is easy to use.

I would describe the experience as pretty damn awful though. When I heard I would have 5 days, then 10 days, then 2 weeks on an ng tube I was horrified. When you’re actually IN the situation it’s bearable but you have to manage it. I get a feeling of fullness from Fortisip and can’t quite handle the 7 bottles a day. I like the 7 times a day though because it makes the time go faster. I have a feed every 2 hours but leave a little bit in each bottle so I don’t overfeed myself. 

I write the times on my whiteboard plus the times for my meds and try to keep busy in between – or do something enjoyable like watching TV or reading. One day I went for very short walks between most of the feeds.

Right now as I come down the strait into my last 2 days on the tube, I’m trying hard to do those things I might not have time to do when I lead a more normal life. Decluttering, taking unused clothes to the clothing bin.

I’m not socialising. It’s too difficult when you are healing from surgery as well as coping with a tube in your nose. Last time I had putty on my lower teeth, this time I had a soggy bandage over the graft until yesterday and it was even more difficult than usual to talk.

I assume most people would want to socialise but I don’t mind being in solitary isolation and connecting with people online. It’s easier. And folk find the tube confronting. People who are tube fed long term have a PEG tube in their stomach which is not visible under clothes but this tube is literally in your face, well, my face.

I saw a young person in a protest crowd on TV proudly wearing a tube which was taped to her face with a butterfly and tucked behind her ear. I don’t seem to be able to make mine look prettier!

I know socialisation is paramount for our mental health and I hate missing out on it but I have to manage this thing as well as I can 

I do go shopping though and yesterday took a long trip into the city in the bus – I’m all right if people can ignore me and if I don’t have to talk.

One aspect of the ng tube is that the syringes can get quite sticky and both times I have not managed to get a good supply of new ones. The first time the district nurse gave me the wrong syringes and I didn’t have the energy to follow it up and this time I forgot to ask for them when I had a hospital check up. If you are going to be on an ng tube for any length of time you need to make sure you have a fresh supply each week. I’ve got muscles on the sides of my hands and arms that I never knew I had. They are not my best muscles. 

Then there is heartburn. I acquired this after a few days and yesterday asked for liquid omeprazole. I couldn’t use my usual omeprazole because the capsules contain granules, not powder. You need to make sure you ask for this beforehand if like many HNC patients you are on this med. 

Last year’s ng tube experience was awful because I got diarrhoea from the Fortisip or antibiotic. It didn’t go away until the ng tube had been out for a couple of days and I had long finished the antibiotic. This time that didn’t happen – maybe because I had Oxynorm for the first few days – I was the opposite. Both times I have managed these as well as I can. Slowing down the feeds, taking a little less but not allowing myself to go hungry or lose weight as I’m healing. 

I feel admiration for the “tubies” who live long term with feeding tubes. These short term periods of deprivation are much easier because you know there is an end in sight. 

An ng tube is not my favourite thing but I was horrified when I saw the raw skin graft yesterday. It has healed well but there is no way I’d allow food or coffee to touch it. Nil by mouth is allowing the graft to heal. As for the tube – I just have to suck it up – not literally! 

PS, I had the tube out on Wednesday and it was a joyous experience. Last time I couldn’t taste properly for a week or two. Apparently the taste buds become less sensitive if they get no exercise but this time it was not so bad.