Ng tube

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Hello all, 

Just wondering what's the average length of time to have an ng tube in place, please ?  Had mine fitted on 9th July as I was struggling to eat and losing weight after surgery and 30 sessions of radiotherapy, which finished on 2nd July.  Was admitted to Clatterbridge for 8 days (such a fantastic hospital !) and trained to use pump before being discharged.  

It's been over a month now and despite having zero appetite, on the advice of the dieticians, I've been experimenting with trying different little bits of food (would you believe slow roasted peppers, leeks and onions were the easiest and tastiest Joy). However, I still can't  manage more than a few mouthfuls of anything. It's not because of pain, my swallow is fine - it's just that everything seems to stick in my mouth and the quagmire of gunk in the back of my throat.  I'm drinking lots of water, but the dry mouth and mucus is just horrible and I'm wondering when thing will improve. I've been told to try custard, jelly, Ready Brek, etc., which I have, but it just turns my stomach, so I'm still very much reliant on the feed pump.

I know this sounds dramatic, but at the moment, I can't imagine ever enjoying a meal again ! 

Would be so interested to hear your stories ☻ 

  • I vomited up my second feeding tube so had no choice. I was so comfortable with overnight feeding by pump and combined with no appetite I could have gone on longer but I was forced into eating. Small sips of a warm drink to get food down works to overcome the gunk. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Thanks for your reply. I feel as if I could go on forever like this too, Dani, but I'm feeding during the day so it's rather restricting (was told I had to sleep sitting up if I wanted to use the pump at night). Think I need to start forcing myself too, but it's difficult having no interest in food at all. 

  • Be brave. If you can actually swallow pull the tube out Wink

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Ooooh I'm not that brave ! Joy 

  • When my husband had his removed, that's exactly what they did ... took 5 seconds to remove and he said it just felt a bit weird lol.

  • When my husband had his removed, that's exactly what they did ... took 5 seconds to remove and he said it just felt a bit weird lol.

    Yes. Having thrown mine up I had to watch it disappear into my mouth and then up through the nose. Joy Best thing though. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi I pulled mine out with the approval of my cns week 3 of recovery. I could orally sip the ensures so started with 6 of those a days gradually replacing with soft foods poached eggs on top of roast veg always had warm herbal tea to help everythjng go down. There’s no right or wrong way just what’s right for you. I had my ng tube from end of week 3 treatment had it changed end of treatment then was due for another change so I took decision I could eat sufficient. I also dipped custard creams into coffee  trifles custards gave extra calories. Smoothies with extra calories using nut butters etc. well buttered cheese on toast cheap nasty white bread was easier than my home made breads.  It does improve. As for appetite I had none  but took attitude food was fuel. I aimed for 2500 calories every day including 85 g of protein and 2-3litres of water. Took15 month for weight too go back on but I winged weight.i totall lost around d 10 llb. 

    Hazel,x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • I had a PEG feeding tube and pump, used it for a few months, 6 or so, it was removed when I became no longer reliant on it to keep my weight stable.

    I was the same as you enjoyment of food seemed to be doomed, I now enjoy most things, curries, some pies, fish and chips. fry-ups, life does get better.

    Micky

  • Thanks, Mickey. That's given me some hope !