NG tube - mucous, food, talking bringing it out - advice?

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Hello all

My husband finished his treatment last Friday but was admitted to hospital Tuesday after his clinic appointment as had lost too much weight and was dehydrated. 

They struggled to get the NG in due to the treatment, on the 5th attempt with radiology guidance they managed it. It was then too far in - so all been a bit traumatic for him. 

His mucous is bad and when he coughs, tries to eat, drink or talk he needs to bring up a lot and this morning the NG slipped out 20cm, so back we go to  hospital to have it pushed back in. 

He has been trying to eat bits of custard and drink water and a bit of warm milk- should he stop and just use the NG for the time being? Any advice off NG users welcomed? Worried about losing muscles for swallowing etc..

I have just left a message for our nurse to ask about carbocisteine as recommended by  

Thanks all

  • I would do both. I have a Peg.  He will get more nourishment via the tube. I’d also keep trying to swallow some liquids. That’s the route I took 

  • NicNack - he’s gonna hate it and the NG won’t make it pleasant or easy but you need to get him to persevere with swallowing.

    Swallowing is a function that needs repetition. If you did nothing for 3 months the brain would unlearn the function making it incredibly difficult to relearn and educate the muscles. Take it from me - I am now permanently nil by mouth as a result of losing all swallow function.

    Get onto your local NHS Speech Therapy team and ask to see them. They will provide hubbie with specific exercises to strengthen and educate the muscles that are trying to atrophy. In the meantime, Google or YouTube can provide you with simple exercises to be going on with.

    Ultimately, there is no replacement for eating or drinking so maybe go to the supermarket and buy soft, high fat/sugar stuff. Diet concise people will shout me down but this is short-term pain for a long-term gain. Try stuff like; Custard Pots, Jelly, Rice Pudding, Crème Caramel and so on. As he gets a bit more confident, try adding pieces of sponge or mashed banana.

    He will say he can’t or that it hurts (I did - I was a horrible human being) but it will certainly help in the long run. Obviously, if there’s any risk that he might choke or aspirate then don’t do it - get advice from your oncology team but I reckon they will probably suggest that he try’s to persevere.

    If I’ve recommended anything controversial I am sure that others will pick me up on it.

    If he continues to struggle and loses lots of weight (I lost 6 stone) they might consider a post-treatment RIG or PEG. Many head/neck patients get a PEG/RIG fitted BEFORE treatment because of issues like your hubbie is experiencing. Unfortunately, getting a PEG/RIG fitted after treatment is not great as many are at a very low ebb both physically and emotionally.

    Forgive me - I’m talking brutally from personal experience having had a PEG fitted BEFORE treatment. I now have a RIG, that is fitted from the outside in and doesn’t require endoscopic fitting. Please feel free to ask anything on here, I’ve had a PEG then forced into an NG after having my oesophagus torn (another story) and now have a RIG permanently.

    Here to help. Be kind to yourself - you are living hubbies ordeal as well so make sure that someone is looking after you!

    Best wishes

    Good luck! 

    Reevsey
  • He has been trying to eat bits of custard and drink water and a bit of warm milk- should he stop and just use the NG for the time being? Any advice off NG users welcomed? Worried about losing muscles for swallowing etc..

    As an NG survivor I would say that I hardly noticed it in my throat at all. I suggest he use both until he can’t swallow. I wouldn’t worry about losing the swallow muscles. I have no idea why some speech and language AHPs bang on and on about it. Its just not true. I didn’t swallow anything for 8 weeks but I did my swallow exercises. His throat isn’t going to forget how to swallow. What can happen is that fibrosis can make the muscles scarred and stiff and that can happen years down the line. It’s why I still do my exercises five years later. 
    Reevsey and I disagree completely here. I suspect there are other reasons for his problems. There are lots of people here that were peg fed for months and can still eat orally 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • Hi I like Dani was reliant on my ng tube solely for 6 weeks everything went via the tube nutrition hydration and medication. I kept up with my swallow exercises and to be honest st 6 years I still do them I have never had any issues from not swallowing during the period I couldn’t. The ng tube took the stress away from me. It enabled me to make an excellent recovery and continue living a good life which if you read my blog you’ll see how I’ve progressed. There’s nothing I can’t eat ( apart from spicy ) that’s a taste  not a swallowing issue. We are all different but my thinking was why try to do both when the ng tubes is there for a reason to aid his recovery. 

    I started swallowing soft foods from week 3 recovery but up to that point I had relied solely on my ng tube. 
    Hugs Hazel. 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Nicknack

    Didn't have the NG had the PEG... lost 16kgs during Chemoradio....admitted to hospital for 12 days .....Pump fed through PEG....horrible experience nothing would stay down to start with.... appetite totally disappeared.. .got very low... oncology teams were brilliant....got me sorted...PEG saved me... .no doubt about it.... hydration of swallow is essential.... keep the muscles moving.

    Peter