Mum just had one fitted and really uncomfortable. Can anyone share their experience of this please x
Nose tube for feeding: Mum just had one... - PSP Association
Nose tube for feeding
Written by
Sarah1972
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43 Replies
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My wife has had an NG tube for more than two years and it has not appeared to be uncomfortable. It is second best to a peg feed but I feel it helps saliva drain from the mouth to the stomach. So long as she is sat upright choking episodes are very rare. The tube is changed yearly at the local hospital and takes less than ten minutes.
My son, 55 years old, while in the hospital for aspiration pneumonia (March, 2017)....attempts were made to put one in. It failed miserably. He was too uncomfortable. He opted for a PEG. He died May 4, 2017.
Kenh1 has shared a much more successful experience.
Blessings
Hi some reading I did a while back said that they are good in an acute situation, but they are not suitable for longer term use because of discomfort. My reading of material said that generally moving to a PEG is recommended for longer term use.
However I have read kenh1's post and am not so sure...
Best to discuss with the treating team.
Best
Kevin
I need to add that I did ask why we were not offered a peg and was advised that fitting a peg required an operation and as we have a DNR they were not prepared to take the risk even though it is only a minor op.
Hi Kenh1
Thanks for explaining that. We may very be in the same decision boat one day.
I'm glad she's comfortable with it.
This whole risk culture is really quite bizarre at times. As someone who has spent a lot of their life doing higher risk sports it leaves me quite befuddled. Common sense seems not to have much place now.
I hope you are both doing OK
Even though the old bag has a DNR the peg was still fitted. They had to call me into the theatre as she would not open her mouth for them. I believe it is now an even quicker fitting system.
Javan
I think I get the 'old bag' bit of your post... had to read your profile to get a handle on it.
"Love, discussing everything, and sarcasm, works for us. "
Sounds like you've had a rough time of it.
Wishing you both the best.
Cheers
Kevin
Sarah, may I ask how your dad is? I was struck at the time you posted about his tremors and shuffling and I read where he's been in and out of hospital this year.. So hard to worry about 2 parents!....
Anne G.
Hi Anne, dad still isn’t right thank you for asking. It turned out to be a water infection in the end so that was fortunate. However he hasn’t been right since. I fear he has depression or even onset of dementia as he just isn’t the same. So difficult though as he is constantly repeating himself and doesn’t seem to understand mums PSP. Just keeps asking why she can’t get rid of her cough, I’ve tried explaining about the tube mum is having fitted at the moment to feed her but he just doesn’t get it. It’s all very tiring as he is rude when we go out, says what he thinks and trust me Anne, that really isn’t a good thing.
Thank you for your concern I hope you are well xx
I'm good enough Sarah...Wish I could offer you something healing/relieving for your two dear folks - but will just have to be a long-distance hug 
XXX
Anne
Hugs are wonderful things so take one for you 🤗 xxx
Dad had a NG tube for a bit after a surgery. It was to empty the stomach not for feeding as it was a bowel issue. He never really complained about it but he was on a regular dose of pain meds too.
Ron
Thanks Ron. They’re having real difficulties getting it in. The first attempt it just kept getting blocked so used other nostril, this one would only go so far. Sent mum for X-ray to ensure it was in enough but it didn’t show up (turned out the wire had come out so had to try again. 3rd time it’s in but again is a blockage so waiting once again for an X-ray. It was so painful for her. I’m just wondering if it’s a common problem with PSP?
Swallowing in general is a common problem with PSP/CBD. Even if the point of entry is the nasal passage it HAS to pass through the throat eventually. May be it's the swallowing reflex or lack thereof that's causing the problem.
Ron
I had to have A NG tube myself a few years ago when my own health was very poor. I hated it & told them to remove it or I would pull it out. Trying to get it in place was also awful.
I hope they manage to sort it out. Is your Mum unable to swallow now so why she needs feeding?
Yes they have said eating is no longer safe but will review in a few days. Really feel for her as had the tube in all night waiting for X-ray then accidentally pulled it out this morning so now will have to go again for a 3rd time 
I don’t think there is any other option xx
Do you have hospice involvement? If you do I'd ask for their opinion on this or the palliative care team in the hospital.
Bless your Mum not an easy time at all for you.
X
No to the hospice involvement. Trying to find some info on the tube and PSP. They keep telling her to swallow whilst putting it down only the reason she is having it is because she can’t swallow 🙄 grrrr so frustrating xx
Yeah not helpful if she can't swallow easily.
Ring the PSPA helpline they are normally quite good and giving advice.
Is your Mum able to communicate if she wants the tube in or not?
Yes but the other option given to her was to choke on food and drink and get pneumonia. She is really scared bless her xx
I bet she is. I saw your other post re PEG. A hard decision to make and very personal. I think there will always be mixed experiences on it. The hospice advised us recently that they though artificial feeding Of any kind would be too traumatic for Mum as she is too weak. We haven't had to make that decision yet though as she has perked up a bit with medication changes.
You will both make the right decision for your Mum.
This is not really a reply to your post and I apologize for that but the sytem does not allow me to start a conversation! I do not know why. May be my point will still be of interest to some and may be some members will help me.
My topic: Mucositis extractor.
My message: My wife suffers from a slow evolving form of PSP with the first symptoms dating now of 12 years! Among many other problems, she has great difficulty to sleep because of an excess of material in her respiratory system. I just got through this "Mucositis Extractor" in a french article and was wondering if anyone had been using this type of device for this type of problem.
Thanks again and sorry for "polluting" your topic.
Hi dalaet
There is quite a lot of knowledge here about these sorts of devices.
Sorry - I am one of the ones who 'don't' know.
The forum technology has bad days from time to time. I just come back later when it's working again.
If it still won't work you can call the Health Unlocked Customer Services Team... They're helpful.
Good luck.
Kevin
My husband is nil by mouth and has a peg fitted. This is a tube that goes directly into his stomach. He says he cannot feel it. Perhaps you should ask your specialist about this. Good luck.
My wife has had a J Tube for about a year, took a minor surgical procedure (tube extends from the stomach). She has inadvertently pulled it out a couple of times, but other than that, has worked well, no pain, infection or discomfort. My understanding is that the NG is only for temporary purposes.
Dear Sarah
I am sorry that this is a late reply. My husband had this fitted so many times during hospital stays and he hated it so much that he removed it each time.
It was heart breaking seeing him suffe with the tube and we felt enough was enough. Sadly he didn't want a PEG as that involved an anaesthetic which would only exacerbate his PSP. it is so hard to watch someone you love suffering so much.
Sadly I lost Les last November and I struggle to deal with losing him so much. I am constantly asking myself if I could have done anything, no matter how small, to help him.
My heart goes out to you and I wish you all the best with your mum's care.
Pat
After 5 attempts 3 blockages and twice to the lungs (very traumatic for mum) I have requested they leave her for today. This means her getting tired as not had food since breakfast yesterday. The consultant told us this morning that she will be fitted with a peg but will take 3-5 days however I asked about going private to prevent any more attempts on the nasal tube and they can’t say if it would be any quicker but they are going to try pushing it through quicker.
They also told us that they would treat any infections but won’t resuscitate or assist if in a coma. Very sad day and happening a lot sooner than expected x
Dear Sarah
So sorry to hear how traumatic this all is for you both
Hope the CHC funding meeting as I recall today goes OK
Take care of yourself
Love and hugs
Tippy
The meeting has been cancelled as mum really poorly. Can’t believe how well she was on Saturday and since the fall Sunday she is now so week, voice practically non existent and very confused. She hasn’t eaten for 3 days and they have now tried the nasal tube 7 times and decided there is a blockage. I am so scared for her as usually I can reassure her but not sure if I can anymore xxx
If they are having that much trouble, ask if a TPN, nutrition put straight into an artery, is a temporary solution so she doesn't get too weak. Dad had it done for a few days when he couldn't eat anything via the stomach (bowel blockage).
Wishing you the best.
Ron
Thank you Ron that’s really useful x
Have it taken out and replaced with a PEG ASAP.
The one they put in but were not confident with, (only went in 40cm instead of 55)mum pulled out. They have had 2 more attempts this morning and decided there is a blockage. Waiting for the consultant to come round xx
This is extremely uncomfortable for your mum.
Please do not subject your mum to more torture.
Be assertive and just say no. No one cares about your mum than you.
To others, she's just another patient. They have become numb. It's the job.
Thank you Sam and it’s noted. I was not going to allow them after yesterday but the nurse was so convinced she could do it and very concerned at mums presentation I agreed. I’m pinning my hopes on getting an answer from consultant today. I did ask to go private in hope PEG could be done quicker but they said it wouldn’t be however they were going to make an urgent request for her to have it sooner. My main worry is that she may now be to weak. Xx
Please ask your mum what she wants.
It must be her choice.
This is about her.
She is to confused at the moment. Thinks she is at home and wanting to go in the kitchen and wants dad to come in from the garden.
She never knew the severity of her illness and didn’t want to know. I know she was in good health Saturday but this has knocked her for six. When we first came in the hospital discussed a DNR with her and she refused. Therefore if she continues how she is I will stick with her wish. I just don’t want her to end up in bed with no life if things get worse. I need to think of questions to ask when consultant comes round. I may start a new blog as feel I need all the help I can get at the moment and need to be fully armed. Thank you Sam, your input is much needed xx
The consultants will give you more info.
Just keep in mind that the quality of life matters.
What you want for your mum first and foremost is to keep her pain free, as comfortable as can be, and to allow her to go with dignity when the time comes. She will know when she's ready to go, and when that time comes, just let her; it's her right.
When it's too much to bear and she can no longer fight, then she needs to rest in peace. That will be her decision, so let her make it.
If she's very sick and weak, than DNR should be discussed with her physician. Nobody wants their mum to die, but nobody wants to see their mum endure even more suffering.
Remember: Quality of life and Dignity.
Good Luck !!
I hope I didn't sound too harsh or apathetic.
I just want what's best for our mums cause they're the ones who are suffering. And as much as we empathise with them, we cannot feel their pain. In the end, it's their journey and not ours, and they decide when and how it is going to end. We all have our own journey in life, and we will get to decide if we are lucky enough.
But for now, this is your mum's journey. The question is, if you know her very well, you would probably know what she would want.
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