Has anybody any experience of using a nasogastric feeding tube? My husband sadly is having great difficulty swallowing ...

[annmary]

and the suggestion is that he has one of these - or allow nature to take its course. He cant have a PEG fitted so this his only option. Any comments - good or bad would be helpful as he needs to make the decision - we are obviously unable to decide for him as this wouldn't be right.

[daughter_Julie]

This very issue was being discussed on the radio Wednesday radio 4 around 10.10 am if you wanted to listen again?

[annmary in reply to daughter_Julie]

Many thanks Julie - I will do. We need to make the decision by this afternoon - this morning he said he would have the procedure done - so will keep you posted. So sad to see him at the moment not able to eat and drink along with all the other problems.

[jimandsharynp]

I read an article/post by a woman who had a PEG installed on a loved one then later wanted it removed so the loved one could pass on. Apparently, according to her, it could not be removed. Thus the loved one struggled on for a length of time when she was sure they would have liked to pass on. I think she was in the U.K. though but I'm not sure. Not sure if the same applies in the USA. Perhaps with the proper documents it could be removed. I'd like to know. Wouldn't want one in place if I later decided to have it removed and couldn't. Patients can aspirate and die from their own saliva so what's the point? That decision needs to be made in advance while the patient can communicate I would think. If someone knows about removal please post it.

[Kathy in reply to jimandsharynp]

Someones own saliva is a lot less harmful to them than a lung full of food/drink!

[Kathy]

Hi Annmary,

I guess, by now, the tube has been inserted? I don't have any personal experience with NG tubes but as a physio working on a stroke unit for many years I am very familiar with their use.

Several things need to be considered. They are usually only seen as a fairly short-term measure. They need to be very carefully sited and an x ray should be done before they start feeding to ensure that it is in the stomach and not the lung! They can become displaced quite easily if the patient is restless or confused and likely to pull at it. When being fed through the tube the patient needs to be propped at an angle of no less than 30 degress and should never be "fed" lying flat. If the tube is not "flushed" with water after every feed it can become blocked although I am reliably informed that a syringe full of Cola is great at clearing any blockages!!

I don't know if any of this info is helpful or not but I thought I'd share it with you.

Thinking of both of you and hoping the feeding is a success!!

Love

Kathy

[dllera in reply to Kathy]

Hey Kathy - I never thought of using Cola in the tube for blockages! Sounds like a good little trick to make a note of and pass along to our PSP group!

[Kathy in reply to dllera]

Glad to have been of service!! xxx

[Mars]

My husband Tony was suffering from aspirational pneumonia and had nasogastric tube fitted about 2 months ago but we were told that this could only be on a temporary basis and after 3 weeks went on to have PEG fitted. There was no great problems with the tube although Tony did pull it out a couple of times, not sure if it was annoying or uncomfortable. The doctors did ask Tony if he wished to have these procedures done and he did indicate with a thumbs up sign but I wish we had taken longer to make a decision as he misses food and drink so much and I dont think he fully understood the implications on having the PEG. I do give him a couple of spoonfuls of yoghurt etc and thickened liquid for comfort but we didn't appreciate the fact that saliva can cause problems whether he eats or not.

[annmary]

Dear All

Many thanks for all your helpful replies. My husband has always said no to having the peg fitted, and in any case can't have a general anaesthetic now. Therefore we are going down the route of the NG tube in the hope that it improves his general well being - even if it is only a temporary measure - our daughter is expecting our first grandchild mid-July and it would be wonderful if he were stronger than he is at present. I have been assured that he can have it removed if he doesn't feel it suitable - although best to give it a couple of weeks trial. Hopefully booked for next week, so will let you know how we get on.

All the best to you all Ann

[LizzieF in reply to annmary]

Annmary it doesn't have to be done under a GA. My mum was just going to have the throat spray, sedative and local anaesthetic for her PEG. Unfortunately when they realised she had a large sliding hiatus hernia, the op became more complicated as a result. Therefore they had to give her a GA. Please bear that in mind for your husband. Don't rule it out just yet.

Love and best wishes

LizzieF

[annmary in reply to LizzieF]

Dear Lizzie

Many thanks for your response. I did post this message a long time ago though and very sadly my husband passed away on 24th February 2014. However, I have got to say that he did have a further 20 months with the NG tube in place (it being changed every 4-6 weeks). He was able to see our first grandchild for several months. PSP though is such a horrible illness, I feel now he is at peace, we made the most of what he could do - he loved his sport, seeing the family and going out in his wheelchair when he could - but of course now it such a huge loss and do miss him being here so much.

I do wish your Mum well, and hope that the PEG has made a difference to her life, at least the worry of eating when it is so hard is taken away which is such a huge relief for you all.

Take care Lizzie

Love and best wishes Ann

[sopan]

My father is fitted with Ryles tube-16, since 8 months. it goes from his nose to stomach. tube need to be replaced every 3 weeks. Now he is on complete liquid diet. initially he lost his weight, now his weight is stable.

He need to be fed every 2hours 200ml of feed(8 to 9 feeds a day). The feed is thick enough that it can pass though the tube.

I make sure that he gets the most nutritious diet, higher part of Carbohydrate and Protein. I have also stared Nurilite supplements for him.

Some times he experience bloating and gas and need to take medication to avoid bloating and gas. Please consult your physician.

Please consult your dietitian for the type of feed and supplements.

Also see his nasal area is clean and clear, sometime he may get itching over nose area and tend to pull out the tube. I use to clean it with saline nasal spray and soft tissue.

Hope it helps, please let me know if you need more information on it.

[dllera]

Hi AnnMary, I hope all is going well for you. Did you have the NG fitted? I know I'm late to respond but I guess my question is what does he want to have? If he wants the tube then go for it. My dad was the same way-at first he didn't want one and then changed his mind and we got one (we got a PEG). My dad didn't choose to stop eating - he just had a really tough time doing it. I guess that's the real question that faces us all in the whole feeding tube debate - -someone dilerbately choosing not to eat or just not being able to but wants to. In my father's experience he was just not ready to go yet so the PEG was a good decision for him. Our doctor talked with us that a PEG or any tube really isn't much of a "medical" choice since they are relatively easy and people much sicker than PSP folks get tubes but it is definately a personal one.

I wish all the best to you and your family during this difficult decision - -and I'm sure you'll make the right decision for what's right for your loved one. Hang in there!

Danielle

[sar_74]

Hi AnnMary,

sorry this response is delayed but just wanted to share with you that my dad had a tube and although it was a difficult decision to make at the time, it made his life so much easier and definately less frustrating. He ended up only being able to swallow the things he really loved, so he had the tube whenever he struggled and we only gave him his favorites orally. The doctors advised against it but we ignored it and he never once struggle with a thick chocolate milkshake! It meant he didn't get depressed through not eating and you couldn't beat the feeling you got when he was having something, even if it was just a really small amount, or toward the end we'd wipe it round his mouth just to moisten it and get his taste buds going.

As Danielle's said, this is an extremely personal decision and your and your husband can only do what's right for you like we did with my dad,

Take care and keep strong

Sarah x

[LizzieF]

Hi Annmary

An NG tube was one of the options suggested for my my mum as well as a PEG. After dicussing the pros and cons with various healthcare professionals mum decided against an NG tube as it sounded like too much hassle having to go into hospital for x-rays to check the correct siting, having to use litmus paper to check acidity/alkalinity of fluid from tube to ensure tube hasn't drifted into the lungs, which I was told was very common along with various other problems. Why can't your husband have a PEG fitted? Mum's had to be fitted higher than normal as she has a large, sliding hiatus hernia. A possible solution to this was the option of a Percutaneous Endoscopic Jejunostomy (PEJ). The tube is inserted into the Jejunum (the upper small intestine). Thankfully the surgeon managed to fit a PEG. If at a later date you find he can have a PEG or PEJ fitted, then that can be arranged and the NG tube removed.

Best wishes

LizzieF