PEG feeding

[Oliverwindsor]

Hello, been talking to our nurse who informed us that we need to consider PEG feeding for my wife. She is scared to death! How bad is it really? I’m sure someone out there can give me their experience.

Thanks for your time.

[Yanno]

Hello Oliver. You will find many views about PEGS and they don't suit everyone however for Jackie, it was one of the best things we have done. About 4 years ago Jax completely lost her appetite due to nausea (thankfully now solved) and a PEG was fitted to help her take fluids and nutrition. Since then she has returned to feeding by mouth and we use the PEG for fluids and medication.The process itself is quick and simple, however is a little unpleasant. The whole thing is done under light anaesthetic and so Jackie didn't remember anything about the process at all. Depending on where you are in the country you will then be supported by specialist nurses to help you through the feeding and general maintenance. In Worcestershire we are supported by Nutricia who are absolutely superb.

There are few downsides of having a PEG other than managing some leakage from time to time and Jax has had some infections which have to be managed. The upsides are considerable - being able to take most of her fluids through the PEG has helped considerably in maintaining hydration - Jax never has liked drinking water.

One thing that puts some people off having a PEG is it may necessitate a decision to be made on feeding at the end of the journey which otherwise nature would have made for you.

One final point; Jackie had a PEG - a tube protruding from the stomach - for a number of years - this is fine it's a little inconvenient. More recently she has had a Balloon Button fitted into which a tube is 'plugged' for feeding. This isn't technically a PEG but does the same thing. We would, if given a choice, always go for a Balloon Button.

Feel free to ask any other questions through Reply. Others may have a different view, but ours would always be...don't be afraid, go for it whilst you can as putting the process off can lead you to a stage where a PEG can't be fitted.

Good luck, Take care, Ian

[FredaE in reply to Yanno]

i agree with yanno. Wleft it too late and when he could longer swallow he quite simply starved.

[Diane831]

We had a very good experience of having a PEG fitted. I am convinced that Geoff’s life was enhanced by getting al the medication, hydration and nutrition that he needed without the hours of trying to swallow enough! He did enjoy eating things that he fancied in small amounts and loved chips, Quavers types crisps and beer/wine/whisky off a mouth sponge right until the end!!! We were recommended this website to look at by the dietitian different disease, but the general facts about the tube are the same.

mytube.mymnd.org.uk/

Best wishes

Diane

[Westcott]

I'm so pleased you asked that question! I was talking to a friend yesterday about it. Ì always thought it was a surgery job and I don't believe after several major ops and months and months in ITU that I cld claw my way back to health agàin. If ìts something I'll know nothing about and am unlikely to be hauled off to ìtu for then that's a bìg rèlief.

Whatever you añd yr wife deciďe I do hope it haß a pòsitive ŕèsult for hèr

SUE

[Fatwallet]

My husband Phil has had the RIG ( this is the button balloon in the tummy just as explained by Yanno) At this moment he doesnt need to use it for his feeds but he is getting very tired when feeding and we will then use the tube to top up his nutrients.. he loves his food so will continue to eat, mainly what he loves.. chocolate 😁 for as long as we can. Phil chose to get it fitted now while he is fit enough. You dont want to wait until its too late.. ( he did go for the PEG procedure and was in theatre when they realised it could not be fitted as he had a Hernia in the way.. he is greedy🤣). He has just had this done on the 17th December and all is fine. I am just using it to give him fluids at the mo. If i can just say Phil has said for the past 2 years that he didnt want it. He said the procedure was fine, had worse experience at the dentist!! Please dont put off getting it while fit. You have a choice to use it or not initially. Sending lots of love ..

[Hidden]

Hello I guess you will know your wife's symptoms very well and how her swallowing etc has been in general. I would say go with your gut instinct, as it were 🙂 we found the above video link very helpful and spent a few months agonising over the decision, took advice from everybody we could including consultants from the palliative team. So never feel you're asking too many questions (it's their job 🙂) In the end dad doesn't have one fitted, for many, carefully considered reasons. In general, the progression of the condition for him has been slow and steady and he is still a strong eater and drinker even at quite an advanced stage. But I think that's quite unusual. It sounds like most people do get the PEG. Dad takes blended food/drink/medicines via skin patches or in liquid form via oral syringe feeding (which means depositing it just into his lips and he then moves it to the back of his mouth himself with his muscles, and swallows). He can indicate if he's interested, or if he changes his mind partway, block it with his tongue if he doesn't want it, or let it run out of his mouth again. There's not a lot of literature on this out in the world, but from what there is, we drew up a training plan and risk assessment. Health professionals usually tell you this is not something they can officially recommend because they worry that with careless technique it could spurt into the back of someone's throat and make them cough/aspirate. (We've not had this happen) . I appreciate that some people reading this may well judge us or feel more horrified by this method, than the option of a PEG. I guess it just comes down to what works for the needs of each individual. I think if you can get to a place of feeling acceptance of the likely consequences of the decision down the line, then maybe that's when it's been made. (even though it's likely to be emotionally painful either way). Hope that makes sense. Kx

[writerinlimbo]

Apologies if my answer is too brutal but I think it depends upon how much your wife wants to live. If this is for as long and healthily as possible, have a PEG. While a PEG will not slow the advance of the disease, it will handle the increasing difficulty she will have eating, drinking and taking medications. And she will find that if she leaves it too long, it will not be possible.

As FredaE said, without it her husband starved, as did my husband who also refused one. In his case it was because MSA raged through him so quickly and he did not want to remain locked inside a body that could do nothing for itself but hurt. He did not want to do anything that would prolong this state and refusing a PEG was one of the few controls he had.