To PEG or not to PEG…

[Tony]

At a meeting with my Specialist Nurse yesterday she raised the question of having a PEG fitted. I have to admit I got upset even thinking about it, not sure why. At the moment I don’t need one. My swallow is fine and I can eat most foods as long as they don’t need much chewing. She pointed out that it is normal to have them fitted before you need them as once your breathing becomes compromised they cannot carry out the procedure.

I know this is a personal decision but I would appreciate any thoughts from those of you who have been through the process on your experience and things I should think about.

Many thanks.

[Hope]

I wanted to delay having a PEG for as long as possible and, in fact, no-one ever mentioned it to me. However, I started to find I have no appetite so have given in and asked for a PEG. It has been a bit of a battle but I have been told that I can now have one although I am not sure how long I have to wait. I can still eat and drink but it is becoming more difficult. My breathing is ok.

A part of me is still reluctant but I know it will benefit me.

[Ellie]

I'm so sorry you were upset, Tony - sometimes the 'get a feeding tube' chat is initiated by a medical profession with the same air of casualness as suggesting that you need a new pair of trousers

You've now been forced to think about the subject so take your time and don't be pressed into making a decision, either privately or publicly, until you feel comfortable doing so (by "publicly", I mean to professionals, not to us) And decisions can be changed.

... She pointed out that it is normal to have them fitted before you need them as once your breathing becomes compromised they cannot carry out the procedure.

Yes, it is true to say that most people who choose to have a feeding tube get one 'early' and the outcomes are generally better for those people who are well, have good energy reserves and who have not lost weight, than it is for people who have a tube fitted in a crisis situation.

As for the claim that the procedure "cannot" be done once breathing is "compromised", well, that's just not true. Plenty of otherwise relatively fit and healthy people with ALS have a feeding tube procedure carried out whilst they use NIV.

Do you have an upcoming SALT appointment by any chance? It would be good to get an up to date opinion on your swallow.

I don't know if you've browsed the MyTube website, if not, it's another good resource - click here for access. xx

[JamesW]

Hi Tony,

I had a RIG fitted only two weeks ago now so if you want to fire some questions my way you are more than welcome.

Yes they do want to do this procedure early for a few reasons. Firstly you need to be able to lie flat on your back and if we have any respiratory symptoms this will become something that gets harder to do. Also they like to have the peg/rig in place before you need it as most people experience gradual swallowing difficulties and initially may use it just to help top up a fairly normal diet. Finally, this is classed as elective surgery and there is a good chance given the pressures currently on the NHS that it may get cancelled a couple of times (mine was supposed to take place originally in December).

The procedure itself is fairly straightforward and personally I would recommend getting it done in advance of you actually needing it, but that is just my opinion.

Take care mate,
James

[Tony]

Thanks for those responses, much appreciated. I’ll look at the information and make a decision. Fortunately I do have some thinking time.

[Zante]

Tony Hi. Its slightly different for me being pls which in theory is slower progression before swallowing is affected, but I have noticed some minor swallowing changes. And the slt just brought up the subject by saying to me " have you had a think about a peg, there is a 2 months wait from referral so probably good to get things moving when you are ready". There was no discussion about the peg and how it worked and pros and cons and how its looked after or anything. It felt rushed.

Tony the decision is yours alone and something only you know what feels the right thing to do. Dont feel rushed or pressured and just take the time to look into it. The link that Ellie gave is a good one and I read and watched everything on there. At the moment I have decided not to go ahead. Its something I am personally struggling with. And whatever you decide to do then you always have the option to change your mind at any point, sorry this isnt very helpful! x

[Jane]

I had a PEG fitted two months ago, as my swallowing was getting gradually worse and I wasn't enjoying eating "sloppy" food so was starting to lose a bit of weight. I thought I would only use the PEG as a back-up to start with, alongside eating normally. However, I ended up being encouraged to try overnight pump feeds immediately, and although that was not what I'd envisaged, I'm really glad I agreed to try it, as I put back the weight I'd lost within two or three weeks, and also no longer felt under pressure to eat food that I wasn't enjoying. Obviously it's different for everyone and the decision whether or not to have a PEG, and when to have it, depends on many things, but I would say it's been a positive experience for me. I was worried about having the actual procedure but I had just the right amount of sedation and was unaware of it happening but wide awake ten minutes later. I had some pain the first couple of days but it wasn't too bad and I haven't had any problems since (touch wood!)

[Piglet]

TonyHi. My husband is in his 5th year with MND. He is able to swallow and chew at present but with a lot of coughing and spluttering. He went to have a feeding tube 2 months ago but it didn’t go ahead due to his stomach being too high. His diaphragm is very weak so his internal organs have moved higher! So unfortunately it can’t be done. I thought he would have been fine and not needed a feeding tube 6 months ago as he was eating fairly well, but the horrible progression said different. So he is now eating mashed up food stuff but it is quite distressing for him and myself to have the discomfort of the spluttering and the occasional aspiration of food particles.
I hope you are able to decide what’s best for you, but that’s why they advise to have one before you need one.xx

[KimB]

Even though it's a personal decision, I will get one when the time comes. It makes life easier for both you and your caregiver(s). It can prevent aspiration and save you a trip to the emergency room.

I had a friend with ALS whom I met at a support meeting. She chose not to have one. I visited her about two months before she passed away and she was suffering. She was using eye gaze software and said she was ready to go and she didn't regret not having the tube.

These decisions are very hard to make, especially when we're still eating and breathing okay.

Most of the people I know with MND are getting or have already had the tube placed. One friend swims every day in her pool. She didn't let the tube get in the way of her being able to exercise or enjoy life. She eats a little by mouth but her meds, hydration, and Vitamix shakes go down her tube. She believes it saves her energy.

Best wishes.

[Claireflo]

Tony as you say it is a personal decision and everyone must make the decision that feels right to them.

My dad (bulbar onset) was very reluctant as he's very squeamish. He ended up leaving it as late as he could but got to the stage that it was exhausting trying to eat and he was choking even on liquidised food. He couldnt get enough calories in and was losing weight.

No-one raised the issue of whether it would be possible to fit the tube until he went in for the op then the issue that Piglet described above was raised. The first doctor couldn't fit dad's tube but thankfully a second doctor did manage it. Within a couple of months of it being fitted he was unable to eat or drink anything and was reliant on the tube. It has given him more time and for that I'm thankful.

He had an infection after the op but it cleared with antibiotics. Other than that he has had no issues or difficulties.

[Zante]

Tony this was in the recent thumbprint magazine. Quite a good site.

https://gastrostomychoice.co.uk/home

[Tony]

Thank you all so much for your comments and sound advice. Especially the shared experiences and the links to other information.

[Jackie R]

Tony, my husband put off having a PEG fitted then started to struggle with eating. By the time he agreed and we had an appointment it was too late; his diaphragm was weak resulting in his stomach and bowel moving. My advice would be to get the tube fitted asap, you won’t have to use it but it will be there just in case.

[Johnny5]

Getting food down the wrong tube is rough. The more the diaphragm weakens, the harder it is to clear your lungs. If you cannot clear the lungs, the threat of pneumonia rises substantially. That is one threat you have to think about.

For the most part, it seems the PEG is mostly safe, but an inconvenience at first. From what I have read, most of us settle in and get used to it in a short amount of time. Even if you can still manage to swallow, the PEG helps to keep up those calories that tend to be passed by because swallowing does become more difficult. No more hacking up whatever went down the wrong tube would seem to make life more comfortable.

Starving is worse than PEG in my opinion. Slowly withering away without nutrition may be ok for some, but once you progress that far, a PEG is not an option anymore. We are all tough, but the need to suffer is senseless. Putting family through that is just as painful for them as it is for us. Nutrition helps your body stay strong. The lack of nutrition does just the opposite. That includes whatever your body is doing to waylay the effects of MND.

IMO; PEG wins the debate. You may not agree, but the truth as I see it is here for all to see.

[Bowler]

Getting food down the wrong tube is rough. The more the diaphragm weakens, the harder it is to clear your lungs. If you cannot clear the lungs, the threat of pneumonia rises substantially. That is one threat you have to think about.


Starving is worse than PEG in my opinion. Slowly withering away without nutrition may be ok for some, but once you progress that far, a PEG is not an option anymore. We are all tough, but the need to suffer is senseless. Putting family through that is just as painful for them as it is for us. Nutrition helps your body stay strong. The lack of nutrition does just the opposite. That includes whatever your body is doing to waylay the effects of MND.

IMO; PEG wins the debate. You may not agree, but the truth as I see it is here for all to see.

Johnny I appreciate it’s your opinion but IMO living with this disease should be about choices without being scared into decisions.

In the case of my Ann she took the decision not to have a peg. The decision was based on facts and her express wish that there should be no intervention to extend her life. Far from being “senseless’ I see it as an unbelievably courageous act. It is true Ann did become weaker but in a strange way I believe that helped her deal with disease.