PEG reassurance please.

[WheelsOfSteel]

Although I can still quite happily throw pies and beer down my throat, I have noticed that my breathing is becoming more limited - so my medical people have suggested I get my PEG done.
This is apparently because breathing is the limiting factor, and if you can't lie on your back and breathe on your own they can't do the procedure "the easy way".
I see their point, but it just seems strange that I will be left with a tube sticking out of my abdomen for the rest of my life when eating normally isn't a problem (yet).
Will someone please tell me to stop being a big girl's blouse and just let the medics get on with it, and it's the sensible thing to do, and it will be fine, and it is easy to live with (or not as the case may be).

[WheelsOfSteel]

Update
As soon as I had finished typing the above post - the Endoscopy Unit rang.
I'm booked in for 9th August

[Tabbycat]

You have perfectly articulated my thoughts.

I think you are doing the right thing. If you don't have it done and then need it, it will be very stressful at that point and you risk reduced nutritional intake until the procedure can be completed.

I've just had this conversation with Gastro Cons. My swallow is OK and breathing so far is OK, my difficulty is getting the food up to my mouth, my arms fatigue very quickly.

[Ellie]

I am a huge fan of feeding tubes. I am a huge fan of getting one placed 'early'.

I am not a huge fan of people feeling press ganged into getting a feeding tube, particularly without full and proper info.

So, take your time and have a think about it over the next few days Eddie. (Don't cancel the August appt)

For your consideration:

This is apparently because breathing is the limiting factor, and if you can't lie on your back and breathe on your own they can't do the procedure "the easy way".

That's a bit of scare mongering tbh Eddie. The RIG procedure, which can be done with the person using NIV, is hardly difficult by any stretch of the imagination - some hospitals have prefer to place a feeding tube using the RIG procedure, others prefer the PEG. procedure. It's my theory that "the easy way" means easier for the hospital, not easier for you ...

I will be left with a tube sticking out of my abdomen for the rest of my life when eating normally isn't a problem (yet).

I had a PEG procedure, in which a standard long feeding tube was placed. 3 months later when the stoma tract was fully formed, the tube was replaced with a low-profile button:

MicKey button.jpg

[Bowler]

I've just had this conversation with Gastro Cons. My swallow is OK and breathing so far is OK, my difficulty is getting the food up to my mouth, my arms fatigue very quickly.

Tabby, has anyone mentioned using a neater eater. Ann used one for the exact reason you mentioned. It made a huge difference and allowed independent eating for a lot longer. We were told the nhs wouldn’t fund but the MNDA did provide around £1.1k funding. I think we had to put just over £100 in ourselves. There are various types depending on requirements. Your OT is the one to talk to.

[Zante]

I am in the same situation in that the mnd nurse has asked me to think about having the peg procedure done even though my swallowing is fine apart from stringy foods like cabbage spinach spaghetti etc.... dont think missing out on cabbage is a hardship! Am also the same thoughts on not wanting it yet!. Will be keeping reading any of your updates on the subject. Neat button Ellie! Xx

[Tabbycat]

Tabby, has anyone mentioned using a neater eater. Ann used one for the exact reason you mentioned. It made a huge difference and allowed independent eating for a lot longer. We were told the nhs wouldn’t fund but the MNDA did provide around £1.1k funding. I think we had to put just over £100 in ourselves. There are various types depending on requirements. Your OT is the one to talk to.

Thank you yes, I am familiar with a Neater Eater and would consider this as an option and good to be reminded of the funding available 😊

[TinyLady]

The PEG issue came up again for me recently. I do have swallowing issues that are getting worse. Back in February I was asked to have a PEG on the routine list (ie within a month or two) but I declined as I would feel more dependent on care and health support that I don't have. I said I needed more time.

But then recently when I had my failed visit to the MND nurse and saw the neurologist (who doesn't seem to believe I have MND), he said I am nowhere near needing a PEG and it won't be done until I can't swallow or maintain my weight at all.

All if which felt quite confusing and frankly a bit dismissive. I did think I should be seriously considering it now, especially given my swallowing issues and risk of aspirating and choking....

So I'm interested to read opinions too...

[shelly21]

TinyLady I totally disagree with your consultant. When you start chocking and coughing even mildy , then aspiration can happen. This leads to chest infections.

I had mine in early (last sept) I know am getting ready to use my peg for nutrition as I'm finding eating and swallowing very tiring.

[TinyLady]

shelly21 well, something is not good with my breathing and I have chest pain... there is thought I may have a chest infection from aspirating some food last week. I'm not sure but Leicester respiratory team are coming to check tomorrow. Hopefully a false alarm.

I don't claim that consultant as mine. He barely spoke to me and when I suggested I needed to see the MND nurse really, he just said my husband and I needed the psychologist as I wasn't coping. No I need health care....

I find eating and swallowing exhausting too and I have no appetite so can barely be bothered without nagging. I lost 20% of my weight and drink "altrajuce" to bump up my calories. No idea if I am maintaining my weight because I can't step on the scales any more!

[Piglet]

My husband has just been referred for assessment at Aintree gastrology department for possible RIG.(his breathing is problematic and uses NIV at night) He is quite frail now, and up till now has said no to a feeding tube. He is now having some problem with chewing, he gets very tired eating, so food is now blended, his swallowing is ok at present with the occasional blip. He has now agreed to a feeding tube, if they feel he is strong enough. So my advice is have one when you are relatively well xx

[shelly21]

TinyLady your gp can refer you for peg. But maybe respiratory need to give the go ahead re breathing x.

[Claireflo]

My dad has bulbar onset so his eating was affected early.
He was not keen on a PEG but accepted he would need it. After 14 months of the condition (5 months of diagnosis) he was on very thinly pureed food and said he wanted the PEG as eating/drinking was exhausting and he was choking with every meal. He had to wait 6 weeks to see the consultant to go on the list, then 3 weeks for the procedure.

We're both very squeamish so I can't say either of us were looking forward to it! We were told it was hard to place it as it was left late, a second doctor thankfully managed it. We were told they would give Dad something to chill him out but he says they didn't so it wasn't very pleasant at the time. He also got an infection so was unwell for the best part of 2 weeks (which was right in the lead up to Christmas and when my brother and his family were visiting from America so not ideal but we couldn't have left it later).

So it's fair to say it wasn't quite as simple as we'd hoped but I have to say it has worked brilliantly. We were both trained in using it (which I was allowed to video) and dad has been able to use it independently since (I did it originally when he had the infection but he has good hand function so manages it day to day).

If he hadn't had it done I doubt he would have made it past March (COVID and mucus issues made oral intake impossible). So I am a firm supporter of a PEG. He also has all his medication in liquid format for the PEG.

I would suggest having it early so its there when you need it and making sure there is support afterwards as it is still an operation and just in case of an infection. I stayed with Dad for 2 weeks, although by the end of it I was getting under his feet 🤣

If possible I would suggest staying longer in hospital for monitoring of any infection. They encouraged dad out after 24 hrs (and he wanted to be back in his bed) but I was calling the doctor 36 hrs later due to an infection and had he been in hospital 72 hours as they'd originally said they would have picked it up.

Dad has a tube that effectively dangles (he was shown a few ways to clip it up but prefers not to) and it is barely noticeable.

I know it is a big adjustment but it has worked brilliantly for Dad and it has given him more time.

Sorry for the long reply!

[Zante]

Really useful information for anyone who is pondering the procedure. Xx

[Ellie]

An MND-specific, feeding tube website is myTube and covers the 'No, I don't want a tube' option, as well as ever aspect of getting and having a tube - worth a browse or bookmarking for future reading. xx