feeding tube

[Worsleybird]

Still unsure whether to have this done or not. Currently waiting for an appointment. I think part of me thinks this is a way if not having the tube for a quick exit or to avoid my family and myself suffering as the disease progresses, also worried about hygiene pneumonia not having visitors after the op due to covid plus communicating with hospital staff due to my reduced speech whilst laid up in bed.

I dont have any swallowing issues and can eat normally but my speech is definitely getting worse. Is it odds on that once your speech goes, your swallowing goes, is their a trajectory in how bulbar MND progresses - i.e. speech throat and then onwards to limbs?

Head versus heart here.

Any comments welcome

[matthew55]

No time line as everyone is different. I had pneumonia in my lungs and didn't even notice. A peg is easier to live with than a nasal gastric tube and simple to maintain. Speech apps on phones or boogie board is how I communicate with hospital staff. Try not to over think things. Stay Strong. 👍🤗😁✌️xx

[Ellie]

Worsleybird A few things:

*IF* you were to get a feeding tube, you decide how it is to be used - meds only, fluids and meds, everything.
You can decide to stop using it at any time.
If you have a tube, you can continue to eat orally, even if you know you may be putting yourself at risk by doing so.

Bottom line is... you are in control and you should not feel forced to get one. xx

[LindaB]

Worsleybird I chatted to my hospice nurse about this subject. We agreed that for now that decision can be on 'hold'....I'm confident in her and that we may have those discussions again in the near future....yes as Ellie rightly says we are in control. 👍🤗

[Ellie]

... also worried about hygiene pneumonia

Not quite sure what you mean by "hygiene pneumonia" 🤔

The hardest thing about the whole feeding tube issue for most of us is the hospital stay...

Usually speech is the first bulbar area to be impaired, then the swallow, but usual is never a given in MNDs. xx

[Suefromwakey]

Worsleybird - that's the trouble I fear - there is no "Normal" here - its a hell of a dilemma this tube business, Albert has decided he defo is not having one and I've never known him change his mind over owt to be honest, he says when the food and beer have gone he's done.

He says its better for me not having to deal with tubes etc etc but what he fails to realise I think is that its not a quick end result so I will have to deal with that, there is no reasoning with this

Sue

[Worsleybird]

Feel exactly the same Sue. Im on Riluzole and it seems every time I have a few G&T's or glasses of wine, and I mean 3 at the most during just one day of the week, my liver stats seem to rise. What do you do, enjoy yourself and be denied Riluzole or be very very good hoping a cure will come along but it wont reverse the damage to motor neurons.

[Mary C]

Worsleybird
I discussed at length the pros and cons of PEG/ RIG with palliative team, respiratory team and dietician.
I decided that if I left it too late my breathing might not be up to the procedure.I also was concerned about how medication would be administered if I didn’t have a PEG and developed swallowing problems.Nutrition was a big factor for me to consider as many of us with MND struggle to maintain weight and I didn’t want want not slip into a malnourished state.
This is a personal decision to make but one from my perspective to be made by weighing up the pros and cons.
So 12 months after diagnosis I had a RIG fitted and for me it was the best decision.I eat what I can orally and on guidance from nutritionist use RIG for supplements, and extra fluids.
In terms of maintenance it’s part of my daily personal care to flush it out , keep it clean etc .
I have read on this site that sometimes people Left it too late and became physically too frail for the procedure .Another person shared that his wife declined the RIG and had to suffer malnutrition.
For me the RIG is in place if and when I want to use it and another tool to keep me comfortable.
I went to Walsgrave hospital ,Coventry and the ward encouraged my husband to stay in with me which was a surprise.It certainly gave me more confidence .
Hope you come up with the right decision for you.
Best wishes
Maryx

[Ellie]

What do you do, enjoy yourself and be denied Riluzole ...

If your liver function tests are that much on the edge, choose enjoyment without a shadow of a doubt - Riluzole is no wonder drug 😘

[Betty May]

Hi Worsleybird

My husband had a feeding tube fitted in May this year. By that time his breathing was compromised too much for them to consider doing a PEG as the risk under anaesthetic was too high, but they went ahead with a RIG which was done under sedation while he was wearing his NIV. He recovered really well from it. For a while he was only getting a flush of water through the tube daily to keep it clear... now he is getting supplements as his appetite is decreased and he has lost weight.

We considered it a necessary evil... the consultant made a point of telling us that it would not slow down the progression of the disease but we felt that it was going to be a key tool in staying as well as possible and keeping energy levels up. MND is such an energy-sapper, even eating can be exhausting so even before the chewing/swallowing abilities are gone the tube is good for supplements and 'poorly' days.

His RIG hasn't been completely straight-forward I must admit - the darn thing has come out twice - but that I gather is quite an unusual experience!

His swallow is beginning to be affected now... we're having to be careful with textures and I'm making sure things are not too dry or have been blended. Just small adjustments at the moment.

Hope you get good information and advice at your appointment. At the end of the day you have to be comfortable with the decision you make and if you decide to go ahead you have to feel ready for it...

All the best

[matthew55]

I'm afraid that's why we can only get palliative care. I'll stick my next out and say a 'cure' is many years away and precious time shouldn't be wasted hoping for one. Acceptance is very hard but totally worth it Just saying. 🤗🤘😁🍺xx

[Ellie]

By that time his breathing was compromised too much for them to consider doing a PEG as the risk under anaesthetic was too high, but they went ahead with a RIG which was done under sedation while he was wearing his NIV.

Just to clarify for any wannabe feeding tubers:

An "anaesthetic" is *not* used in the PEG procedure either, it's done under sedation. The reason the RIG procedure is done for people whose breathing isn't great is so they can use NIV *during* the procedure. In the PEG procedure, an endoscope and the feeding tube are put down the throat, hence using NIV throughout the entire procedure is not possible.

Usually, but not always, sedation is used during the PEG procedure because of the camera and tube going in orally.
Usually, but not always, the RIG procedure is done without sedation.
A local anaesthetic is used for the incision site for both procedures.

Love Ellie.

[matthew55]

The sedation is marvelous.i couldn't remember anything after lying down. 😉😁🤗😍xx

[Ellie]

His RIG hasn't been completely straight-forward I must admit - the darn thing has come out twice - but that I gather is quite an unusual experience!

Betty May Never a dull moment, eh!

Any idea why the tube came out - balloon water level too low, burst balloon, got a hefty tug? xx

[Betty May]

Betty May Never a dull moment, eh!

Any idea why the tube came out - balloon water level too low, burst balloon, got a hefty tug? xx

You're not kidding about never a dull moment lol!

The water balloon was intact both times but completely empty so the water had dispersed. Pretty sure it came out through the valve. But why, we don't know. The first balloon was out of shape when we re-inflated it but no leaks. The stoma is high up on hubby's stomach, just below his diaphram and he coughs a lot, so our best guess is that the balloon gets forced into the track somehow and then water is squeezed out...

The track seems to have an angle or a bend in it too and getting a tube back in is not straight-forward in his case.

We're changing the balloon water weekly now and usually there is still around 4.7/4.8 ml left, though last week there was only 4.1 ml. (I put 5.1 in each time).

We try not to worry about it too much but it's easier said than done! Wish he'd been able to have a PEG as these seem more robust. Thanks for clarifying re the anaesthetic by the way. x