Peg consultation

[Terry]

Hi Sheila,

They might well recommend that you have a RIG, which is a very similar result but carried out from the outside. You do have a little tube put down through your nose but I hardly felt it, like you I was scared of gagging.

I don't think that a RIG is quite as good as a PEG but they will advise and hopefully listen to your concerns.

If you want to know more than there is a information sheet on the subject and I can sort out a link tomorrow.

Love Terry

[Ellie]

Sheila, you are not being silly - everyone is terrified of something and, no matter how irrational that fear may seem to others, to the person with the fear, it's very, very real.

This will sound odd but, do you think if you watched a video several times of doctors doing a PEG procedure that it would 'desensitise' your fear of having the procedure? This would, in theory at least, lessen your anxiety over the procedure by exposing you to very thing causing your fears. It's maybe something to think about...

And just to stress to you that you will be sedated for a PEG procedure, so you will be asleep and oblivious to any tubes or scopes - you will wake up and everything will be done. You can make the endoscopy team aware of your anxieties.

Anyway, I won't go on about it. I really just want to say please don't think you're silly re your feelings.

Big hugs to you.

Love Ellie.

[Sheila]

Hi Terry,
I did mention the rig to my nurse, but she said there was a alot of mucus involved and didn't seem keen. But I see on here quite a few people have the rig. I think it could help me, seems a better way maybe.
Thanks Terry.
Love Sheila

[Sheila]

Hi Ellie,
I have watched on you tube the peg procedure, it didn't help much. The nurse at the hospital said I would get a throat spray and that's all. She must be wrong because no way I could get through that without sedation.
Thanks again Ellie for your help.
Love Sheila.

[Ellie]

Hi Sheila,

If your breathing is good, the preferred method of fitting a feeding tube is by the PEG procedure, if your breathing isn't great, the RIG procedure is preferable.

In the PEG procedure, patients are given intravenous sedation. This is because they must be relaxed for the endoscope to go down the throat.

In the RIG procedure, patients are not normally sedated, but get a local anaesthetic nasal spray for the tube that goes up the nose and into the stomach, through which air is pumped so the stomach is inflated.

Love Ellie.

[Sheila]

Hi Ellie,
Thanks for explaining all that to me. Now I know the different ways for the peg and rig. I see the breathing nurse on Friday. It was ok last time. But I have noticed a strange breath comes out, usually after sleeping or a nap. Maybe nothing to do with Mnd. But I will mention it.
Thanks again Ellie
Love Sheila

[Catsparkle]

That's good to remember , the sedation.. good luck sheila xx I'm worried about the cut and tube i think, ive still got to get to grips with that. But then i thought people helping me to the loo would be awful,its just normal now.

[Ellie]

Hi Lisa,

I'm worried about the cut and tube

The hole is very small, only about 5-6mm wide.

i thought people helping me to the loo would be awful,its just normal now.

Very true!! It's amazing what becomes "normal" isn't it??

Love Ellie.

[Catsparkle]

Haha, going to the loo has brought me and my ex closer i think..it's the massive pants wot dunnit 😂

[Kayleigh]

Hi Lisa,

I hope everything went well at your consultation yesterday.

Love Kayleigh x

[Devonmaid]

Good to get the PEG in early. Tony is now using it for all meds and lots of fluids and x2 meals a day. He is now on thickened fluid and a pureed diet. He had no real problems post op. Take care

[Catsparkle]

Thankyou x the consultation was pretty horrible actually, a summary of my current and near future frailties including respiratory-although I knew Id been cleared , because I'd had to redo my night oxygen (the finger grip slipped off) she didn't have the respiratory data so had to go through that too. I don't know, I'm diagnosed autistic, so i loved the accurate information but yeah. Waiting on resp to decide peg or rig .

[Kayleigh]

Hi Lisa,

Sorry that the appointment yesterday was unpleasant. I expect you were glad to get lots of hugs from your lovely daughter afterwards!

I hope you have a relaxing and enjoyable weekend.

Love Kayleigh x

[Sheila]

Hi Lisa,
Sorry your appointment didn't go to well. It's one thing after another isn't it. And I hope your cold gets better soon.
Love Sheila.

[Hayls]

My MND started with swallowing and voice and has started to go to my limbs, luckily my breathing is still unaffected, my consultant has referred me to have one fitted ASAP as I’m struggling to drink enough, I wish you lots of luck, I’m looking forward to mine so it’s less of a worry further down the line, I hope it all goes well, big hugs