PEG Advice

[Guest]

I have recently had the PEG procedure at The Royal Hallamshire Hospital, Sheffield. I was in for 4 days and would like say if you are relatively fit, walking etc. is to make it a point as soon as possible post op to get out exercise. Short walks to start along the ward and corridors and try and progress to stairs. Work off the wind and exercise the lower muscles.
I was one of three that had the same procedure on the same day, last on the list and first to be discharged, all the staff and therapist applauded my positive attitude.

[Terry]

Hi Pete;

Good to hear that the opp all went well. Did you have a PEG or a RIG?

I am surprised that they kept you in for 3 or 4 nights, I only spent one night after the opp and that was one night too long.

You are right about getting up and walking moving as soon as possible, IF POSSIBLE but you don't want to be doing sit ups or moving the tummy area a lot for 7 to 10 days and only them if not much pain.

Love Terry

[Guest]

I have had a couple of ops in that area in the past while still serving in the forces, so I knew how to get out about. It is a PEG or as they call it elsewhere a PIGG.

[Ellie]

Glad it went well for you Pete.

Sorry to be pedantic, but a PEG procedure is not the same as a PIG procedure, but both have the end result of a feeding tube.

The "I" in PIG stands for Imaging, meaning the feeding tube is inserted using X-ray imaging.

The "E" in PEG stands for Endoscopic, which is a camera.

A balloon retained device can be fitted during a PIG, but a bumper one is fitted in a PEG procedure.

One is more likely to be given a feeding tube using a RIG or PIG procedure, rather than a PEG, if breathing is an issue.
As if there aren't enough acronyms, a PIG is a hybrid of a PEG & RIG!!!

Ellie.

[JAY TEE]

Pete I had my PEG fitted last June and so far not used it. Still managing to eat and drink. I just mash up my food and so far no problems with my swallowing. So glad I only had one pint watching the rugby this afternoon. Best wishes John

[Jer780]

Guys I am new to this and was only diagnosed in November. How soon do you require one of these things and what do they do? This whole thing terrifies me. I have had Stemcell treatment with no significant improvements but have been taking cannabis oil and feel 100% better for doing so. Any advice tips are greatly received. Jerry

[Barry52]

Hi Jerry,

Your consultant is best placed to advise on peg feeding and they generally suggest sooner when your body is stronger. Some of us have problems swallowing and the feeding tube ensures you get enough nutrients. Not everyone elects to choose this option and you can sustain nutrition with liquid supplements.

I won’t comment on stem cell treatment as that’s a can of worms that has been raised before on this forum. If you search under the subject matter you will find more information.

It would be interesting to know where you reside.

Best wishes,
Barry

[Dude]

Jerry I was offered a feeding tube two weeks after diagnosis, very tactful lol. It depends on a few factors. I still have a good swallow and have Ensure protein shakes. 69, diagnosed 2008. don't worry about it. Dude x

[Ellie]

Jerry,

A feeding tube is a way to ensure you can get enough calories and fluids into you, as well as meds, if your swallow is compromised.

If you're lucky enough to have a relatively strong and safe swallow, you don't need to use a tube, but if your swallow weakens (as happens in the vast majority of those with ALS, unfortunately) causing coughing, choking and aspiration, you can decide whether or not to use a feeding tube.

Ellie x.

[Guest]

Hi Jerry, I was diagnosed in October and I have progressive bulbar palsy (PBP) as my main initial symptoms. So swallowing and speach are very difficult and are getting progressively worse. I am still eating and drinking the majhority of things, but the decision on the PEG was as some have mentioned a precaution, and better done while am fit and active, as if left too late when I can't swallow it may not be possible. IU have had it 3 weeks now and don't notice it during a normal day, just the daily flush with water morning and night. There for when I will need it. Best regards, Pete

[Terry]

Hi Jerry;

Sorry to hear that the "Stemcell" treatment had no affect. Where did you have it done and what was involved?

I have know of others that had similar a outcome. Normally the extra physio and alternative therapy received whilst staying there for around 10 days makes a difference.

Love Terry

[Jer780]

Thanks Dude

[Jer780]

Hi Jerry;

Sorry to hear that the "Stemcell" treatment had no affect. Where did you have it done and what was involved?

I have know of others that had similar a outcome. Normally the extra physio and alternative therapy received whilst staying there for around 10 days makes a difference.

Love Terry

Hi Terry, I'm working in Bangkok so received it here to the tune of 60 million stemcells. I didn't receive any therapy as really I only had drop foot and atrophy in my left arm. I found it a bit of a con really as you say its a 10 day treatment and maybe its a time thing but I was in and out in 30 minutes. I was given an intial test where I held an object connected to a diagnostic machine which told me I had half a dozen things wrong possibly so they could say I've been cured when I go back in 3 months. Nothing positive just yet but we'll see.
Regards Jerry

[Jer780]

Thanks Pete

[Jer780]

Thanks Barry. The jury is still out as far as I am concerned regarding stemcell. It is quite expensive and they informed me 3-6 months before I see a change so something needs to kick in soon.
Regards Jerry