To Peg or not To Peg

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Shane the Pain

Active member
Joined
Jul 12, 2008
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96
Diagnosis
05/2007
Country
US
State
CA
City
San Diego
Dear ALS Friends,

I am getting to the point where swallowing is a problem. I would appreciate advice on what kind of peg is best for ALS patients.

And I would like to know pros and cons...

Thank you from your friend,
Shane
 
Most people start out with the long one. Is it easier than the others , dont know.

Either way , getting a PEG now is a good decision.

Glen
 
My suggestion would be to do it inpatient rather than outpatient if you have a choice
 
Shane ... my first was a long tube (15"?) with a moveable clamp in the middle, which made it fairly easy to handle and easy to hide under clothing. (I tucked it under my bra strap. Guys need a different technique.) Because of its length, I was able to eat sitting up ... I could hold the syringe higher than my stomach and the contents would flow easily.

I'm still using gravity feeding, not a plunger, and using supplements and other liquids, so flow is important to me.

My replacement one is shorter (6 inches), and I have to eat reclining (head and shoulders propped up). Also, it's visible under clothing, although I could probably tape it down, but it would still bulge a little.

There is a difference also in what kind of internal device is used to hold it in place. My first one had a flat little mushroom cap that opened like a molly bolt when he inserted it. The new one has a balloon, with an exterior disk around the opening to protect the balloorn. The first one was very clean ... no oozing to speak of. The current one oozes under the disk, and is usually a little damp. It could be because the opening was expanded a little when he pulled out the molly bolt (a quick ouch, not bad). But talk to the doc and get a professional's opinion.

It may be up to your doctor. We had a pre-op meeting with the surgeon, so if you do, too, you can ask him/her what will be used.

Good luck. You're smart to get it early.
 
Hi Shane..

My mom just had her first tube replaced and she stayed with a longer tube ( about 8"). Like Beth's, it has the rubber round stopper that sits on her skin at the incision point. She does not have the Mic-Key button. The longer tube with the regular stopper seems to work better and is easier to hook up to the gravity feed line.

Hope this helps. Procedure was really simple and she said with little pain.

Mellissa
 
Hi Ya'll,

Thanks for the info, much appreciated !

HAPPY NEW YEAR !

Shane
 
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