Peg Replacement

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lisa g

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Has anyone had their peg replaced with a Mickey button. What is the procedure? Is it another out patient procedure? Pros and cons of one type versus the other. I currently have a tube hanging outside my stomach and am considering having mine changed to the button.
 

affected

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Yes, best thing you can do is change to a button.
They will do this the way they did the peg, but replacing the button after that is a snap and your CALS can learn to do it (loads of parents just change Mickey buttons at home as they are really commonly used for many reasons)
It really makes things so much easier!
 

KimT

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Lisa, I looked at the Bulbar support group on FB. All good comments. Here's an example:

I also found comments from PALS who swim. All good.

Screen Shot 2022-12-12 at 3.26.30 PM.png
 

Tomswife

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You could reach out to the Oley Foundation. Feeding tubes is their special focus. They could probably provide advice.
 

Diane H

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How a feeding tube is replaced depends on the type of tube you currently have. If it is a tube with a rubber or plastic "bumper" inside the stomach, it is generally removed and replaced using the same procedure as it was put in with. This means having an endoscopic tube inserted down your throat which is done under light anesthesia. It will not be painful afterward because the same track through the abdomen will be used.

If the tube is held in the stomach with a small balloon, the balloon is simply deflated and the tube slides out. The new tube is put in through the same track. A Mic-Key tube is no different than any other balloon tube, just shorter on the outside.

If you don't know which type of tube you have, a bumper type will have only one or two capped ports to put the formula through. (The second is a medication port but most often medications are put through the feeding port)

A balloon tube will have a third port that doesn't have a cap. A 5 or 10-cc threaded tip syringe is screwed into it to inflate or deflate the balloon. A balloon tube has to be replaced about every six months because stomach acids cause the balloon to deteriorate and the tube falls out easily. The procedure is fast, easy, and painless and can be done by experienced caregivers at home.

A bumper tube needs infrequent changes. Some doctors want it changed every 18 months, others don't change them unless they have leaks or are hopelessly plugged. They can be left in for several years. Because an endoscopy tube needs to be used, light anesthesia is necessary, but the same track through the abdomen is used so it isn't painful afterward.
 
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lisa g

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Thank you Diane for the information. I have a bumper holding my tube in place. I have an appointment with my PCP at the end of the month to get an order to change it out. I'm going to have a different doctor change it out since the one that put it in and I don't see eye to eye. He orginally told me that he would change it to a button after 3 months time with no infections. When I went back to him after 3 months his response was it looks good leave well enough alone. I'll be seeing the surgeon that installed my port for my Radicava infusions. I'm going to have him remove it due to I'm now on oral Radicava. I plan on asking him if he'll do the replacement. He was my first choice to have my peg placed but he was booked when I needed the surgery.
 

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Sounds like a good plan lisa - the dangler is always a bumper one, so getting the button and getting rid of that port will be fantastic.
 

Wilson2009

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Lisa, they may not replace the dangler the way it was placed. My GI doctor removed it the easy way. One. Swift. Pull. It popped right out, the Mic-Key was placed, and its balloon inflated all within a couple of minutes. I only felt pressure when that pulled it out, no pain.
 

lisa g

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I had an appointment with the surgeon that will be removing my port and trading out my peg to a Mickey button. While examining me he stopped and scratched his head. I had already told him about the bad experience I had with the gastro that placed it. He told me for starters the peg was placed on the wrong side and placed low. He asked if I had any problems with it and I told him I had not. He said if I wasn't having issues he would use the same site and not make another hole. Has anyone else experienced their peg being placed on the wrong side?
 

affected

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Lisa was it placed as a peg or rig?
There may have been anatomical reasons for the placement?
 

lisa g

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It was placed as a peg.
 
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