PEG question

[ltbeauti]

I am just getting tired of trying to keep up my weight. I feel that I spend too much of my day trying to get enough to eat. I have put off a PEG for some time now and have been thinking about getting one in the near future while my FVC is still good.

I have done some research on the forums, but I have few questions

1) Do you have to get a long tube tube first and then switch to a Mic-key button type? Am I right on this ?

2) Can I feed myself, or does someone else have to do it for me? Long tube? Mickey?

Thanks

 

[Steve Dukes]

I got my mic key first. After i had it for about a year, I had a problem that they needed to change out the tube. They did not have one in stock and gave me the long type. I hated it. I have no trouble feeding my self but made a mess with the other. Talked the doctor into another one in two weeks and I sure was happy. You can lock and unlock it with one hand without any spillage. Just keep one finger covering the top as you disconnect it and then put tupe over sink, remove finger and it will all drain into sink with no mess on stomach or clothes.

 

[panguinjen]

Rog feeds himself his formula. He's on a g-tube rather than a peg...it's a long tube that we tape to his body.

Jen

 

[kiwisally]

I can't tell you what the procedure will be for feeding tube placement in VA, sorry.
I had a PEG placed 6 weeks ago. I use it for all my hydration, medication and one or two serves of a supplement like Ensure daily. I take all other food by mouth. It is a huge time saver for me as I am very slow eating and even slower drinking.
In hindsight, I waited too long. I was very dehydrated when I went for the PEG. It took me a full two weeks to get caught up.
I manage the PEG totally by myself. It's quite easy.
I have the "long tube" which was cut to about 6" plus the cap on the end which adds another inch. You can do this yourself if need be.
It's my understanding that it can be switched to a mic-key button after about 2 months. Even if that couldn't be done I would still opt for the PEG anyway.
All the best with your decisions.

 

[chrisroski]

Welcome to our forum, very helpful people here. I too was determined I was not getting a tube in me. As a woman, I was concerned you would see it under my clothes, even though I was losing weight quick. I finally had it done I June, and I feed myself with no pronlem. Since I can't eat or drink regular, liquids go thru and so do my meds. I have the tube, but i tape it and you really cant see it under clothes, and now i really dont care if you can or not. I must say that after I had it done, I started to put weight back on and am maintaining my weight, and people say that I look much better then I did before I had it done. The procedure did not take long. Seriously consider getting it done.

 

[momap53]

You'll need to talk to your surgeon beforehand to see which kind the facility stocks and which he/she is willing to place.

 

[marypat]

peg tube, g tube and j tube are names describing the enteral( thru the stomach) type of feeding tube the difference between these is placement in the stomach/intestine. A mic key is a low profile button on the out side of the stomach. inside they all pretty much look the same or did when i was in the endoscopy lab. the long tube out side the stomach was very easily replaced when needed, i never had much experince with the mic keys at that time tthey were usedd primarly for children. good luck with placement and good job staying ahead of lou

 

[marypat]

oh yeah the reaswon they wait for the button is (usually, all depends on the dr and facility of course) the track in to the stomach needs to form and heal. kinda like pierced ears if that helps

 

[ltbeauti]

Thanks peeps ! I have been around for a while though it still says new member. I go for my 6 month check up at the ALS clinic in October and will start the process then. They were bugging me to get one 2 years ago and I was maintaining my weight ok then, so opted out especially since I am slow progressing.
The clinic is 1-1/2 hours away, and not sure if they want me to get it done up there or near my house. I will email them and let them know of my decision before hand.
I am glad to hear that I can feed myself. I heard somewhere that certain types of feeding tubes you have to have someone else do it.

I also found a lot of info on past threads and on PLM. I have been on there for many years.
I still have a lot of research I want to do on different types and feeding styles.

 

[kiwisally]

I got a question about this....I understand the hole in your stomach. The actual tube going through. Been told that would heal, close pretty fast if the tube were to come out, so I understand that. I understand the hole in the outside, through the skin and muscle (and fat!) and how that would heal like a pierced ear, so I understand that. Here is where it gets a bit foggy. What happens in the in-between space, between the outside of your stomach and the inside of the hole through your outer body? Your stomach isn't held tight enough by pressure to keep a seal to the outside is it? I just don't understand the anatomy well enough. Can anyone explain?

 

[marypat]

kiwi if you meaan when the tubes in place, it is held by a ring or a balloon depending on the dr and the type. if you mean when the tube is removed the stomach heals very fast and usually there isnt too many problems but there is usually an xray or sccope to check it. between the wall of the stomach and the muscle layer a tube trax heals, or as i say usually. and that if the tube is removed just eventually heals together
i am not a dr but this is my knnowledge from the endoscopy lab....ur dr may say different

 

[kiwisally]

TY Marypat. Yes ,I mean when the tube is in place. I understand there is a ring or balloon (depending on type) on the inside and a ring on the outside, with the tube running between. But it's not real tight, there is a little play in that, so your stomach is not held really tight up against the inside wall of your body (?). What keeps gunk, body fluids, goodness knows what from coming out the hole or in reverse, going from the outside in? How loose could the tube system be? Now much play could there be. I haven't seen the gastro again to ask.

 

[panguinjen]

Rog has a really small tube (12guage) directly into his stomach and attached by a stitch outside on his abdomen, about 12 inches from the opening is a connector where the tube can be changed, then there's another 24" of with a two port connector with an on/off stopcock that he connects to a drip bag or syringe. He had 3 buttons near the entry point after surgery that held the stomach wall to the abdomen and they eventually fell off once the skin started forming around the tube.

There is no ring or balloon on his, just the stitch. If he syringes too fast, formula oozes out otherwise there is very little discharge. He washes the area every day and we have gauze squares with a hole on the middle that goes over the opening. We tape that, the connector and the tube to his abdomen...
Jen

 

[kiwisally]

How do you tell what gauge you have, mine says "COOK" which I find highly ironic and Flow20, so is it a 20 gauge, if Roger's is a 12 mine is huge? I changed the 2 port connector, which it came with to a single port one I pinched from the emergency kit they gave me to use if the whole thing accidentally got pulled out. Its that much less weight to deal with on the end of the hose. As I said mine is cut to about 6 or so inches. With the single port on the end I won't go into what it sort of looks like :razz: but I am sure you all know.

 

[panguinjen]

The radiologist told me when we had problems at the beginning because they didn't tell him to stop his pla vix til it healed. We have a couple of connectors because he lost the cap off the auxiliary side just as we were leaving on a trip... It was funny, he came into the house from loading the car and the front of his pants were sopping wet, the liquid and formula was in his socks and shoes... Gross, but funny!

Jen