Hi, Just when you think you have control over at least one thing, guess what.Murphys law I guess. I have had my PEG for more than 2 years, I use it off and on because of reconstruction surgerys. I just quit using it for any food at all a week ago but before I did I noticed when I rolled to the side liquid drained out of the hole where the tube was. The next day I had a fast flush going through and I rolled to my side to get something and the water was pouring out of the hole, when I went flat again it was OK. I cannot figure out if the hole has streched out too big since I was just using it for total body supply, has it been in too long? Would they move it to another location? I have to have it because I am having more plastic surgery and it is coming up soon. I have to have the tube changed next week, they like me to come in and get a new tube every 3 months because stomach acids work on it etc. I guess i will have to tell them . Any ideas what they can do? There are people who live out their whole lives on a PEG tube, anyone know what they do if it gets this loose.This is ME not the PEG, I have pulled them out, they have fallen out, I can tell when it is not right , this one is still anchored well, its the hole in me that is the problem.

Hi,

Heather also has started having the same trouble with her tube. We are also wondering what is going on. We see the doc who put it in this Thurs. Hope to get some answers. Will share any useful information. Good luck with yours.

Rosie

Long term PEG use has it's own set of issues. One is the permanent healing of the access hole as an opening. After many years of having the opening proped open by the tube, sacr tissue forms around it and an new layer of epithelial cells is layed down. This of course prevents the two sides from healing together after the tube is taken out. I have seen this correcfted by a very small incision (actually with tiny surgical sissors) made to remove the healed tissue around the inside of the opening, leaving behind fresh tissues. A single stitch or two and in a couple of days it heals closed in a normal manner.

HI, I had to call the Interventional Radiology Dept. at the Medical Center where I am treated because they gave me an app. but forgot to put down the time. While I was on the phone I told the nurse I would probably have to talk to the Doctor before he put the new tube in because I was having problems. She said wait maybe one of them can talk to you now. I told hom the drain problem and he said it has made its own track by now, he asked if I was in contact with Nutrition, I said " said no they just tell me what to eat after an operation and I never hear from them again" He kind of clucked. He said his Dept. put in the standard size PEG tube but Nutrition carried a slightly larger one , he said he would call up there and get one so he could put it in when I come in for the change.That will take care of the problem, simple huh? The next question is ,What is the Nutrition Dept. suppose to be doing that I do not know about? They tell us how many cans of Boost a day we need , thats about all.Or is there more?

Hi, Well I seem to be answering my own questions. Today someone from nutrition called about my Peg. They want me to go to the Gastorology Dept., there they will try to give me a new Peg. Right now I have what is called a size 12 F rench tube, they will replace with a size 14 French tube, the tube will be different it will have a cap, then if I need to use it for feedings or a flush I remove cap and put extension on the tube.They just slide this tube in and the is a baloon type thing in my stomach. Anyone have one of these? If the hole is not big enough I guess they cannot do this and I will go back to Radiology. This is suppose to be better for active people who have had their tube long enough that it has its own track. I do not like change but I guess I will have to go with this one.

Many docs prefer the ballon type, vs. the pig tail type. But to us a tube is a tube, the retention method USUALLY is only significant when it is time to take it out. Just think, with that new, really big tube you'll be able to chug a can of Ensure in seconds!!!

John's PEG tube has a cap and when he wants to use it, he has to remove the cap and screw on and extension. It is attached in the stomach with a butterfly of some sort. When it comes out they will just turn it from the cap area. If you get one of these be sure to get replacement caps immediately. There are generic caps which fit the tops of syringes etc and they fit John's tube. Also we got a replacement attachment for feeding in case the original got lost. They were not happy about giving us these but did so.
John also just developed an infection under the skin surrounding the tube. He had to put warm moist compresses on it as it is draining around the tube. My brother is a surgeon and puts PEGS in. He said it is not uncommon to get and infection.
Meredith

My PEG lately has become much slower to use. It used to be that I could empty two cans in one half hour and I would have to slow it down so that it did not make me feel uncomfortable. Lately, even with a new drip bag, it has taken closer to an hour to empty.
My question is this: Do the PEGs gradually get clogged up? Do I, after 6 months of having this one, need to go in and get a new one?

Thanks for the info.

Danny G.

Hi, I had my tube for about seven months when Radiology found out. They found out because I caught it in a laundry basket and had to go in the next day and get a new one.I pulled it almost the whole way out I pushed it back in again! If I had been using it for food I would have had to be in the same day. They threw a fit! No one told me I had to replace it every 3 months. They say stomach acids work on it and it is better to have it replaced. If your food is running that slow you should call and ask about replacement. When I talked to the nurse about my new type of tube, she said, and it will have to be replaced every 3 months, so I guess this is standard to keep them in good condition.If there is anyone who has not seen an old one they are "black" on the end that is in your stomach.PS; I have always liked a slow drip, I try to make it a relaxing time like I would a normal meal, you guys are in too big a hurry!

g,
I don't mind a relatively slow drip, but as I go to work more now days, it takes a whole hour in the morning when I need to get going. Noone ever told me about replacing the PEG at any time. I did speak to my surgeon's asst. who suggested that I flush the PEG with a carbonate like sprite or coke. It seems that I had heard that before but forgot it. I will give that a try and if it does not work I have a backup appointment on Monday with the folks that put it in.
Has anyone gotten rid of his or her PEG and made up the difference drinking Ensure or Boost Plus. It seems like that could work now that I can swallow Boost quite easily, but 8 cans of that stuff would be a lot to drink in a day.

Danny G.