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.

Danny,
We just came back from having a new PEG inserted in John's tummy. Yesterday his sprang leaks.I guess the stomach acid just ate right through it. He was dealing with an infection just under the skin aroung the tube. The radiologist told him PEGs need to be replaced every six months (at least). No one told us that when he had it put in in July. Now we know. He was going to try to drink his ensure but his doctor said she felt it was too much of a strain at this time. He is working with a speech therapist to improve his eating. The therapist feels he will be able to have it removed in six to eight weeks.
Don't be in too much of a hurry to get rid to it.
Meredith

Meredith,
Thanks for the info. and support. I am scheduled for next Monday to have my PEG checked out. Maybe it does need replacing by now. Another strange thing has happened lately: the feeding tube has become disengaged and the liquid has run down my side...YUCK. Of course this has happened once or twice before, but I think that this time it is the result of the valve getting old or worn. So even if they don't replace the PEG, at least I want the valve exchanged. I don't know if the PEG itself has been worn down or not, but , interestingly, when they did the esophageal dilations on me, the Dr. took a photo of the pigtail part of the PEG from inside the stomach. It looked in tact to my untrained eyes!

Danny G.

Danny,
John said that when he caught his towel on his PEG Wednesday afternoon after his shower, it came out alittle. At that time he noticed how black the tube was--he said like a "sewer pipe". Anyway, he wiped it off and it had three areas where it looked worn through. So he poured some water in it before he pushed it back in and he said it was like a sprinkler with water going all over. We would have never imagined it was worn or leaking even with the skin infection until he accidently caught it. By the way since replacement, the infection is almost gone.
Let us know how you make out.
Meredith

I am not sure if I should tell this story or not , but sometime our experiences help someone else. I went to Gastorology to get my new tube. They showed me a kit, nice little in stomach tube with a flat cap type thing on it , it lifts up when you want to feed then fits snug back on.There are 2 attachments that went with it, one like the top of the pigtail tube I had, another more fancy , it had a second opening in case you wanted to add meds while you were feeding. I really liked this whole thing! It was like the " Plaza" of feeding tubes! So this nutritionist or whatever goes to put it in, no go, she tries the smaller type no go. she gets a Doctor, he tries no go, by now I am bleeding inside, its on the tubes and coming out of the hole. They send me down to see the Radiology Technologist. I have my little kit with me that I have been told was very expensive, he looks at me under the machine and says get me a pigtail. I have the same type tube I had before. Some people have a thick stomach wall and cannot use this type of PEG. I guess that was suppose to sound good to them anyway. The very expensive one went in the trash. Moral of the story is, If it works don't fix it! I am puzzled where you all get your Pegs put in? This machine they use gives them a view of inside my stomach, I can see it out of the corner of my eye, the pigtail of the peg, bubbles and my backbone. Are you all getting yours just pushed in ? Where did you get the original PEG?

gnelson, I received my PEG in the gastroenterology dept., while knocked out. Used it for 6 months, no leaks, no infections, no coming out, then had it removed because I no longer needed it. All in all, a life saver with no problems or downsides.

I had an appt. yesterday with a Radiologist at MD Anderson to check out my PEG, which was put in about 7 months ago. The doctor said that it was working fine, but since they tend to get worn after 6 months, he suggested putting in a new one while I was there. When the original PEG was installed I was given a sedative. However now that the scar tissue is built up, the doctor removed the old one and put in the new one without any pain medicine. I barely felt it. In fact I made him repeat the procedure because the first replacement PEG was too long and I felt it would interfere with my clothing and possibly activity. So he put in a second one.

Danny G.

John had his PEG replaced in radiology last Thursday. They put in the same kind as before--one that had a removable cap. The thing that struck me as odd however, was the fact that this PEG had no button or locking device on the outside of the tummy. We asked about this and the fact that it had 4 inches of play in and out of the stomach. No problem we were told. Sunday John started with terrible diarreha and gas after each feed. We thought it was a "bug". By Tuesday we were no longer convinced and we talked to our daughter and brother who are doctors. Our daughter (peditrician) said that she thought the tube was emptying into the intestine--that it had moved. We went back to radiology yesterday. They put in dye and yes it had moved into the intestine. It had to be removed again and a new one put in. This is the one with the three heads. It is alittle fatter. It has a belly stopper on the outside. It was terrible for John to go through because the hole had to be stretched to put this in. He is doing good now. Again I admire the courage of you gals and guys.
Meredith

Hi, I am disappointed I could not get the newer type PEG , but I can see it is just me. Since I have had my tube for almost 2 1/2 years, I should be glad I have never had any infections, they put dye in every time and it is always where it is suppose to be.Getting burpy after they change it has been the only problem. After they operate I am glad to have it with no hassle. I guess like Danny I will be glad to get rid of it, it sure does seem like forever sometimes. Someone said in a post one time about the troubles we go thru on a day to day basis, that it was the price we paid to be alive. I think of that often.