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#42433 03-06-2003 01:19 PM
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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

#42434 03-07-2003 09:37 AM
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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.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#42435 03-07-2003 12:54 PM
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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

#42436 03-09-2003 06:01 AM
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gnelson Offline OP
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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, StageIV, cancer free since Nov.9,2000
#42437 03-09-2003 01:06 PM
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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.

#42438 03-11-2003 08:23 AM
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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.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#42439 03-13-2003 02:57 AM
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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

#42440 03-13-2003 06:34 AM
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gnelson Offline OP
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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.


gnelson, StageIV, cancer free since Nov.9,2000
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