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PEG installed-

letumwork's picture
Posts: 23
Joined: Mar 2013

Hi everyone- I finished the primary Cisplatin and concurrent radiation on May 10th and finally succumbed to PEG on Friday June7th. I started the adjuvant chemotherapy on May 30th and the 5FU tore up my mouth and throat way worse than the Cisplatan or Radiation and the DOCS all agreed the weightloss was too much. I seem to be getting quite a bit of pain from the PEG site when I sit up, roll over or move in certain directions(Like Hernia pain). If you slide the outer large plastic button outward, you can see 3 inner buttons that pull the tube way into my belly. That is where the pain is coming from and the Dr. who installed the tube says it's normal. Those inner buttons are glued or stitched and will come loose in week or so. It makes the tube site hard to clean as well as the buttons collect everything. Does anyone else have this type of tube and did you have pain. Were you able to gravity feed? My tube will only allow thin meals by pressure on the syringe. Thanks!

alligatorpointer's picture
Posts: 131
Joined: Jul 2012

The docs are usually good with treatment procedures, but the nurses are the ones who know the tricks of the trade when it comes to figuring out why something is not working right.  Unfortunately, it is now the weekend and unless there is an oncology nurse on call, you probably can't go have your oncology team nurse look at it until Monday.  It would still be a good idea to call the number that most oncology teams provide as a 24hr help line.  It is usually answered by a nurse who should be able to tell you if what you are experiencing can wait until next week or if you should have it looked at sooner.

Eddie J
Posts: 23
Joined: Sep 2012

Hi, . Check out the Olney Foundation web site its devoted to peg tube feeding and very good for information reagrding your concerns.

Good luck

letumwork's picture
Posts: 23
Joined: Mar 2013

Well. I went into the surgery Center on Monday with a very tender belly and got an appoiintment to look at the PEG tube which was intalled 9 days prior on Friday. The Doctor was different than the one who installed the tube(He was on Vacation in Paris) One look after removing the dressing and the outer sliding disk and he was wheeling me into the surgery room. He looked and pocked and prodded and decided I had 2 abcessses that needed draining and a new tube. The infections had gotten under the little foot pegs before they fell off. Even with massive superficial injections of licocaine and  Fentanyl with Versed IV, the pain of squeezing these things was unreal!!!!!!!. Luckily it didn't take too long and the Dr. thinks he got it all. Slipping on the new tube-15 seconds and no pain! Now I'm on a 10 day course of anibiotics. Round 2 of adjuvant Chemo is still on schedule for the end of June and hopefully the pesky infection is done with- Kapuut!!!!! The irony of my little side story is the pain of dealing with the tube made it much easier for me to endure the mouth and throat pain when eating! That's some sick sense of humor there!!!!

debbiejeanne's picture
Posts: 3095
Joined: Jan 2010

so sorry u had complications but sure glad u went to doc and they found it.  it could have been worse had u waited.  thanh goodness u listened 2 ur body.  now time to recover.


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