feeding tube questions

tgh30111
tgh30111 Member Posts: 7
in Esophageal Cancer #1
Hi. My husband was diagnosed last August with stage IV. He is HER2 postitive and really sensitive to chemo. He is currently doing well on Herceptin and Taxotere. Tumors and lymph nodes are responding and beginning to shrink.

He had a J tube placed several months ago before he started chemo because with his first round of 5FU he almost died. He has DPD which is an enzyme deficiency that wont allow 5FU to break down so it is usually fatal and something so few people have they don't test for it before beginning chemo. After just one round he was hospitalized for 3 weeks and could not eat due to SEVERE mucositis and all that comes with that.

He had a j tube placed but fortunately has not had to use it yet. He has an esophageal stent that causes really bad reflux and for several days at a time it is very hard for him to eat so we might start using it as well as how much he can eat.

My question is this,this tube can just come out and we are interested in a Mic-key button or nutriport button that is held in with a balloon, does anyone have one of these?

His nutritionist said she would like for these to be the standard tube instead of the standard j tube. His tube was only held by outside sutures and they came off very quickly and were quite bothersome. We have to keep a dressing on it just to hold it in.

Today I was told by the surgeons office that put the J tube in that Mic-key buttons were only for pediatrics but I have seen on some web sites adults that have them. As well has his nutritionist saying that about they should be standard.

We have made a follow up appointment with the surgeon to discuss changing this but I'm not sure they are going to be responsive to the idea.

Any feedback would be appreciated.

Comments

  • Unknown
    Unknown
    #2
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  • Brent_McG
    Brent_McG Member Posts: 6
    #3
    J tube worries
    Hi there. I honestly wouldn't worry too much about your J tube coming out. I had my J tube for 5 months and at first was worried it would pop out. The stitches had broke within the 1st month and I used tape to hold it. By month 3 I had my surgery and the surgeon restitched the tube to hold it in. That lasted about a week. I stressed it would pop out and always taped the site up to make sure it wouldn't. I even went awhile without taping it at all and the most it would "slide" out was an inch or so.

    By month 5 I was eating well enough on my own and was so sick and tired of the J tube and feedings that I pulled it out myself. To my surprise the part of the J tube that was inside me was a good 12inches long or more. I had no idea it was that long. I figured it was only a couple inches long. There was no way it could have worked itself out of me without me pulling on it or at least seeing it hanging out of me.

    Knowing how far the tube goes inside made me realize there was no way it could work itself out without me knowing about it. If I was you I would stick with the J tube and just use a piece of tape to hold it against the skin for piece of mind. Your husband has enough going on and doesn't need to hassle with surgery to place a new tube in. I am certain the tube won't work itself out. I rolled around, tossed, and turned in bed every night with my tube and it still never worked itself out of me. I think your husband will be just fine really.

    I hope this helps ease some stress for you and your husband. I know with this cancer there is enough to deal with already. Good luck and God bless.

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