G-TUBE REMOVE?

My 12 yr old daughter has a Gtube, for venting a J-tube for feeds and a central line for TPN. She is hopefully going back in next week for botox injection. the 1st one worked and she was abole to get all nutrition by mouth and helped ALOT with pain and nausesness. My question is her gtube has been getting infected and she just wants it out. Should i encourage and ask the DR. any of you get ride of your Gtube and regret it later? anyone have a J tube and not a G?

thanks as always for your help
tricia

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8 replies. Join the discussion

Hi Tricia,
I have been lucky and have not had a J tube or G tube. But I wanted you to know that I am thinking of you and your daughter. With so many people here, I believe someone will be able to give you insight based on his/hers experience.
Nancy

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Ihave both also. I use my g tube for venting and draining. I am assuming she has gastroparesis, that is what I have. I had the botox 3 times to see if it would help and it did not.

This is just my opinion, but I would not get rid of the g tube. The botox is only supposed to last for up to 3 months and then she will not have anything to use for drainage.

I heard that after so many botox injections, you might get scar tissue on the pylorus and then the pyloris will close or get smaller. I had this and nothing could go thru and I had to have a pyloroplasty to open the pylorus up.

I have zero motility in my stomach and will have to be on the j tube for feeds and the g tube for the rest of my life so I have accepted this. I am sure being 12 years old it is very hard to deal with all of these tubes.

I would discuss with your GI doctor the idea of getting rid of the G tube and also the risk of getting scar tissue on her pylorus. I had all of this since 2001 so maybe things have changed some.

Good luck. Linda

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we had j and still have g tubes. the js havent work out well with us but the gtube has. we use ours for draining not feeds. my son is on tpn and has been for about 8 years and 2 years prior. he is 14 , attends school and most of his friends hardly know his medical situation which he loves. i would suggest and i'm sure the docs will say the same thing they told me. its better to leave it in because once its in its in but if you take it out its another surgy to put it back in once the holes closes. i dont know if you have a mic or not but maybe you'd want that. as far as infections we've havent had many in the gtube but lots in the broviac. i don't know how you clean your gtube but we were always told soap and water and sometimes we put a antibotic cream on the site. it may be hard for her and she might not like all the tubes but it is better to have them then to have them put back in later if you need them cuz surgery is far more painful.

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hi there, my name is Melanie-my 4yo adam has a g tube. We tried a gj a long time ago and it didn't work for him. He's had the g tube sine 1yo and it never bothered him till recently-cutting into his little social/sporty life. At the present moment he depends on it for his feeds but i've questioned removing and gotten mixed reactions (for in the future) . Most i've spoken with say not to remove. With GP it can come and go and it's such a risk of having to have it put back in.if you don't mind my asking what kind of trouble are you having with the g tube? excess tissue? constant infections?Be happy to help if i can. best of luck-give her a high five for me for all she deals with. Melanie

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Tricia:

I have a j-tube and not a g-tube, even though I have severe gastroparesis. I have had so many problems with the j-tube as far as infections go (transmitting to my bloodstream). I am in big believer in less is more. Right now I'm on TPN because the j-tube keeps getting infected, though I hope to get another j-tube (i have a temporary one to drainage now) because it does make life easier (when it's not infected). I had a MIC-KEY button and the surgeon thinks the balloon wore away at my jejunal mucosa causing the bacteria to enter my bloodstream.

Mimi

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She does have GP. and for some reason the Gtube keeps getting infected, that's sorta why we wanted it out. One less thing because as you know if it's not one thing it's another going wrong, so hoping it would actually keep her heathier. But it is so easy to forget when times are better how much it's need in difficult GP flares. I don't know, i'll see what the Dr. says.

thaks for your comments and thought, i've copied it to share with my husband.....

Linda did pyloroplasty help GP? I guess maybe not if your on J tube? the botox helped, she could eat...a GP diet.....but did enjoy eating again

thanks again everyone
tricia

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Good luck, Tricia. I'm always nauseous and I vomit a lot, so I'm sure a G-tube for venting would be good, but no one would even think of putting a second tube in me when the main one keeps getting infected. Of the different surgeons I've seen (I recently moved), one surgeon kept telling me it was impossible for the tube to get infected and I would be the first case ever to have that happen. Needless to say, he's no longer my surgeon. And my new surgeon said it was absolutely possible because of the balloon. I'm glad your daughter is able to eat a little!

Mimi

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THANKS AGAIN FOR YOUR INFO. My daughter went to GI yesterday and he said "no way" on taking the G out, I was o'k and prepared for that thanks to all your thoughts.Plus the DR told us that even if she doesn't "use it" it is actually still venting her her stomach just by the fact that it's an opening going in, and that it probably works more than we know just by being there. Didn't know that!
Anywho....she is going in today and they are doing a ballon dialation and botox all with the pilorus......He sais new "research " show that both of these together can help...I'll let ya know. And she gets her central line out today!
thank tricia

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