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11-30-2007, 11:04 PM   #1
dad_01
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Join Date: Jun 2007
NG Tubes

My 11 year old son will be trained on Monday on the use of an NG tube.

I'm interested in any experiences, suggestions, words of wisdom that anyone might wish to offer.

Thanks.
12-01-2007, 06:58 PM   #2
DanSJVDavis
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No words of wisdom. I've had a few, but didn't really like 'em. They kinda make your throat feel dry or like there's something stuck in it. My luck, I've gotten sick so much over the course of my life with Crohn's that I don't have much of a gag reflex anymore. Had one that they took out once leave a real nasty big bloody booger (sorry for being gross) that worried me, but they said it wasn't an issue and it sometimes happens.

My worst experience with one was when they had to put one in fast in an emergency because of my perforated bowel and chose a tube that was a little too big and split my nostril right at the tip of my nose. Still have the scar. There were just too many bad things happened that night. Shoulda sued the hospital, but lost the chance long long ago.

In truth, the worst part of an NG tube, once it's in is feeling like there's something in your throat (which there is). Once it's out your throat does feel a little irritated for a while. I've never been awake when they've put one in, but having one taken out is no picnic.
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12-01-2007, 09:55 PM   #3
dad_01
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Hmm. We're planning on putting this in before he goes to sleep and taking it out each morning when he wakes up.

We'll see how it goes.
12-02-2007, 12:25 PM   #4
DanSJVDavis
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The irritation might not be such an issue then. I had mine in for days before they took it out.
12-03-2007, 03:20 PM   #5
mle
 
Oh I had one in for over 4 days when I had my resection surgery last year. Just after one day my throat was so, so sore and it hurt to swallow. They gave me some of that oral spray stuff (I think it was Vicks brand) to sort of numb the pain but it didn't really help that much.
Poor little guy, that is just no fun at all. Hopefully it won't be too bad since he'll be asleep while it's in.
I felt immediate relief when they finally took mine out.
12-03-2007, 04:53 PM   #6
dad_01
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We had two hours of training this morning and then the ng tube was placed in my son. He found the iniital insertion very unpleasant but kept the tube in when we left. We did stop off on the way home at fast food and he gobbled down a Popeye's chicken meal, so it was good to see that he can eat with it in.

We'll see how the next few days or weeks go.

I'm told that, in Europe, the ng tube is used much more than in the U.S.

Also, I'm figuring there must be online bulletin boards for kids with ng tubes. If anyone has information I'd be glad to have it.
12-05-2007, 12:16 AM   #7
dad_01
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We did it! We did it! We did it!!!
After a uncomfortable, and panicy, first experience with the GI tube yesterday, at the hospital ng tube training, tonight my wife put the ng tube in my son and it was about 5 times easier.

My son really wanted the tube in - he said that from the one day it was in last night he felt more energetic than he had been in two weeks.

We picked up a few tricks to help the tube insertion go in much, much more smoothly. I think it won't be a problem for him at this point. I thought it miht take him three weeks or so to get used to having it put in but, after the second time, we basicallly have the technique down now and he is looking forward to gaining some weight.

Thanks everyone for your suggestions, support, and just basically being there to talk to.
12-05-2007, 11:49 AM   #8
mle
 
That is great news!! Your son has such a good attitude and I'm so glad that he's already seeing a benefit!
12-05-2007, 02:05 PM   #9
Shane
 
I didn't like having one and I'm 30. Fair play to your son, what a star.
12-05-2007, 10:39 PM   #10
dad_01
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mle said:
That is great news!! Your son has such a good attitude and I'm so glad that he's already seeing a benefit!
Tonight he proudly told me he set a personal broad jump record tonight (he practices broad jumping, along with other sports activities, in our living room) and said it was due to the feeding tube.

I don't know how much he is feeling may be a placebo effect but, if it is motivating him, it's a good thing.

The elementary schools in our district have a track meet every spring; he told me his goal is to win the quarter mile race. I think he wants to prove to himself that the crohn's won't hold him back in his life's objectives (he likes sports a lot).

I'm trying to find the names of pro athletes who have crohns. If anyone is aware of some, I'd be glad to hear them (I think a pro football quarterback named david garrard has crohns.).

P.S.: We got the ng tube in tonight and it was pretty easy.
12-05-2007, 11:17 PM   #11
Wiles
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I had an NG tube when I was 16.

I don't doubt he feels a lot more energetic, I know I did when I started tube feedings. I had lost a lot of weight before I went on the tube, but gained it all back (and more).

Putting it in gets easier as time goes on. I found my nose became a lot less sensitive to it after a while. At first I kept mine in all day, but by the end I was taking it in and out myself everyday.

I usually ran the tube over my ear; it seemed to be a lot less in the way up there.
12-06-2007, 12:03 AM   #12
dad_01
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Join Date: Jun 2007
Wiles said:
I had an NG tube when I was 16.

I don't doubt he feels a lot more energetic, I know I did when I started tube feedings. I had lost a lot of weight before I went on the tube, but gained it all back (and more).

Putting it in gets easier as time goes on. I found my nose became a lot less sensitive to it after a while. At first I kept mine in all day, but by the end I was taking it in and out myself everyday.

I usually ran the tube over my ear; it seemed to be a lot less in the way up there.
Hmm. I like the ear suggestion. I'll mention it to my son and see what he thinks. Thanks.
12-06-2007, 12:38 AM   #13
saidinstouch
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Location: San Francisco, California
David Garrard the starting QB of the Jacksonville Jaguars has Crohns and underwent some fairly serious surgery a few years back. There was a story about it on one of the sites like ccfa or something like that.

He took the starting job from Byron Leftwich this year after his athletic performance in games last year. He is a great example of an athlete not letting severe crohns disease hold him back.

Let me lookup the story for you if I can.

Edit: http://www.ccfa.org/about/news/garrard Here is the link to the story. Have your son read it, he will find it very inspirational, I know I did after losing my athleticism to crohns (especially with an abscess that has been open/draining from surgery for 2 years now).

Last edited by saidinstouch; 12-06-2007 at 12:41 AM.
12-06-2007, 04:44 PM   #14
dad_01
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Join Date: Jun 2007
Wiles said:
I had an NG tube when I was 16.

I don't doubt he feels a lot more energetic, I know I did when I started tube feedings. I had lost a lot of weight before I went on the tube, but gained it all back (and more).

Putting it in gets easier as time goes on. I found my nose became a lot less sensitive to it after a while. At first I kept mine in all day, but by the end I was taking it in and out myself everyday.

I usually ran the tube over my ear; it seemed to be a lot less in the way up there.
When you ran it over your ear, where did you put the tape? Right now, we clearly don't have the hang of the tape because it hurts him when we remove it. I was thinking of running the ng tube up over his ear and maybe placing a small piece of tape somewhere behind his ear, figuring the skin is a lot less sensitive there.
12-06-2007, 04:47 PM   #15
dad_01
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Join Date: Jun 2007
saidinstouch said:
David Garrard the starting QB of the Jacksonville Jaguars has Crohns and underwent some fairly serious surgery a few years back. There was a story about it on one of the sites like ccfa or something like that.

He took the starting job from Byron Leftwich this year after his athletic performance in games last year. He is a great example of an athlete not letting severe crohns disease hold him back.

Let me lookup the story for you if I can.

Edit: http://www.ccfa.org/about/news/garrard Here is the link to the story. Have your son read it, he will find it very inspirational, I know I did after losing my athleticism to crohns (especially with an abscess that has been open/draining from surgery for 2 years now).
David Garrard is a great story. My son likes to hear about athletes who have crohns - it gives him confidence that he can continue something he likes so much (sports).

Thanks.
12-06-2007, 08:44 PM   #16
DanSJVDavis
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I found when I had my ostomy pouch that it was a little less painful to pull off the tape if I took and gently pushed down on the skin with my thumb while gently pulling up on the tape. Still stung a bit, but never seemed as bad as just pulling on the tape itself.

I got to be rather skilled at changing those things in the 6 months I had it. Got it down to a science and about 10 to 15 seconds from take off to application of the new one with a minute or two of prep. One of the keys is trying not to swallow while you're changing it. Seems to make the bowels move in reflex. Least it did for me.
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