How many adults here have or had G-Tubes?

[rcq925]

I am just curious has to how many adults on this board have or had G-Tubes at one point or another. I am part of G-Tube discussion on another board and it seems like a lot of the younger CFers are getting G-Tubes to help gain and maintain weight and it got me really curious about whether or not that is a new trend in CF.

I read on this adult board a lot and don't really see a lot of discussion about adults with G-Tubes. So if you have one and wouldn't mind sharing when you got it, how long you have had it and how you feel about it, I would really appreciate it.

Just so you know, my daughter is doing fine right now, she is 2 and right at the 50th percentile in weight without any supplements, shakes, ect. I have definite strong feelings against getting a G-Tube put in too quickly in young kids with CF and I am curious as to why this is all the sudden it seems, becoming so acceptable in the world of CF. I am definitely not against the G-Tube if it IS medically necessary, but it seems like a lot of the adults here don't have one (or at least if they do I haven't read about it) and I wonder why all the sudden it is becoming increasingly popular.

Thanks in advance for all replies!! As always, I appreciate everyone's time and information!

 

[CowTown]

Funny to post this, I'm currently asking advice on getting one in another thread. I'm interested in hearing too.

 

[thelizardqueen]

I've never had a g-tube. My doctors had suggested it a couple of times when I was younger, but I always managed to put the weight on myself if I worked really hard. My current doctor is against g-tubes, unless I've exhausted all other options. For the most part, when I do buckle down and eat like a horse, I'm able to put weight on. So far so good I say.

 

[littledebbie]

My story is the same as Liz's (except my Doc's not against it), I am not for it, for me.

 

[Landy]

I don't have one now & never have. I'm not sure if it even was an option when I was little. If it was I don't remember my parents ever discussing it for me.
I too would be curious to know how many over 30 have had one or currently have one.

 

[fr3ak]

I got my G-tube (called pegs here) when I was 27

prior to that I did NG feeds from about 22....

I had my G tube for roughly 6 months, I had so many problems with it it just wasnt worth keeping, instead of gaining weight with it I actually lost more weight which I couldnt really afford to loose...(my stomach is on the wrong side which could have had something to do with the problem, most ppl with g tubes Ive seen have them placed on the left side...Mine was on the right side)

I had incredible pain with my tube and heaps of other probs, at the time it would have been great to keep it, I was like 35kgs which is about 77 pound and losing...

on a personal note, I wished Id not got mine, because it didnt work for me, but that said it has worked for others!

 

[eli]

Hi Becky,

G-tubes hmmmm......My daughter iss 17months and is only the 10th percentile in weight and height. Her doc's have not mentioned a g-tube as yet, although i wouldn't want her to get one unless like you said its medically necessary.

Her doc's have said to me that they are not concerned about her weight, although i was. They think shse is just going to be a petite little girl. I also know many other mothers of cf'ers and they too don't have g-tubes.
But i am from Australia, so maybe there not as common here, i don't know.

 

[Jane]

I know this has been a hot topic recently. If you notice, its mostly the parents of cf kids who have been asking and its mostly the older pw/cf who are saying they don't think its necessary. I'm not judging, just observing.

It is currently trendy for doctors to push for g-tubes instead of waiting until there is a malnourishment issue with a decline in overall health. We all know that it has been proven that p/cf live longer and healthier lives with good nutrition, but our doctor told us more of them (docs) are pushing for g-tubes as a weight-gain option now than they ever did before. (This info came from a study, but I can't remember where) Having a g-tube takes away some of the stress and pressure of trying to gain on your own especially with younger patients. You all know how there are current trends in cf care when ALL the docs push something new (HS, motrin, TOBI etc).

That's why us parents of cf kids are hearing about g-tubes a lot, but older CFers weren't encouraged to get them when they were young. I think its going to be more common for CFers to have g-tubes in the next few years.

 

[JazzysMom]

I inquired about getting a g tube a few years back. I had never had one & to this day still dont. My doctor felt it wasnt an option for me at that time or now. SHe felt that I could put the weight on myself if I disciplined & worked really hard which I did. Another reason was she said as adults our stomach muscles are much trougher/stronger from the years of coughing etc so the insertion & recovering of the insertion itself would be much more difficult in an adult than a child.

 

[Tess]

I haven't ever had a g-tube for the purpose of weight gain
I have always been a good weight, even when I was younger...

 

[rcq925]

I agree with you Jane. I think the trend is going to be to get G-Tubes in younger CF patients. I guess I just hope Hayley does not need one!

 

[anonymous]

I never even knew about G-Tubes until I came to this site.

I am 34, and never have one. It was never brought up to me by my doctor, and while I do have problems with weight gain, its never been something that I couldn't maintain on my own.

I don't know what percentile I was growing up, but I was short and petite for my age (still am, I guess). I'm guessing doctors are pushing the tubes more in younger cfers so they don't get the stunted growth and development as they grow older.

I don't plan on ever getting one at this stage. I guess its a personal choice for parents to make for their children. I would be interested to know how easily it could be removed once the child has become an adult and can maintain on their own - or is it recommended to keep it forever?

--Wallflower

 

[lynchmobshredder]

I have a G tube. ive had it about 15 years now. It saved my life

 

[ClashPunk82]

I have had my g-tube for about 2 years now and it's worked pretty well.I just wasn't able to do it myself and I am so glad I have my tube.

 

[Cariann2005Rob]

i have one... i had it put in like 1 1/2 ago... i was thin thin thin and it was hard to put on weight! But now, i weigh like 106lbs. at 5'3"... i only use it when i go into the hospital! i hate it! it grows noids or whatever my doc said they were! its where my body is trying to push the tube out... it looks yucky!!! and it hurts! they keep telling me to put hydrocortozone on it so i do but it never helps it go away! the only thing that makes them go away is when they burn it off with a match looking thing! oh man does that burn like crazy!!! but yah i am thankfull that i got one back then when i needed help, but as of now its is just a big pain in my rear... it also leaks so i cant ever wear clothes that are to tight otherwise it leaks and leaves stains!! Ahhhh yah i wish i didnt have it now!!! ITs just a pain!! but ok im just rambling on im getting off!!! take care!
Cariann 21 w/cf cfrd mrsa

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Cariann2005Rob</b></i>

it grows noids or whatever my doc said they were!
Cariann 21 w/cf cfrd mrsa</end quote></div>

Those are called granulated tissue, they do look gross. My son's doctor said it happens when the site stays wet and gets irritated. After he had one burned off, he's kept a split gauze pad under it to keep it dry. Also he sometimes puts stomahesive powder on it. Its been fine ever since.

 

[perky79]

I currently have a g-tube. I had it placed december of 2005. I guess i have mixed emotions about it. My doctor and i agreed to have it removed once i can maintain 150lbs. im at 120lbs and i was at 100lbs so it is working. its a huge pain and the crap i pump into it is nasty! cant belch when i get up in the morning or i taste it.

 

[AmyKins]

I have had a g-tube for over a year & it wasn't helping me gain the weight because I was always votiming from the stuff in my stomach making me feel sick, so two weeks ago I had a j-tube put in and I have already gained about 8 pounds. I am very under weight, so this is def. helping.