Please talk to me about Gtubes

G

grassisgreener

New member
I have lots of questions, so I really appreciate anyone who reads this and answers for me!
I am a little overwhelmed when reading about Gtubes because it seems like there are several ways to place the tube (some involving an incision, others endoscopicly, etc) and several types of tubes/buttons etc. And I have not even begun to investigate pumps yet but over the years I have read various posts about some people like one pump over another.

Here are my questions: what is your experience was with placement, tube type, and pump type?
Also, does anyone have a good link to a page that describes this stuff?
Another question, if a pump is set to run for say 4 hours, how are enzymes given over that 4 hour period?
I think that is all I can think of for now, thanks so much for any help you can give me!
 
G

grassisgreener

New member
I have lots of questions, so I really appreciate anyone who reads this and answers for me!
I am a little overwhelmed when reading about Gtubes because it seems like there are several ways to place the tube (some involving an incision, others endoscopicly, etc) and several types of tubes/buttons etc. And I have not even begun to investigate pumps yet but over the years I have read various posts about some people like one pump over another.

Here are my questions: what is your experience was with placement, tube type, and pump type?
Also, does anyone have a good link to a page that describes this stuff?
Another question, if a pump is set to run for say 4 hours, how are enzymes given over that 4 hour period?
I think that is all I can think of for now, thanks so much for any help you can give me!
 
K

katethekid

Guest
I hope you get the answers you need. Sometimes it takes a bit, but hopefully someone who has experience with this will come along soon. I have only had Gtubes placed during surgery before and they were removed before I left the hospital, so I'm afraid I'm not much help. This is a great thread though.
 
K

katethekid

Guest
I hope you get the answers you need. Sometimes it takes a bit, but hopefully someone who has experience with this will come along soon. I have only had Gtubes placed during surgery before and they were removed before I left the hospital, so I'm afraid I'm not much help. This is a great thread though.
 
C

CDavis

New member
My 4 yr old daughter had a G-tube also called a Mic-Key button place this past Dec. It's been a difficult experiance for me. My daughter adjusted to it very quickley. She is able to connect it to herself and disconnect it easily.
We only use it 1 or 2 times daily so she takes enzymes right before it startes, just like before a meal.
If my child were old enough I would have opted for a nasal tube but I don't know if my daughter would have liked it. Like I said I've had a hard time with the entire placement and getting used to it. Everyone says that my experiance isn't typical. I think the bigest problem is that I wasn't prepaired enough.
I wasn't ready for just how painful the surgery is and seeing my child in so much pain and being told by her that I can't ever hug her again because she dosen't want it to hurt. In about two months we were hugging again.
IThe nursing staff at the hospital were all over booked and too busy to teach me how to use it or answer my questions. we lefft the hospital not knowing if she could bath with it, or how to wash it, or what the different things we had broght home were or even how many enzyms to take with each feeding. They had used it at the hospital without giving her enzyms!
When I called the Gastroentrologist they began by giving me info on a different patient then they gave me generic info that acctually didn't apply to us.
Well, most of the negitive experiance was my and the hospitals fault. the only real draw back is the times the tube hurts my child, when she throws a tantrum, when it gets tugged on, and sometimes when she's eating by mouth. The Drs have no answers for this and say it shouldn't hurt anymore, but it does.
I hope you get some answers that are better for you than mine. I'm not trying to talk you out of your decision if it's the right time to get one you need all the support you can get. I hope you find all the answers you need and have a lot of support.
 
C

CDavis

New member
My 4 yr old daughter had a G-tube also called a Mic-Key button place this past Dec. It's been a difficult experiance for me. My daughter adjusted to it very quickley. She is able to connect it to herself and disconnect it easily.
We only use it 1 or 2 times daily so she takes enzymes right before it startes, just like before a meal.
If my child were old enough I would have opted for a nasal tube but I don't know if my daughter would have liked it. Like I said I've had a hard time with the entire placement and getting used to it. Everyone says that my experiance isn't typical. I think the bigest problem is that I wasn't prepaired enough.
I wasn't ready for just how painful the surgery is and seeing my child in so much pain and being told by her that I can't ever hug her again because she dosen't want it to hurt. In about two months we were hugging again.
IThe nursing staff at the hospital were all over booked and too busy to teach me how to use it or answer my questions. we lefft the hospital not knowing if she could bath with it, or how to wash it, or what the different things we had broght home were or even how many enzyms to take with each feeding. They had used it at the hospital without giving her enzyms!
When I called the Gastroentrologist they began by giving me info on a different patient then they gave me generic info that acctually didn't apply to us.
Well, most of the negitive experiance was my and the hospitals fault. the only real draw back is the times the tube hurts my child, when she throws a tantrum, when it gets tugged on, and sometimes when she's eating by mouth. The Drs have no answers for this and say it shouldn't hurt anymore, but it does.
I hope you get some answers that are better for you than mine. I'm not trying to talk you out of your decision if it's the right time to get one you need all the support you can get. I hope you find all the answers you need and have a lot of support.
 
A

andyh81

New member
Hello,
My daughter had to get a G/J tube put in when she was 6 months old. The reason was she would puke up any formula or food we gave her and with the CF she was loosing weight fast and would not have made it without the tube.
My wife and I we're pretty broken up about it and didn't know what to expect. We luckily had an excellent cf and gastro team and we're given every bit of support and information needed. We also ask every question that comes to mind and demand answers (they probably hate us, but we only care about our daughter). When we first left the hospital the tube was a long one that suck out from her belly about 8 inches because the regular one was too big for an infant. Some time later she was able to get a G/J tube.
The difference between a G tube and a G/J tube: G tube just goes into the belly and a G/J tube has an extra tube that runs into the intestine. The G/J tube is a pain to change because you need to have it changed in radioligy, it takes awhile, and our daughter is stubborn and we had to hold her down which I'll never get used to. On the other hand the G tube can be change in a couple of minutes and you can even do it at home. We had both and you can't tell the difference on the out side except the G/J has and extra port.
I'm sorry I can't remember the pump we had. We did have a couple of different ones and neither was better than the other, but the last one was smaller and that counts for something when traveling. When using the pump you give the enzymes when you start and then again when the cycle is finished.
The tube really takes some time to get used to and you have to worry about the possibility that it can be pulled out, which thankfully never happened. But looking back we are very thankful for that little piece of plastic because it saved our daughters life. Also when she'd have a fever or when she went to the hospital with the flew it made it a breeze to get nutrients in her.
Last year when she was 7, she started to eat like a horse and swallowing her enzymes so we slowly became less dependent on it. Once we hadn't used it for 6 months the doctor suggested we take it out. Our daughter never wants to get it again, mostly because she hated when people asked what the little bump under her shirt is, so when she doesn't want to eat we remind her of the G tube.
How old is the person getting the tube? If they are old enough to understand all the stuff that comes with having the tube then maybe they can be persuaded to eat more.
Feel free to send a private message with any other questions. My wife and I have been through a lot and understand how you are feeling. In the end just try to think what's best for the patient.
 
A

andyh81

New member
Hello,
My daughter had to get a G/J tube put in when she was 6 months old. The reason was she would puke up any formula or food we gave her and with the CF she was loosing weight fast and would not have made it without the tube.
My wife and I we're pretty broken up about it and didn't know what to expect. We luckily had an excellent cf and gastro team and we're given every bit of support and information needed. We also ask every question that comes to mind and demand answers (they probably hate us, but we only care about our daughter). When we first left the hospital the tube was a long one that suck out from her belly about 8 inches because the regular one was too big for an infant. Some time later she was able to get a G/J tube.
The difference between a G tube and a G/J tube: G tube just goes into the belly and a G/J tube has an extra tube that runs into the intestine. The G/J tube is a pain to change because you need to have it changed in radioligy, it takes awhile, and our daughter is stubborn and we had to hold her down which I'll never get used to. On the other hand the G tube can be change in a couple of minutes and you can even do it at home. We had both and you can't tell the difference on the out side except the G/J has and extra port.
I'm sorry I can't remember the pump we had. We did have a couple of different ones and neither was better than the other, but the last one was smaller and that counts for something when traveling. When using the pump you give the enzymes when you start and then again when the cycle is finished.
The tube really takes some time to get used to and you have to worry about the possibility that it can be pulled out, which thankfully never happened. But looking back we are very thankful for that little piece of plastic because it saved our daughters life. Also when she'd have a fever or when she went to the hospital with the flew it made it a breeze to get nutrients in her.
Last year when she was 7, she started to eat like a horse and swallowing her enzymes so we slowly became less dependent on it. Once we hadn't used it for 6 months the doctor suggested we take it out. Our daughter never wants to get it again, mostly because she hated when people asked what the little bump under her shirt is, so when she doesn't want to eat we remind her of the G tube.
How old is the person getting the tube? If they are old enough to understand all the stuff that comes with having the tube then maybe they can be persuaded to eat more.
Feel free to send a private message with any other questions. My wife and I have been through a lot and understand how you are feeling. In the end just try to think what's best for the patient.
 
B

breatheforher

New member
My daughter had her gtube (mickey) placed when she was 7 (she is now 18) and its been a lifesaver. Whether you have it done endoscopically or surgically it requires an incision. My daughters was not done endoscopically because they also did a procedure (sorry dont remember name) so that she could lie flat to sleep during feedings so it could not be aspirated into her lungs. If you are considering nasogastric tube (in nose) there is a very high risk of aspiration into the lungs. My daughter is on an elemental feeding that does not require any enzymes because the protein is already broke down for absorption. As far as the type of pump our favorite has been the one she has now (kangaroo joey) - but we use whatever our insurance covers.
 
B

breatheforher

New member
My daughter had her gtube (mickey) placed when she was 7 (she is now 18) and its been a lifesaver. Whether you have it done endoscopically or surgically it requires an incision. My daughters was not done endoscopically because they also did a procedure (sorry dont remember name) so that she could lie flat to sleep during feedings so it could not be aspirated into her lungs. If you are considering nasogastric tube (in nose) there is a very high risk of aspiration into the lungs. My daughter is on an elemental feeding that does not require any enzymes because the protein is already broke down for absorption. As far as the type of pump our favorite has been the one she has now (kangaroo joey) - but we use whatever our insurance covers.
 
T

Tracy390

Guest
My daughter is now 20 & has had her Mickey Button for quite a while now. We tried the G-J tube & had an awful experience with it. It keep coming out & we came to the conclusion it was going to far down into her intestines to properly digest the formula & she had alot of diarrhea. We then moved on to the mickey button which was much better. It's hidden which is a plus especially when they get older. That's very important to her. As far as the enzymes we have tried several different ways. Amber receives her feeds continuously while sleeping (she eats during the day). The powder enzymes that are placed in the bag along with the feed seemed to partially digest the feed before it entered her stomach. It really looked pretty gross in the bag. She now takes 8 enzymes immediately prior to tube feeds & 8 at the end of the feeds. It seems to be working out OK. The tube is very easy to change which you can learn yourself. I did it for years but now that Amber is older she does it herself now. You can also do bolus feeds thru the day if needed. We do not do that currently. As far as the pump, she uses the kangroo pump which seems to serve it's purpose. It has an alarm if something mal-functions which is very important if the patient has diabetes & has already been given their insulin. I know it's a scary thing but CF kids are very strong & seem to adjust to changes quite well. It really just becomes part of your daily routine & it helps significantly in their weight gain battle. I hope I have helped you with your decision. Good luck & God bless!
 
T

Tracy390

Guest
My daughter is now 20 & has had her Mickey Button for quite a while now. We tried the G-J tube & had an awful experience with it. It keep coming out & we came to the conclusion it was going to far down into her intestines to properly digest the formula & she had alot of diarrhea. We then moved on to the mickey button which was much better. It's hidden which is a plus especially when they get older. That's very important to her. As far as the enzymes we have tried several different ways. Amber receives her feeds continuously while sleeping (she eats during the day). The powder enzymes that are placed in the bag along with the feed seemed to partially digest the feed before it entered her stomach. It really looked pretty gross in the bag. She now takes 8 enzymes immediately prior to tube feeds & 8 at the end of the feeds. It seems to be working out OK. The tube is very easy to change which you can learn yourself. I did it for years but now that Amber is older she does it herself now. You can also do bolus feeds thru the day if needed. We do not do that currently. As far as the pump, she uses the kangroo pump which seems to serve it's purpose. It has an alarm if something mal-functions which is very important if the patient has diabetes & has already been given their insulin. I know it's a scary thing but CF kids are very strong & seem to adjust to changes quite well. It really just becomes part of your daily routine & it helps significantly in their weight gain battle. I hope I have helped you with your decision. Good luck & God bless!
 
A

Allansarmy

Guest
First, I am not sure of your age. Just guessing from the way your typing that you are an adult.

My point of view will come from a parent of a 15 year old boy that was diagnosed at 4 months and has had the G-tube put in when he was 10. He was severely under weight and the doctors were worried about his mortality rate once he reached puberty. He was a very picky eater which didn't help.

My son has a Gbutton which is very flat and flush with the skin and clear in color. He likes this one better than his previous one that stuck out about 1 inch from the surface of the skin. He gets 3 cans of Nutren 2.0 (500 calories per can) My son takes Zenpep 20,000 and takes his usual 4 pill right before his feeding at night. He lets it run most the whole night and it usually finishes before he wakes up so I would say it runs over a 7 hour period tops. YOU and the Doctor will need to come into an agreement which feels better for you. You definitely need to take the enzymes before you get your feedings. I have seen some CF patients wake up in the middle of night and take more enzymes, but in my opnion this is counter productive as you need a good quality sleep.

We made the right decision for my son, to be honest we were reluctant at first as we were afraid that other kids would make fun of him. Kids are relentless and they love to pick apart anything that makes you different. we were afraid what that my son would swim with his shirt on in the summer or if we went to a water park. These were all very selfish reasons in the end and my sons health was more important. My son did get very depressed in the hospital with this 12" tube sticking out (waiting to get his button placement), but he surprised us later by not really caring what kids thought about his tube. He realized that as long as he didn't make a big deal of it, the other kids didn't mock him.

He gained 25 pounds the first 5 months of button placement and dietitian was so pleased that she used his growth chart to show other parents how important it was to get this done.

My son uses the Kangaroo Joey pump and we use the Kangaroo Joey 1000ml bags with the Mic Key extension sets. My advice, is to clean the Mic Key extension that goes into your port as soon as the feeding is done in the morning with hot water. Change it out after a few weeks. or weekly depending on how well you maintain it.

My son wants it out I am not going to lie here, but what 15 year old would want something like that.

I hope I answered some of your questions here. I am sorry I forget the Fringe size that he has. I know its a very slim line version that fits flat against his skin and has a flap that cover the port, it is hardly noticable and he likes it a lot more than his last ones. It goes in from the outside into the stomach and it has a balloon that keeps it in place. You can even change it out if you had to at home and sometimes you do have to replenish the sterile water that goes into the balloon with about 3-5cc worth of sterile water, it must be sterile water and not saline though as it will mess up the balloon.

Few links of tube placements.

http://surgery.med.umich.edu/pediatric/clinical/physician_content/procedures/gastrostomy_tube.shtml

Now on this page, you will see a typical G-tube placement, don't let all of that worry you. As a matter of fact the picture on that page looks like an older version. once again my son has a newer one that fits flat against his stomach and you can barely notice it even with is shirt off.
 
A

Allansarmy

Guest
First, I am not sure of your age. Just guessing from the way your typing that you are an adult.

My point of view will come from a parent of a 15 year old boy that was diagnosed at 4 months and has had the G-tube put in when he was 10. He was severely under weight and the doctors were worried about his mortality rate once he reached puberty. He was a very picky eater which didn't help.

My son has a Gbutton which is very flat and flush with the skin and clear in color. He likes this one better than his previous one that stuck out about 1 inch from the surface of the skin. He gets 3 cans of Nutren 2.0 (500 calories per can) My son takes Zenpep 20,000 and takes his usual 4 pill right before his feeding at night. He lets it run most the whole night and it usually finishes before he wakes up so I would say it runs over a 7 hour period tops. YOU and the Doctor will need to come into an agreement which feels better for you. You definitely need to take the enzymes before you get your feedings. I have seen some CF patients wake up in the middle of night and take more enzymes, but in my opnion this is counter productive as you need a good quality sleep.

We made the right decision for my son, to be honest we were reluctant at first as we were afraid that other kids would make fun of him. Kids are relentless and they love to pick apart anything that makes you different. we were afraid what that my son would swim with his shirt on in the summer or if we went to a water park. These were all very selfish reasons in the end and my sons health was more important. My son did get very depressed in the hospital with this 12" tube sticking out (waiting to get his button placement), but he surprised us later by not really caring what kids thought about his tube. He realized that as long as he didn't make a big deal of it, the other kids didn't mock him.

He gained 25 pounds the first 5 months of button placement and dietitian was so pleased that she used his growth chart to show other parents how important it was to get this done.

My son uses the Kangaroo Joey pump and we use the Kangaroo Joey 1000ml bags with the Mic Key extension sets. My advice, is to clean the Mic Key extension that goes into your port as soon as the feeding is done in the morning with hot water. Change it out after a few weeks. or weekly depending on how well you maintain it.

My son wants it out I am not going to lie here, but what 15 year old would want something like that.

I hope I answered some of your questions here. I am sorry I forget the Fringe size that he has. I know its a very slim line version that fits flat against his skin and has a flap that cover the port, it is hardly noticable and he likes it a lot more than his last ones. It goes in from the outside into the stomach and it has a balloon that keeps it in place. You can even change it out if you had to at home and sometimes you do have to replenish the sterile water that goes into the balloon with about 3-5cc worth of sterile water, it must be sterile water and not saline though as it will mess up the balloon.

Few links of tube placements.

http://surgery.med.umich.edu/pediatric/clinical/physician_content/procedures/gastrostomy_tube.shtml

Now on this page, you will see a typical G-tube placement, don't let all of that worry you. As a matter of fact the picture on that page looks like an older version. once again my son has a newer one that fits flat against his stomach and you can barely notice it even with is shirt off.
 
R

rmotion

New member
I have had several G-tubes placed, I am 42 and have them for over 20 years.
Right now I have a Bard G-tube which is a flat silicone flap( looks like something that belongs on an inflatable raft).
I use an Enteralite Infinity pump - which is portable and not gravity fed. Much easier to move around and travel etc. I have had the Kangaroo and other variations. The non gravity pump is really the best.
For the last 15 years I would use the typical formula prescribed by my doc- Nutren, Peptem, a to z canned formulas.
I did gain weight with these formulas but only recently have I figured out that my G-Tube can give me health, a real nutritional advantage.
Today I had a spinach, squash, egg, walnut, cherry, salmonand olive oil smoothie!
Sounds yum - if you had to drink this noxious mixture it would not be possilble.
Well administered via my G-tube I just had 800 calories of real food and real nutrious nutrients that you can not get out of a can.
What I am saying is bottom line: Everyone with CF should have a G-tube - not just for gaining weight but to have a way to get mega nutrition from real foods not canned!
Look up my posts here about G-tube advantage and I can help you change your health.
So dont fuss about the who what where of G-tubes - get what ever type that your doc says, go through the hassle of getting it, use the formula for weight gain, but use it to get real nutrients your body needs!

Please see these other posts

G-tube advantage
When is the last time you had a hard boiled egg, olive oil and squash smoothie?
<a href="messageview.cfm?catid=903&threadid=610454&highlight_key=y&keyword1=g%2Dtube">http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=610454&highlight_key=y&keyword1=g%2Dtube</a>
CAUTION: Only read this if you can change your thinking on CF and nutrition!
<strong><a href="messageview.cfm?catid=903&threadid=611811&enterthread=y">http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611811&enterthread=y</a></strong>
 
R

rmotion

New member
I have had several G-tubes placed, I am 42 and have them for over 20 years.
Right now I have a Bard G-tube which is a flat silicone flap( looks like something that belongs on an inflatable raft).
I use an Enteralite Infinity pump - which is portable and not gravity fed. Much easier to move around and travel etc. I have had the Kangaroo and other variations. The non gravity pump is really the best.
For the last 15 years I would use the typical formula prescribed by my doc- Nutren, Peptem, a to z canned formulas.
I did gain weight with these formulas but only recently have I figured out that my G-Tube can give me health, a real nutritional advantage.
Today I had a spinach, squash, egg, walnut, cherry, salmonand olive oil smoothie!
Sounds yum - if you had to drink this noxious mixture it would not be possilble.
Well administered via my G-tube I just had 800 calories of real food and real nutrious nutrients that you can not get out of a can.
What I am saying is bottom line: Everyone with CF should have a G-tube - not just for gaining weight but to have a way to get mega nutrition from real foods not canned!
Look up my posts here about G-tube advantage and I can help you change your health.
So dont fuss about the who what where of G-tubes - get what ever type that your doc says, go through the hassle of getting it, use the formula for weight gain, but use it to get real nutrients your body needs!

Please see these other posts

G-tube advantage
When is the last time you had a hard boiled egg, olive oil and squash smoothie?
<a href="messageview.cfm?catid=903&threadid=610454&highlight_key=y&keyword1=g%2Dtube">http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=610454&highlight_key=y&keyword1=g%2Dtube</a>
CAUTION: Only read this if you can change your thinking on CF and nutrition!
<strong><a href="messageview.cfm?catid=903&threadid=611811&enterthread=y">http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611811&enterthread=y</a></strong>
 
B

bananagirl

New member
Hi,
I got my g-tube when I was 13 and I am now 20. I think mine was placed through an endoscopy procedure but they still have to make an insicion on you stomach. A major down side to getting it placed was that it hurt A LOT!!! I don't think I got out of the hospital bed for at least 4 or 5 days after getting it placed, which is weird for me normally I only sleep in the bed at night and spend most of my hospital days in the various chairs in the room. It also hurt to do my vest, to cough and to do pft's. Sleeping was also a problem since I normally sleep on my stomach but after getting the tube placed it hurt way to much. After a week or two I could walk again and the pain was starting to go away and eventually I could sleep on my stomach again. Now I don't even notice it at all. Sorry for all this bad stuff but I just think it is important that you are prepared. (though I don't necessarily suggest telling your daughter how much it will hurt since she is probably already scared.

On to more positive things. I kind of have a love hate relationship with my tube. I mean who wouldn't kinda hate having a tube sticking out of your stomach. On the other hand it has many benefits. On occasion I have to take a liquid medicine, which I can't stand. Well that is no longer a problem since now I just put it through my tube. It is also nice when I am sick and don't feel like eating. I just hook myself up and can get some food still. Another bonus is when I am hungry but don't know what to eat or don't like any of the food in my house I can just do a can and I am good to go.

As far as pumps go I have used both the Kangaroo Pet and the Enteralite Infinity. Out of the two I like the Enteralite Infinity the best. It is supper tiny and light weight and it doesn't have to be on a pole. I hate having medical equipment in my room since it makes it feel like a hospital. (which is icky!) There is a backpack that you can get for the enteralite Infinity pump and then the pump and the bag of formula can sit in that and there is no need for a pole. I usually put the bag on my night stand or hand it on the side post of my bed. It is also nice if I have to go to the bathroom at night since I don't have to push a pole down the hall I simply put on the backpack and go. It is also very quiet which was not the case for the Kangaroo pet pump. I started with the Pet pump (i'm not sure if they even have them anymore since this was a few years ago) It was ok but it was very hospital like, and had to be on a pole. I ended up switching from doing night feeds to doing bolus (quick with gravity) feeds during the day. It helped me a little but It was a lot of work to fit all my feeds in in one day, since I had to spilt them up because putting 1000 ml of a thick milkshake like substance over say 30 mins is way to much for my tiny stomach to handle. Though I preferred this method until this past winter when I finally decided to go back to overnight feeds after wish years of bolus feeds. I love it now. Like I said the pump is so easy and I have been gaining weight like crazy. Before I would gain a pound here and there but it was really slow. Since I have started doing overnight feeds I have gained a pound per week. And it is so easy I just hook it up an go to bed and don't have to think about doing cans all day. I can do whatever I want during the day, if I want to eat something I can but I also don't have to since I am doing all the calories i need and then some in my night feeds. ( I do five cans of Nutren 2.0, over 9-10 hours, which ends up being 2500 calories a night). For enzymes I take a meal dose when I go to bed and again when I wake up, then if I happen to wake up at all during the night I try to take another dose. It took me a little for my body to get used to it but now I don't have stomach aches during the day and even when I did I was still gaining weight so I was getting most of the formula. All this to say that it is totally worth it, and I am finally kind of glad I got a G-tube!

As far as the types I have had 3 different ones. My first tube was called the genie bard, I don't think they make it anymore but bard has a similar one. The good thing about this one is that it is more permanent and unlike the other types you don't have to change it every few months. It has a rubber mushroom like thing on the inside that stops it from coming out instead of a balloon filled with water which is what the other tubes have. The downside is that it will eventually need to be relaxed, which began causing me a lot of anxiety as the time got nearer because I did not want my tube to suddenly break while I was say on vacation or something like that. It also hurt just a little to get it out. They literally pull it until it pops out, which hurt but it was over so quick that I didn't really feel it that much. I got it replaced with a mickey button. This kind has a balloon that is filled with water on the inside and needs to be changed every few months. You can change it at home simply by deflating the balloon, popping the tube out (kind of like an earring) and putting the new one in. I like this aspect of the mickey. The thing I did not like about the mickey is that the part that sits on your skin is much bigger than the genie bard was. I know have a Mini-one which is very similar to the mickey but it is a lot smaller. I like this one the best and am planning on sticking with it for a while. Plus the connecters ( to hook it to the pump) are purple and who doesn't love that!

I also wanted to give you a few tips that I have learned over the years. First of all it is important to run water through both the connector and g-tube before unhooking it, they don't always do this in the hospital when they give me feeds and I have found that it makes the tube turn all yellow and nasty. I just use tap water since I would drink tap water and my tube is in my stomach not my intestines. One crazy thing that I have found happens sometimes is my tube kind of sucks in on itself. It is kind of uncomfortable but to fix it I just need to eat something or drink something. The tube is pretty well hidden under clothes, especially if I wear a tank top underneath, it usually bunches up a little on my stomach anyway and that hits the tube really well. For swimming I wear a tankini and I have found that the ones that are tight around the stomach but have some gathering there hide it great. I once tried a lose tankini but It would float up in the water and show my tube.

I hope you find some of this helpful, sorry it is so long. I have so much to say about G-tubes and wanted to give you as much information as I could. As far as websites you can look at www.mic-key.com, http://www.bardaccess.com/feed-button.php and http://www.amtinnovation.com/balloon_MiniONE_button.html, these are for the different tubes. I would also suggest doing a google search or youtube search for more videos and sites. There is all kinds of information out there about the different tubes and pumps. Once you find one you like just request that one from you doctors they will probably be willing to work with you.
Hope this all helps!
 
B

bananagirl

New member
Hi,
I got my g-tube when I was 13 and I am now 20. I think mine was placed through an endoscopy procedure but they still have to make an insicion on you stomach. A major down side to getting it placed was that it hurt A LOT!!! I don't think I got out of the hospital bed for at least 4 or 5 days after getting it placed, which is weird for me normally I only sleep in the bed at night and spend most of my hospital days in the various chairs in the room. It also hurt to do my vest, to cough and to do pft's. Sleeping was also a problem since I normally sleep on my stomach but after getting the tube placed it hurt way to much. After a week or two I could walk again and the pain was starting to go away and eventually I could sleep on my stomach again. Now I don't even notice it at all. Sorry for all this bad stuff but I just think it is important that you are prepared. (though I don't necessarily suggest telling your daughter how much it will hurt since she is probably already scared.

On to more positive things. I kind of have a love hate relationship with my tube. I mean who wouldn't kinda hate having a tube sticking out of your stomach. On the other hand it has many benefits. On occasion I have to take a liquid medicine, which I can't stand. Well that is no longer a problem since now I just put it through my tube. It is also nice when I am sick and don't feel like eating. I just hook myself up and can get some food still. Another bonus is when I am hungry but don't know what to eat or don't like any of the food in my house I can just do a can and I am good to go.

As far as pumps go I have used both the Kangaroo Pet and the Enteralite Infinity. Out of the two I like the Enteralite Infinity the best. It is supper tiny and light weight and it doesn't have to be on a pole. I hate having medical equipment in my room since it makes it feel like a hospital. (which is icky!) There is a backpack that you can get for the enteralite Infinity pump and then the pump and the bag of formula can sit in that and there is no need for a pole. I usually put the bag on my night stand or hand it on the side post of my bed. It is also nice if I have to go to the bathroom at night since I don't have to push a pole down the hall I simply put on the backpack and go. It is also very quiet which was not the case for the Kangaroo pet pump. I started with the Pet pump (i'm not sure if they even have them anymore since this was a few years ago) It was ok but it was very hospital like, and had to be on a pole. I ended up switching from doing night feeds to doing bolus (quick with gravity) feeds during the day. It helped me a little but It was a lot of work to fit all my feeds in in one day, since I had to spilt them up because putting 1000 ml of a thick milkshake like substance over say 30 mins is way to much for my tiny stomach to handle. Though I preferred this method until this past winter when I finally decided to go back to overnight feeds after wish years of bolus feeds. I love it now. Like I said the pump is so easy and I have been gaining weight like crazy. Before I would gain a pound here and there but it was really slow. Since I have started doing overnight feeds I have gained a pound per week. And it is so easy I just hook it up an go to bed and don't have to think about doing cans all day. I can do whatever I want during the day, if I want to eat something I can but I also don't have to since I am doing all the calories i need and then some in my night feeds. ( I do five cans of Nutren 2.0, over 9-10 hours, which ends up being 2500 calories a night). For enzymes I take a meal dose when I go to bed and again when I wake up, then if I happen to wake up at all during the night I try to take another dose. It took me a little for my body to get used to it but now I don't have stomach aches during the day and even when I did I was still gaining weight so I was getting most of the formula. All this to say that it is totally worth it, and I am finally kind of glad I got a G-tube!

As far as the types I have had 3 different ones. My first tube was called the genie bard, I don't think they make it anymore but bard has a similar one. The good thing about this one is that it is more permanent and unlike the other types you don't have to change it every few months. It has a rubber mushroom like thing on the inside that stops it from coming out instead of a balloon filled with water which is what the other tubes have. The downside is that it will eventually need to be relaxed, which began causing me a lot of anxiety as the time got nearer because I did not want my tube to suddenly break while I was say on vacation or something like that. It also hurt just a little to get it out. They literally pull it until it pops out, which hurt but it was over so quick that I didn't really feel it that much. I got it replaced with a mickey button. This kind has a balloon that is filled with water on the inside and needs to be changed every few months. You can change it at home simply by deflating the balloon, popping the tube out (kind of like an earring) and putting the new one in. I like this aspect of the mickey. The thing I did not like about the mickey is that the part that sits on your skin is much bigger than the genie bard was. I know have a Mini-one which is very similar to the mickey but it is a lot smaller. I like this one the best and am planning on sticking with it for a while. Plus the connecters ( to hook it to the pump) are purple and who doesn't love that!

I also wanted to give you a few tips that I have learned over the years. First of all it is important to run water through both the connector and g-tube before unhooking it, they don't always do this in the hospital when they give me feeds and I have found that it makes the tube turn all yellow and nasty. I just use tap water since I would drink tap water and my tube is in my stomach not my intestines. One crazy thing that I have found happens sometimes is my tube kind of sucks in on itself. It is kind of uncomfortable but to fix it I just need to eat something or drink something. The tube is pretty well hidden under clothes, especially if I wear a tank top underneath, it usually bunches up a little on my stomach anyway and that hits the tube really well. For swimming I wear a tankini and I have found that the ones that are tight around the stomach but have some gathering there hide it great. I once tried a lose tankini but It would float up in the water and show my tube.

I hope you find some of this helpful, sorry it is so long. I have so much to say about G-tubes and wanted to give you as much information as I could. As far as websites you can look at www.mic-key.com, http://www.bardaccess.com/feed-button.php and http://www.amtinnovation.com/balloon_MiniONE_button.html, these are for the different tubes. I would also suggest doing a google search or youtube search for more videos and sites. There is all kinds of information out there about the different tubes and pumps. Once you find one you like just request that one from you doctors they will probably be willing to work with you.
Hope this all helps!
 
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