Question about feeding tubes

[NYCLawGirl]

Hey everyone,

I just have a question about feeding tubes. My doctor firse started discussing them with me today and I have to admit I'm feeling pretty unhappy with the thought. Are many people out there on them? Are they difficult to maintain/deal with? Was it a huge life adjustment when you get it put in, or am I making a mountain out of a molehill?

Sorry to bombard people with questions - but I'd appreciate any thoughts you have!

Thanks,
Piper

 

[NYCLawGirl]

Hey everyone,

I just have a question about feeding tubes. My doctor firse started discussing them with me today and I have to admit I'm feeling pretty unhappy with the thought. Are many people out there on them? Are they difficult to maintain/deal with? Was it a huge life adjustment when you get it put in, or am I making a mountain out of a molehill?

Sorry to bombard people with questions - but I'd appreciate any thoughts you have!

Thanks,
Piper

 

[NYCLawGirl]

Hey everyone,

I just have a question about feeding tubes. My doctor firse started discussing them with me today and I have to admit I'm feeling pretty unhappy with the thought. Are many people out there on them? Are they difficult to maintain/deal with? Was it a huge life adjustment when you get it put in, or am I making a mountain out of a molehill?

Sorry to bombard people with questions - but I'd appreciate any thoughts you have!

Thanks,
Piper

 

[NYCLawGirl]

Hey everyone,

I just have a question about feeding tubes. My doctor firse started discussing them with me today and I have to admit I'm feeling pretty unhappy with the thought. Are many people out there on them? Are they difficult to maintain/deal with? Was it a huge life adjustment when you get it put in, or am I making a mountain out of a molehill?

Sorry to bombard people with questions - but I'd appreciate any thoughts you have!

Thanks,
Piper

 

[NYCLawGirl]

Hey everyone,

I just have a question about feeding tubes. My doctor firse started discussing them with me today and I have to admit I'm feeling pretty unhappy with the thought. Are many people out there on them? Are they difficult to maintain/deal with? Was it a huge life adjustment when you get it put in, or am I making a mountain out of a molehill?

Sorry to bombard people with questions - but I'd appreciate any thoughts you have!

Thanks,
Piper

 

[Skye]

Piper,

That is a difficult thought<img src="i/expressions/face-icon-small-sad.gif" border="0"> I am a speech pathologist, so I have worked with many adults and children with feeding tubes. It does not seem to interfere with the activity of the young ones. You would not know they have one had it not been for having access to their medical records<img src="i/expressions/face-icon-small-smile.gif" border="0">

A feeding tube was suggested to me over a year ago. I was at about 104 and dropping weight. I started drinking those calorie filled breakfast drinks and that kept my weight stable. Then in about October of 2006 I decided to go on Nexium and my weight began to dramatically improve. I went from about 108 to my current 130. That is the heaviest I have ever been. I actually have to watch my weight now which I have never done. If you are not on an antacid, you might consider it if your appetite is good otherwise. I can't talk intelligently about the science of it, but there is evidence that antacids help in some situations.

Hope this helps.

 

[Skye]

Piper,

That is a difficult thought<img src="i/expressions/face-icon-small-sad.gif" border="0"> I am a speech pathologist, so I have worked with many adults and children with feeding tubes. It does not seem to interfere with the activity of the young ones. You would not know they have one had it not been for having access to their medical records<img src="i/expressions/face-icon-small-smile.gif" border="0">

A feeding tube was suggested to me over a year ago. I was at about 104 and dropping weight. I started drinking those calorie filled breakfast drinks and that kept my weight stable. Then in about October of 2006 I decided to go on Nexium and my weight began to dramatically improve. I went from about 108 to my current 130. That is the heaviest I have ever been. I actually have to watch my weight now which I have never done. If you are not on an antacid, you might consider it if your appetite is good otherwise. I can't talk intelligently about the science of it, but there is evidence that antacids help in some situations.

Hope this helps.

 

[Skye]

Piper,

That is a difficult thought<img src="i/expressions/face-icon-small-sad.gif" border="0"> I am a speech pathologist, so I have worked with many adults and children with feeding tubes. It does not seem to interfere with the activity of the young ones. You would not know they have one had it not been for having access to their medical records<img src="i/expressions/face-icon-small-smile.gif" border="0">

A feeding tube was suggested to me over a year ago. I was at about 104 and dropping weight. I started drinking those calorie filled breakfast drinks and that kept my weight stable. Then in about October of 2006 I decided to go on Nexium and my weight began to dramatically improve. I went from about 108 to my current 130. That is the heaviest I have ever been. I actually have to watch my weight now which I have never done. If you are not on an antacid, you might consider it if your appetite is good otherwise. I can't talk intelligently about the science of it, but there is evidence that antacids help in some situations.

Hope this helps.

 

[Skye]

Piper,

That is a difficult thought<img src="i/expressions/face-icon-small-sad.gif" border="0"> I am a speech pathologist, so I have worked with many adults and children with feeding tubes. It does not seem to interfere with the activity of the young ones. You would not know they have one had it not been for having access to their medical records<img src="i/expressions/face-icon-small-smile.gif" border="0">

A feeding tube was suggested to me over a year ago. I was at about 104 and dropping weight. I started drinking those calorie filled breakfast drinks and that kept my weight stable. Then in about October of 2006 I decided to go on Nexium and my weight began to dramatically improve. I went from about 108 to my current 130. That is the heaviest I have ever been. I actually have to watch my weight now which I have never done. If you are not on an antacid, you might consider it if your appetite is good otherwise. I can't talk intelligently about the science of it, but there is evidence that antacids help in some situations.

Hope this helps.

 

[Skye]

Piper,

That is a difficult thought<img src="i/expressions/face-icon-small-sad.gif" border="0"> I am a speech pathologist, so I have worked with many adults and children with feeding tubes. It does not seem to interfere with the activity of the young ones. You would not know they have one had it not been for having access to their medical records<img src="i/expressions/face-icon-small-smile.gif" border="0">

A feeding tube was suggested to me over a year ago. I was at about 104 and dropping weight. I started drinking those calorie filled breakfast drinks and that kept my weight stable. Then in about October of 2006 I decided to go on Nexium and my weight began to dramatically improve. I went from about 108 to my current 130. That is the heaviest I have ever been. I actually have to watch my weight now which I have never done. If you are not on an antacid, you might consider it if your appetite is good otherwise. I can't talk intelligently about the science of it, but there is evidence that antacids help in some situations.

Hope this helps.

 

[ashleydn]

Hi Piper I have had a feeding tube since I was 12ys old and I'm 23 now and still have it. I have had it changed a few times throughout the years and sometimes it can leak around the site all depends on what kind you get. I have not had too many problems with it though and it has become a part of life. I have adapted well to it. I have had the years where I do not use it at all and people ask why don't I take it out it has in a way became a security thing because I know that when I'm unable to eat or not eating enough I can do a can during the day and at night as I sleep I eat. It's a personal choice and like everything else in a CFers life it can be a pain in the butt I have had my moments when it has irritated me to the core. Leaking, changing the tube, sometimes it can get irritated around the site it can be a pain but the 11 years I have had it, it has caused the lease of my problems. I have a hard time putting on weight so it's a good solution for me. I believe you have to ask your self can you afford to be with out it and get the calories you need or is it getting to hard to keep the weight up to where it's affecting your overall health. It really has not been bad but again research all your options. It is convenient and you really don't do much but lay there and sleep as it goes in. It's an easy thing my little cousins use to love to set it up for me back in the day and then they were 6yrs. old so it's a simple thing. You do have to adapt to the appearance of it but after a little while it just becomes a part of you. If you have any questions feel free to e-mail me ashley_dn_1984@yahoo.com hope this was helpful.

 

[ashleydn]

Hi Piper I have had a feeding tube since I was 12ys old and I'm 23 now and still have it. I have had it changed a few times throughout the years and sometimes it can leak around the site all depends on what kind you get. I have not had too many problems with it though and it has become a part of life. I have adapted well to it. I have had the years where I do not use it at all and people ask why don't I take it out it has in a way became a security thing because I know that when I'm unable to eat or not eating enough I can do a can during the day and at night as I sleep I eat. It's a personal choice and like everything else in a CFers life it can be a pain in the butt I have had my moments when it has irritated me to the core. Leaking, changing the tube, sometimes it can get irritated around the site it can be a pain but the 11 years I have had it, it has caused the lease of my problems. I have a hard time putting on weight so it's a good solution for me. I believe you have to ask your self can you afford to be with out it and get the calories you need or is it getting to hard to keep the weight up to where it's affecting your overall health. It really has not been bad but again research all your options. It is convenient and you really don't do much but lay there and sleep as it goes in. It's an easy thing my little cousins use to love to set it up for me back in the day and then they were 6yrs. old so it's a simple thing. You do have to adapt to the appearance of it but after a little while it just becomes a part of you. If you have any questions feel free to e-mail me ashley_dn_1984@yahoo.com hope this was helpful.

 

[ashleydn]

Hi Piper I have had a feeding tube since I was 12ys old and I'm 23 now and still have it. I have had it changed a few times throughout the years and sometimes it can leak around the site all depends on what kind you get. I have not had too many problems with it though and it has become a part of life. I have adapted well to it. I have had the years where I do not use it at all and people ask why don't I take it out it has in a way became a security thing because I know that when I'm unable to eat or not eating enough I can do a can during the day and at night as I sleep I eat. It's a personal choice and like everything else in a CFers life it can be a pain in the butt I have had my moments when it has irritated me to the core. Leaking, changing the tube, sometimes it can get irritated around the site it can be a pain but the 11 years I have had it, it has caused the lease of my problems. I have a hard time putting on weight so it's a good solution for me. I believe you have to ask your self can you afford to be with out it and get the calories you need or is it getting to hard to keep the weight up to where it's affecting your overall health. It really has not been bad but again research all your options. It is convenient and you really don't do much but lay there and sleep as it goes in. It's an easy thing my little cousins use to love to set it up for me back in the day and then they were 6yrs. old so it's a simple thing. You do have to adapt to the appearance of it but after a little while it just becomes a part of you. If you have any questions feel free to e-mail me ashley_dn_1984@yahoo.com hope this was helpful.

 

[ashleydn]

Hi Piper I have had a feeding tube since I was 12ys old and I'm 23 now and still have it. I have had it changed a few times throughout the years and sometimes it can leak around the site all depends on what kind you get. I have not had too many problems with it though and it has become a part of life. I have adapted well to it. I have had the years where I do not use it at all and people ask why don't I take it out it has in a way became a security thing because I know that when I'm unable to eat or not eating enough I can do a can during the day and at night as I sleep I eat. It's a personal choice and like everything else in a CFers life it can be a pain in the butt I have had my moments when it has irritated me to the core. Leaking, changing the tube, sometimes it can get irritated around the site it can be a pain but the 11 years I have had it, it has caused the lease of my problems. I have a hard time putting on weight so it's a good solution for me. I believe you have to ask your self can you afford to be with out it and get the calories you need or is it getting to hard to keep the weight up to where it's affecting your overall health. It really has not been bad but again research all your options. It is convenient and you really don't do much but lay there and sleep as it goes in. It's an easy thing my little cousins use to love to set it up for me back in the day and then they were 6yrs. old so it's a simple thing. You do have to adapt to the appearance of it but after a little while it just becomes a part of you. If you have any questions feel free to e-mail me ashley_dn_1984@yahoo.com hope this was helpful.

 

[ashleydn]

Hi Piper I have had a feeding tube since I was 12ys old and I'm 23 now and still have it. I have had it changed a few times throughout the years and sometimes it can leak around the site all depends on what kind you get. I have not had too many problems with it though and it has become a part of life. I have adapted well to it. I have had the years where I do not use it at all and people ask why don't I take it out it has in a way became a security thing because I know that when I'm unable to eat or not eating enough I can do a can during the day and at night as I sleep I eat. It's a personal choice and like everything else in a CFers life it can be a pain in the butt I have had my moments when it has irritated me to the core. Leaking, changing the tube, sometimes it can get irritated around the site it can be a pain but the 11 years I have had it, it has caused the lease of my problems. I have a hard time putting on weight so it's a good solution for me. I believe you have to ask your self can you afford to be with out it and get the calories you need or is it getting to hard to keep the weight up to where it's affecting your overall health. It really has not been bad but again research all your options. It is convenient and you really don't do much but lay there and sleep as it goes in. It's an easy thing my little cousins use to love to set it up for me back in the day and then they were 6yrs. old so it's a simple thing. You do have to adapt to the appearance of it but after a little while it just becomes a part of you. If you have any questions feel free to e-mail me ashley_dn_1984@yahoo.com hope this was helpful.

 

[Marjolein]

Ok don't laugh, but i'm the overnight feeds freak here <img src="i/expressions/face-icon-small-smile.gif" border="0"> Everbody laughs and looks disgusted when they here how i take it.

That's because i just drink it. First when i was young (have had the feeds since i was 6 or so) i had a tube through my nose. There was no way i was going to school with it so in and out it went.
I had this for about 2 years i think. I think i used 1 liter and later 750 ml of Nutrison Concentrated (that's 2 kcal in 1 ml). It got to the point where i coughed the tube out sometimes a few times a night. I would cough so hard that it came out of my mouth, so i had to pull it back through my nose and put it back in again.

After a few years this didn't work anymore, it hurt and i was just fed up with it.
I was in the hospital then, our local hospital, and the nurse said that i had to take it, there was no way that she was going to leave it. Buttons and such were not used that much back then, at least i had never heard of them.. And they were never mentioned to me. She said that i could drink it.. So she poored it in a big mug (about 200 ml) and i drank ik with a straw all in one time. After that i would take a bit of orange juice. This worked really well. I did taste it, but not that much and the orange juice would chance it when i was done cause of the strong taste of the juice.

When i was home i would get 250 ml's at ones. Right before i went to bed, then at about 3 at night and the last was with breakfast. I had my feeds instead of breakfast. Even when i had had my feeds i did eat something at 10.15am, when we had our break at school in the morning.

Now years and years later i still have it. I take 250 ml with a straw and orange juice right after, just before i go to bed. And i take 250 ml when i wake up.

What i take now helps me stay at the same weight and this is fine with me and my doctors. When i need to gain weight i take a little more.

Now that i've done this all these years i'm happy that i do this and didn't have surgery for a button or something like that. One scar less (already have 4 from ports, one huge one from my transplant and a few small ones from chest tubes).

 

[Marjolein]

Ok don't laugh, but i'm the overnight feeds freak here <img src="i/expressions/face-icon-small-smile.gif" border="0"> Everbody laughs and looks disgusted when they here how i take it.

That's because i just drink it. First when i was young (have had the feeds since i was 6 or so) i had a tube through my nose. There was no way i was going to school with it so in and out it went.
I had this for about 2 years i think. I think i used 1 liter and later 750 ml of Nutrison Concentrated (that's 2 kcal in 1 ml). It got to the point where i coughed the tube out sometimes a few times a night. I would cough so hard that it came out of my mouth, so i had to pull it back through my nose and put it back in again.

After a few years this didn't work anymore, it hurt and i was just fed up with it.
I was in the hospital then, our local hospital, and the nurse said that i had to take it, there was no way that she was going to leave it. Buttons and such were not used that much back then, at least i had never heard of them.. And they were never mentioned to me. She said that i could drink it.. So she poored it in a big mug (about 200 ml) and i drank ik with a straw all in one time. After that i would take a bit of orange juice. This worked really well. I did taste it, but not that much and the orange juice would chance it when i was done cause of the strong taste of the juice.

When i was home i would get 250 ml's at ones. Right before i went to bed, then at about 3 at night and the last was with breakfast. I had my feeds instead of breakfast. Even when i had had my feeds i did eat something at 10.15am, when we had our break at school in the morning.

Now years and years later i still have it. I take 250 ml with a straw and orange juice right after, just before i go to bed. And i take 250 ml when i wake up.

What i take now helps me stay at the same weight and this is fine with me and my doctors. When i need to gain weight i take a little more.

Now that i've done this all these years i'm happy that i do this and didn't have surgery for a button or something like that. One scar less (already have 4 from ports, one huge one from my transplant and a few small ones from chest tubes).

 

[Marjolein]

Ok don't laugh, but i'm the overnight feeds freak here <img src="i/expressions/face-icon-small-smile.gif" border="0"> Everbody laughs and looks disgusted when they here how i take it.

That's because i just drink it. First when i was young (have had the feeds since i was 6 or so) i had a tube through my nose. There was no way i was going to school with it so in and out it went.
I had this for about 2 years i think. I think i used 1 liter and later 750 ml of Nutrison Concentrated (that's 2 kcal in 1 ml). It got to the point where i coughed the tube out sometimes a few times a night. I would cough so hard that it came out of my mouth, so i had to pull it back through my nose and put it back in again.

After a few years this didn't work anymore, it hurt and i was just fed up with it.
I was in the hospital then, our local hospital, and the nurse said that i had to take it, there was no way that she was going to leave it. Buttons and such were not used that much back then, at least i had never heard of them.. And they were never mentioned to me. She said that i could drink it.. So she poored it in a big mug (about 200 ml) and i drank ik with a straw all in one time. After that i would take a bit of orange juice. This worked really well. I did taste it, but not that much and the orange juice would chance it when i was done cause of the strong taste of the juice.

When i was home i would get 250 ml's at ones. Right before i went to bed, then at about 3 at night and the last was with breakfast. I had my feeds instead of breakfast. Even when i had had my feeds i did eat something at 10.15am, when we had our break at school in the morning.

Now years and years later i still have it. I take 250 ml with a straw and orange juice right after, just before i go to bed. And i take 250 ml when i wake up.

What i take now helps me stay at the same weight and this is fine with me and my doctors. When i need to gain weight i take a little more.

Now that i've done this all these years i'm happy that i do this and didn't have surgery for a button or something like that. One scar less (already have 4 from ports, one huge one from my transplant and a few small ones from chest tubes).

 

[Marjolein]

Ok don't laugh, but i'm the overnight feeds freak here <img src="i/expressions/face-icon-small-smile.gif" border="0"> Everbody laughs and looks disgusted when they here how i take it.

That's because i just drink it. First when i was young (have had the feeds since i was 6 or so) i had a tube through my nose. There was no way i was going to school with it so in and out it went.
I had this for about 2 years i think. I think i used 1 liter and later 750 ml of Nutrison Concentrated (that's 2 kcal in 1 ml). It got to the point where i coughed the tube out sometimes a few times a night. I would cough so hard that it came out of my mouth, so i had to pull it back through my nose and put it back in again.

After a few years this didn't work anymore, it hurt and i was just fed up with it.
I was in the hospital then, our local hospital, and the nurse said that i had to take it, there was no way that she was going to leave it. Buttons and such were not used that much back then, at least i had never heard of them.. And they were never mentioned to me. She said that i could drink it.. So she poored it in a big mug (about 200 ml) and i drank ik with a straw all in one time. After that i would take a bit of orange juice. This worked really well. I did taste it, but not that much and the orange juice would chance it when i was done cause of the strong taste of the juice.

When i was home i would get 250 ml's at ones. Right before i went to bed, then at about 3 at night and the last was with breakfast. I had my feeds instead of breakfast. Even when i had had my feeds i did eat something at 10.15am, when we had our break at school in the morning.

Now years and years later i still have it. I take 250 ml with a straw and orange juice right after, just before i go to bed. And i take 250 ml when i wake up.

What i take now helps me stay at the same weight and this is fine with me and my doctors. When i need to gain weight i take a little more.

Now that i've done this all these years i'm happy that i do this and didn't have surgery for a button or something like that. One scar less (already have 4 from ports, one huge one from my transplant and a few small ones from chest tubes).

 

[Marjolein]

Ok don't laugh, but i'm the overnight feeds freak here <img src="i/expressions/face-icon-small-smile.gif" border="0"> Everbody laughs and looks disgusted when they here how i take it.

That's because i just drink it. First when i was young (have had the feeds since i was 6 or so) i had a tube through my nose. There was no way i was going to school with it so in and out it went.
I had this for about 2 years i think. I think i used 1 liter and later 750 ml of Nutrison Concentrated (that's 2 kcal in 1 ml). It got to the point where i coughed the tube out sometimes a few times a night. I would cough so hard that it came out of my mouth, so i had to pull it back through my nose and put it back in again.

After a few years this didn't work anymore, it hurt and i was just fed up with it.
I was in the hospital then, our local hospital, and the nurse said that i had to take it, there was no way that she was going to leave it. Buttons and such were not used that much back then, at least i had never heard of them.. And they were never mentioned to me. She said that i could drink it.. So she poored it in a big mug (about 200 ml) and i drank ik with a straw all in one time. After that i would take a bit of orange juice. This worked really well. I did taste it, but not that much and the orange juice would chance it when i was done cause of the strong taste of the juice.

When i was home i would get 250 ml's at ones. Right before i went to bed, then at about 3 at night and the last was with breakfast. I had my feeds instead of breakfast. Even when i had had my feeds i did eat something at 10.15am, when we had our break at school in the morning.

Now years and years later i still have it. I take 250 ml with a straw and orange juice right after, just before i go to bed. And i take 250 ml when i wake up.

What i take now helps me stay at the same weight and this is fine with me and my doctors. When i need to gain weight i take a little more.

Now that i've done this all these years i'm happy that i do this and didn't have surgery for a button or something like that. One scar less (already have 4 from ports, one huge one from my transplant and a few small ones from chest tubes).