Feeeding tube -yes or no

T

teemteem

New member
<img src="i/expressions/moon.gif" border="0">Hello everyone,
i am new to this forum . I am a 31-year-old with mild CF.(pancreatic sufficient).I am colonized with PA and other multi drug bugs. I have a port for IV thrapy, which mostly i manage alone at home.
But i am not very junky always and more or less stable.
Recently i am having weight issues and feeding problems. My Pulmo thinks i will benefit from PEG tube.
I live in India where for most people(including doctors), CF are just two alphabets. We have no CF clinics, CF doctors, Nurses,Nutritionist n even diagnostic facility. I am still suspected with CF , since we dont have sweat test /genetic test facility in my city( a metro city).

PEG tube is not very common over here and CF is a little-known condition. i am in dire need of information. Almost everyone who heard about it tried to dissuade me against the surgery since it is an artificial process n they cant understand why i cant eat sufficienly thru mouth!!The Cf issues are hard to explain specially to those doctors who have hardly heard the name and for whom CF is just two alphabets!!
But i trust my Pulmo ,who has practiced in one of UK's largest transplant centre and cared for CFers for long.So i stopped listening to others. i trust my Doctor completely.

Since many of you must have gone thru this surgery and maintaining a G Tube, your exp n suggestions wud b very useful to me.
I wanted to know

1 What to expect after the surgery- i mean post op issues like pain, nausea,bowel problems,cough n so on.Can we cough effectively after surgery?else how do we get rid of the junk?i am not very junky always ,but mornings are bad mostly.
can i have the button device right from the beginning instaed of tube hanging from tummy?
when can i take bath after surgery?

2 Is maintaining a PEG single handedly a big issue?it is very troublesome?

3 Can i eat normally with G tube in or do i have to be mainly tube dependant?

4 does the tube need a daily maintainance, even when not used?

5 is a bolus feed ok with tube?is a gravity feed safe at night since i cannot afford the feeding pump worth 1.5 lakh n it is to be paid from our pocket.So i have to choose between a bolus feed or gravity feed. My doc feels i should feed whole night, beside the 3-time bolus feeds. m not too comfortable with a tube feed all night when i am alone at home with no support,medical cover/nurses.

6 what r the signs of trouble with the tube?

thank you so much for your inputs n sharing your experiences,you can visit my site
www.caringbridge.org/visit/pialimukherjee
to post your comments n watch my youtube video on CF awareness at
<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=kqV1IU5YS0I
">http://www.youtube.com/watch?v=kqV1IU5YS0I
</a>thanks n best wishes<img src="i/expressions/face-icon-small-smile.gif" border="0">

piali
 
T

teemteem

New member
<img src="i/expressions/moon.gif" border="0">Hello everyone,
i am new to this forum . I am a 31-year-old with mild CF.(pancreatic sufficient).I am colonized with PA and other multi drug bugs. I have a port for IV thrapy, which mostly i manage alone at home.
But i am not very junky always and more or less stable.
Recently i am having weight issues and feeding problems. My Pulmo thinks i will benefit from PEG tube.
I live in India where for most people(including doctors), CF are just two alphabets. We have no CF clinics, CF doctors, Nurses,Nutritionist n even diagnostic facility. I am still suspected with CF , since we dont have sweat test /genetic test facility in my city( a metro city).

PEG tube is not very common over here and CF is a little-known condition. i am in dire need of information. Almost everyone who heard about it tried to dissuade me against the surgery since it is an artificial process n they cant understand why i cant eat sufficienly thru mouth!!The Cf issues are hard to explain specially to those doctors who have hardly heard the name and for whom CF is just two alphabets!!
But i trust my Pulmo ,who has practiced in one of UK's largest transplant centre and cared for CFers for long.So i stopped listening to others. i trust my Doctor completely.

Since many of you must have gone thru this surgery and maintaining a G Tube, your exp n suggestions wud b very useful to me.
I wanted to know

1 What to expect after the surgery- i mean post op issues like pain, nausea,bowel problems,cough n so on.Can we cough effectively after surgery?else how do we get rid of the junk?i am not very junky always ,but mornings are bad mostly.
can i have the button device right from the beginning instaed of tube hanging from tummy?
when can i take bath after surgery?

2 Is maintaining a PEG single handedly a big issue?it is very troublesome?

3 Can i eat normally with G tube in or do i have to be mainly tube dependant?

4 does the tube need a daily maintainance, even when not used?

5 is a bolus feed ok with tube?is a gravity feed safe at night since i cannot afford the feeding pump worth 1.5 lakh n it is to be paid from our pocket.So i have to choose between a bolus feed or gravity feed. My doc feels i should feed whole night, beside the 3-time bolus feeds. m not too comfortable with a tube feed all night when i am alone at home with no support,medical cover/nurses.

6 what r the signs of trouble with the tube?

thank you so much for your inputs n sharing your experiences,you can visit my site
www.caringbridge.org/visit/pialimukherjee
to post your comments n watch my youtube video on CF awareness at
<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=kqV1IU5YS0I
">http://www.youtube.com/watch?v=kqV1IU5YS0I
</a>thanks n best wishes<img src="i/expressions/face-icon-small-smile.gif" border="0">

piali
 
T

teemteem

New member
<img src="i/expressions/moon.gif" border="0">Hello everyone,
<br />i am new to this forum . I am a 31-year-old with mild CF.(pancreatic sufficient).I am colonized with PA and other multi drug bugs. I have a port for IV thrapy, which mostly i manage alone at home.
<br />But i am not very junky always and more or less stable.
<br />Recently i am having weight issues and feeding problems. My Pulmo thinks i will benefit from PEG tube.
<br />I live in India where for most people(including doctors), CF are just two alphabets. We have no CF clinics, CF doctors, Nurses,Nutritionist n even diagnostic facility. I am still suspected with CF , since we dont have sweat test /genetic test facility in my city( a metro city).
<br />
<br />PEG tube is not very common over here and CF is a little-known condition. i am in dire need of information. Almost everyone who heard about it tried to dissuade me against the surgery since it is an artificial process n they cant understand why i cant eat sufficienly thru mouth!!The Cf issues are hard to explain specially to those doctors who have hardly heard the name and for whom CF is just two alphabets!!
<br />But i trust my Pulmo ,who has practiced in one of UK's largest transplant centre and cared for CFers for long.So i stopped listening to others. i trust my Doctor completely.
<br />
<br />Since many of you must have gone thru this surgery and maintaining a G Tube, your exp n suggestions wud b very useful to me.
<br />I wanted to know
<br />
<br />1 What to expect after the surgery- i mean post op issues like pain, nausea,bowel problems,cough n so on.Can we cough effectively after surgery?else how do we get rid of the junk?i am not very junky always ,but mornings are bad mostly.
<br />can i have the button device right from the beginning instaed of tube hanging from tummy?
<br />when can i take bath after surgery?
<br />
<br />2 Is maintaining a PEG single handedly a big issue?it is very troublesome?
<br />
<br />3 Can i eat normally with G tube in or do i have to be mainly tube dependant?
<br />
<br />4 does the tube need a daily maintainance, even when not used?
<br />
<br />5 is a bolus feed ok with tube?is a gravity feed safe at night since i cannot afford the feeding pump worth 1.5 lakh n it is to be paid from our pocket.So i have to choose between a bolus feed or gravity feed. My doc feels i should feed whole night, beside the 3-time bolus feeds. m not too comfortable with a tube feed all night when i am alone at home with no support,medical cover/nurses.
<br />
<br />6 what r the signs of trouble with the tube?
<br />
<br />thank you so much for your inputs n sharing your experiences,you can visit my site
<br />www.caringbridge.org/visit/pialimukherjee
<br />to post your comments n watch my youtube video on CF awareness at
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=kqV1IU5YS0I
">http://www.youtube.com/watch?v=kqV1IU5YS0I
</a><br />thanks n best wishes<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />piali
 
M

mariahsmommy

New member
My daughter doesn't have a PEG tube, but she she does have a mickey button. You can look it up online to see the difference. She has had this since she was about a month old. It has been a great thing for her.

The surgery recovery was fairly mild. She didn't seem to have any extra issues with it.
You should be able to eat normally and just supplement with the tube.
I don't know about a peg, but I just clean Mariah's mickey when she takes a bath.
Is there any type of assistance program you can look into for coverage of a feeding pump for overnight feeds? You shouldn't worry about issues with overnight feeds, just start slow and work your way up.
And if there is no way you can get the pump, maybe you could figure out your calorie needs, and divide it into 6 meals a day, and eat what you want and supplement the other times.
I blend up real food for my daughter using a Vitamix, it is less expensive than the tube feeding formulas.
Good luck to you.
 
M

mariahsmommy

New member
My daughter doesn't have a PEG tube, but she she does have a mickey button. You can look it up online to see the difference. She has had this since she was about a month old. It has been a great thing for her.

The surgery recovery was fairly mild. She didn't seem to have any extra issues with it.
You should be able to eat normally and just supplement with the tube.
I don't know about a peg, but I just clean Mariah's mickey when she takes a bath.
Is there any type of assistance program you can look into for coverage of a feeding pump for overnight feeds? You shouldn't worry about issues with overnight feeds, just start slow and work your way up.
And if there is no way you can get the pump, maybe you could figure out your calorie needs, and divide it into 6 meals a day, and eat what you want and supplement the other times.
I blend up real food for my daughter using a Vitamix, it is less expensive than the tube feeding formulas.
Good luck to you.
 
M

mariahsmommy

New member
My daughter doesn't have a PEG tube, but she she does have a mickey button. You can look it up online to see the difference. She has had this since she was about a month old. It has been a great thing for her.
<br />
<br />The surgery recovery was fairly mild. She didn't seem to have any extra issues with it.
<br />You should be able to eat normally and just supplement with the tube.
<br />I don't know about a peg, but I just clean Mariah's mickey when she takes a bath.
<br />Is there any type of assistance program you can look into for coverage of a feeding pump for overnight feeds? You shouldn't worry about issues with overnight feeds, just start slow and work your way up.
<br />And if there is no way you can get the pump, maybe you could figure out your calorie needs, and divide it into 6 meals a day, and eat what you want and supplement the other times.
<br />I blend up real food for my daughter using a Vitamix, it is less expensive than the tube feeding formulas.
<br />Good luck to you.
 
M

Mommafirst

Guest
My daughter is pancreatic sufficient, but cannot gain weight on her own. She eats plenty, but can't gain. She has had a feeding tube for two years.

She went right to a button, vs. the peg. The recovery wasn't too awful, though she did have a lot extra reflux and constipation issues for several months. Now things are great.

We have a pump, but I don't think a bolus would be a problem. You could do a can or two before you go to bed and a can or two on waking.

Good luck, it was a very good decision for us.
 
M

Mommafirst

Guest
My daughter is pancreatic sufficient, but cannot gain weight on her own. She eats plenty, but can't gain. She has had a feeding tube for two years.

She went right to a button, vs. the peg. The recovery wasn't too awful, though she did have a lot extra reflux and constipation issues for several months. Now things are great.

We have a pump, but I don't think a bolus would be a problem. You could do a can or two before you go to bed and a can or two on waking.

Good luck, it was a very good decision for us.
 
M

Mommafirst

Guest
My daughter is pancreatic sufficient, but cannot gain weight on her own. She eats plenty, but can't gain. She has had a feeding tube for two years.
<br />
<br />She went right to a button, vs. the peg. The recovery wasn't too awful, though she did have a lot extra reflux and constipation issues for several months. Now things are great.
<br />
<br />We have a pump, but I don't think a bolus would be a problem. You could do a can or two before you go to bed and a can or two on waking.
<br />
<br />Good luck, it was a very good decision for us.
 
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