Daily Symptoms of CF

D

dancingsparrow

New member
<SPAN lang=EN>
<P>My boyfriend of one year has CF and is in great health at 24. His CF is quite severe, resulting in dozens of surgeries from birth and into his teens. He eats plenty, uses he vest daily and is extremely active at work and at play. His PFTs are over 100 and have been consistently for years. </P>
<P>My question pertains to his daily bodily functions. He has had terrible gas since before he can remember. I have been wondering for a while if it was common in all those who have CF or if its something he is consuming. All his life he was raised to eat red meat...a lot of it. Every day, for 1 or more meals on top of eating beef jerky for snacks everyday. I know healthy humans get really smelly gas after eating red meat. I figured if that wasn't the source, it may just be making a common CF symptom worse. </P>
<P>I also know he has to consume enzymes in the pill form before every meal so his food actually digests since his pancreas doesn't work at all. Could these be the culprit, regardless of the beef? </P>
<P>I've casually talked to him about trying a test fun of no beef for a week or two to see if it helped. I don't know if he will try in earnest since I am not the sort of woman to make him do something he doesn't want to. </P>
<P>I would really appreciate any opinions or advice. Im a every understanding woman from a family with a medical background on both sides, but this is entirely new territory for me. I just want him to be as comfortable and happy as possible. </P>
<P> </P>
<P>Thank you!</P></SPAN>
 
D

dancingsparrow

New member
<SPAN lang=EN>
<P>My boyfriend of one year has CF and is in great health at 24. His CF is quite severe, resulting in dozens of surgeries from birth and into his teens. He eats plenty, uses he vest daily and is extremely active at work and at play. His PFTs are over 100 and have been consistently for years. </P>
<P>My question pertains to his daily bodily functions. He has had terrible gas since before he can remember. I have been wondering for a while if it was common in all those who have CF or if its something he is consuming. All his life he was raised to eat red meat...a lot of it. Every day, for 1 or more meals on top of eating beef jerky for snacks everyday. I know healthy humans get really smelly gas after eating red meat. I figured if that wasn't the source, it may just be making a common CF symptom worse. </P>
<P>I also know he has to consume enzymes in the pill form before every meal so his food actually digests since his pancreas doesn't work at all. Could these be the culprit, regardless of the beef? </P>
<P>I've casually talked to him about trying a test fun of no beef for a week or two to see if it helped. I don't know if he will try in earnest since I am not the sort of woman to make him do something he doesn't want to. </P>
<P>I would really appreciate any opinions or advice. Im a every understanding woman from a family with a medical background on both sides, but this is entirely new territory for me. I just want him to be as comfortable and happy as possible. </P>
<P></P>
<P>Thank you!</P></SPAN>
 
D

dancingsparrow

New member
<SPAN lang=EN>
<P>My boyfriend of one year has CF and is in great health at 24. His CF is quite severe, resulting in dozens of surgeries from birth and into his teens. He eats plenty, uses he vest daily and is extremely active at work and at play. His PFTs are over 100 and have been consistently for years. </P>
<P>My question pertains to his daily bodily functions. He has had terrible gas since before he can remember. I have been wondering for a while if it was common in all those who have CF or if its something he is consuming. All his life he was raised to eat red meat...a lot of it. Every day, for 1 or more meals on top of eating beef jerky for snacks everyday. I know healthy humans get really smelly gas after eating red meat. I figured if that wasn't the source, it may just be making a common CF symptom worse. </P>
<P>I also know he has to consume enzymes in the pill form before every meal so his food actually digests since his pancreas doesn't work at all. Could these be the culprit, regardless of the beef? </P>
<P>I've casually talked to him about trying a test fun of no beef for a week or two to see if it helped. I don't know if he will try in earnest since I am not the sort of woman to make him do something he doesn't want to. </P>
<P>I would really appreciate any opinions or advice. Im a every understanding woman from a family with a medical background on both sides, but this is entirely new territory for me. I just want him to be as comfortable and happy as possible. </P>
<P></P>
<P>Thank you!</P></SPAN>
 
H

hmw

New member
Gas is definitely a 'cf thing.' :) People in general get gas from any number of foods... high fiber, high fat, you name it. People with CF are especially prone to it (some worse than others); unless he's specifically told you he thinks the beef is causing it it's unlikely to be one particular food.

Re. the meat... with dietary recommendations what they are today, it can be pretty shocking to look at what a person with CF consumes day in and day out. However~ calorie needs are increased in those with cf. Even with enzymes, maintaining weight can be a real problem without consuming extra calories (sometimes up to 3x the amount a typical person would need to take in.) Meat is a great source of concentrated fat and protein when it comes to this~ if you need double the calories everyone else does just to maintain a healthy weight, you need high calorie choices to make this doable.

Re. the enzymes having an effect- the gas would be much worse without them, not to mention many other digestive symptoms. At times, switching enzymes is necessary if someone is having distressing symptoms (cramps, diarrhea, malabsorption, difficulty keeping on weight/growing in the case of a child, etc) but he knows his body in this regard and whether or not he's doing well overall on whatever enzyme he is taking. There are only 3 different enzymes to choose from and someone with cf needs them for life- so a lot of care is usually taken before deciding to change them.

Welcome and we're glad to answer any other questions you have. :)
 
H

hmw

New member
Gas is definitely a 'cf thing.' :) People in general get gas from any number of foods... high fiber, high fat, you name it. People with CF are especially prone to it (some worse than others); unless he's specifically told you he thinks the beef is causing it it's unlikely to be one particular food.

Re. the meat... with dietary recommendations what they are today, it can be pretty shocking to look at what a person with CF consumes day in and day out. However~ calorie needs are increased in those with cf. Even with enzymes, maintaining weight can be a real problem without consuming extra calories (sometimes up to 3x the amount a typical person would need to take in.) Meat is a great source of concentrated fat and protein when it comes to this~ if you need double the calories everyone else does just to maintain a healthy weight, you need high calorie choices to make this doable.

Re. the enzymes having an effect- the gas would be much worse without them, not to mention many other digestive symptoms. At times, switching enzymes is necessary if someone is having distressing symptoms (cramps, diarrhea, malabsorption, difficulty keeping on weight/growing in the case of a child, etc) but he knows his body in this regard and whether or not he's doing well overall on whatever enzyme he is taking. There are only 3 different enzymes to choose from and someone with cf needs them for life- so a lot of care is usually taken before deciding to change them.

Welcome and we're glad to answer any other questions you have. :)
 
H

hmw

New member
Gas is definitely a 'cf thing.' :) People in general get gas from any number of foods... high fiber, high fat, you name it. People with CF are especially prone to it (some worse than others); unless he's specifically told you he thinks the beef is causing it it's unlikely to be one particular food.
<br />
<br />Re. the meat... with dietary recommendations what they are today, it can be pretty shocking to look at what a person with CF consumes day in and day out. However~ calorie needs are increased in those with cf. Even with enzymes, maintaining weight can be a real problem without consuming extra calories (sometimes up to 3x the amount a typical person would need to take in.) Meat is a great source of concentrated fat and protein when it comes to this~ if you need double the calories everyone else does just to maintain a healthy weight, you need high calorie choices to make this doable.
<br />
<br />Re. the enzymes having an effect- the gas would be much worse without them, not to mention many other digestive symptoms. At times, switching enzymes is necessary if someone is having distressing symptoms (cramps, diarrhea, malabsorption, difficulty keeping on weight/growing in the case of a child, etc) but he knows his body in this regard and whether or not he's doing well overall on whatever enzyme he is taking. There are only 3 different enzymes to choose from and someone with cf needs them for life- so a lot of care is usually taken before deciding to change them.
<br />
<br />Welcome and we're glad to answer any other questions you have. :)
 
H

Havoc

New member
One of the things that seems to make a difference with me is a proton pump inhibitor (like prilosec) in the morning, 20 mins before breakfast. The other is to cut out a lot of simple carbs. Sugars, high-starch foods etc.

Other factors can make a difference, eating more slowly, for example. Cutting out a lot of carbonated beverages can help. Make changes one at a time and see what makes the biggest difference. It's often difficult to break eating habits which have grown over your lifetime. Changing one thing can be manageable.
 
H

Havoc

New member
One of the things that seems to make a difference with me is a proton pump inhibitor (like prilosec) in the morning, 20 mins before breakfast. The other is to cut out a lot of simple carbs. Sugars, high-starch foods etc.

Other factors can make a difference, eating more slowly, for example. Cutting out a lot of carbonated beverages can help. Make changes one at a time and see what makes the biggest difference. It's often difficult to break eating habits which have grown over your lifetime. Changing one thing can be manageable.
 
H

Havoc

New member
One of the things that seems to make a difference with me is a proton pump inhibitor (like prilosec) in the morning, 20 mins before breakfast. The other is to cut out a lot of simple carbs. Sugars, high-starch foods etc.
<br />
<br />Other factors can make a difference, eating more slowly, for example. Cutting out a lot of carbonated beverages can help. Make changes one at a time and see what makes the biggest difference. It's often difficult to break eating habits which have grown over your lifetime. Changing one thing can be manageable.
 
D

dancingsparrow

New member
Yes, he eats a good 8k-12k calories a day depending on his activities. There have been weird weeks where nothing in diet or activity changed but he'd just drop 5, 10, or once 27 lbs in a matter of days. His diet is varied for the most part but he eats carbs and meats more than the heathier stuff, but heathly stuff doesnt have calories like grains, meats and eggs.
His gas just really bothers him and everyone around him, whether it be strangers or familiars.
 
D

dancingsparrow

New member
Yes, he eats a good 8k-12k calories a day depending on his activities. There have been weird weeks where nothing in diet or activity changed but he'd just drop 5, 10, or once 27 lbs in a matter of days. His diet is varied for the most part but he eats carbs and meats more than the heathier stuff, but heathly stuff doesnt have calories like grains, meats and eggs.
His gas just really bothers him and everyone around him, whether it be strangers or familiars.
 
D

dancingsparrow

New member
Yes, he eats a good 8k-12k calories a day depending on his activities. There have been weird weeks where nothing in diet or activity changed but he'd just drop 5, 10, or once 27 lbs in a matter of days. His diet is varied for the most part but he eats carbs and meats more than the heathier stuff, but heathly stuff doesnt have calories like grains, meats and eggs.
<br />His gas just really bothers him and everyone around him, whether it be strangers or familiars.
 
B

bethylove

Guest
I noticed a dramatic change in my frequency of 'bad gas' days when I switched from the old Pancrease enzymes to creon. If I remember to take my creon with anything and everything I can go weeks and weeks without getting "CF gas" I'll have some gas here and there but it sure doesn't stink to high heaven anymore! Maybe he should look into switching enzymes.

I never thought my old enzymes weren't working, so enzymes can be tricky.
 
B

bethylove

Guest
I noticed a dramatic change in my frequency of 'bad gas' days when I switched from the old Pancrease enzymes to creon. If I remember to take my creon with anything and everything I can go weeks and weeks without getting "CF gas" I'll have some gas here and there but it sure doesn't stink to high heaven anymore! Maybe he should look into switching enzymes.

I never thought my old enzymes weren't working, so enzymes can be tricky.
 
B

bethylove

Guest
I noticed a dramatic change in my frequency of 'bad gas' days when I switched from the old Pancrease enzymes to creon. If I remember to take my creon with anything and everything I can go weeks and weeks without getting "CF gas" I'll have some gas here and there but it sure doesn't stink to high heaven anymore! Maybe he should look into switching enzymes.
<br />
<br />I never thought my old enzymes weren't working, so enzymes can be tricky.
 
I

imported_Momto2

New member
Yup, gas is a CF thing. I do better when I eat mostly fish, chicken, turkey, venison for meats. So low fat stuff, but in large quantities. Also avoid dairy and fats. A lot of carbo stuff give me gas too. OK, seriosly, just about EVERYTHING gives me gas, its just a matter of how much...... *grin* Miralax a few times a week helps out, as does prilosec. I'm sure I am not the only CFer who has developed rather elaborate strategies for getting rid of "excess flatus" in social situations......
 
I

imported_Momto2

New member
Yup, gas is a CF thing. I do better when I eat mostly fish, chicken, turkey, venison for meats. So low fat stuff, but in large quantities. Also avoid dairy and fats. A lot of carbo stuff give me gas too. OK, seriosly, just about EVERYTHING gives me gas, its just a matter of how much...... *grin* Miralax a few times a week helps out, as does prilosec. I'm sure I am not the only CFer who has developed rather elaborate strategies for getting rid of "excess flatus" in social situations......
 
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