CF Trials For Digestion Too?

NoExcuses

New member
i just got my gallbladder removed....

but yes the liver can be affected. some need liver transplants. but this is pretty small compared to those who have lung issues....
 
6

65rosessamurai

Guest
Just had to laugh, Sue...I'm sure if they had enough volunteers turning in their 'samples', it'd amount to 'something' (LOL!)

Though the lungs ARE a major factor, I know a friend who died from Liver Cirroisis, not lung related. And, the liver IS part of the digestive system, which also is related to the malnutrition problem, so it would make sense for some part of the trial 'funds' to go towards "MORE EFFECTIVE" methods for proper digestion.

Malabsorption for CF'rs is like this...If you ate 1,000mg of Vitamin K, for example, the body may only absorb half of that, or perhaps less. If more effective medications were available, then more of the vitamins would be absorbed, thus perhaps a chain reaction to the rest of the digestive system working more efficiently.
Just my opinion, of course...
 
6

65rosessamurai

Guest
Just had to laugh, Sue...I'm sure if they had enough volunteers turning in their 'samples', it'd amount to 'something' (LOL!)

Though the lungs ARE a major factor, I know a friend who died from Liver Cirroisis, not lung related. And, the liver IS part of the digestive system, which also is related to the malnutrition problem, so it would make sense for some part of the trial 'funds' to go towards "MORE EFFECTIVE" methods for proper digestion.

Malabsorption for CF'rs is like this...If you ate 1,000mg of Vitamin K, for example, the body may only absorb half of that, or perhaps less. If more effective medications were available, then more of the vitamins would be absorbed, thus perhaps a chain reaction to the rest of the digestive system working more efficiently.
Just my opinion, of course...
 
6

65rosessamurai

Guest
Just had to laugh, Sue...I'm sure if they had enough volunteers turning in their 'samples', it'd amount to 'something' (LOL!)

Though the lungs ARE a major factor, I know a friend who died from Liver Cirroisis, not lung related. And, the liver IS part of the digestive system, which also is related to the malnutrition problem, so it would make sense for some part of the trial 'funds' to go towards "MORE EFFECTIVE" methods for proper digestion.

Malabsorption for CF'rs is like this...If you ate 1,000mg of Vitamin K, for example, the body may only absorb half of that, or perhaps less. If more effective medications were available, then more of the vitamins would be absorbed, thus perhaps a chain reaction to the rest of the digestive system working more efficiently.
Just my opinion, of course...
 

Foody

New member
I agree that the lungs are the most important factor in terms of longevity. However, I believe the lungs, digestive system, sinuses and skin are all in the same acupuncture meridian, thus the health or balance of one affects the health and balance of the others. This is rarely looked at in terms of studies (at least as far as I have found). How much does inflammation in the gut affect the lungs and sinuses over time? (and vice versa) Can improving and reducing inflammation in the gut positively affect the lungs (and vice versa)? I believe it is connected and perhaps looking at the inter-relatedness of these systems could open new understanding about disease progression. Science tends to use only reductionist methods (isolate this system, this cell, this nutrient) when you can't really look at one thing without the rest. I think way more could be done to create digestive health and I wonder very much how this would affect the lungs and other systems.

Just some thoughts.
 

Foody

New member
I agree that the lungs are the most important factor in terms of longevity. However, I believe the lungs, digestive system, sinuses and skin are all in the same acupuncture meridian, thus the health or balance of one affects the health and balance of the others. This is rarely looked at in terms of studies (at least as far as I have found). How much does inflammation in the gut affect the lungs and sinuses over time? (and vice versa) Can improving and reducing inflammation in the gut positively affect the lungs (and vice versa)? I believe it is connected and perhaps looking at the inter-relatedness of these systems could open new understanding about disease progression. Science tends to use only reductionist methods (isolate this system, this cell, this nutrient) when you can't really look at one thing without the rest. I think way more could be done to create digestive health and I wonder very much how this would affect the lungs and other systems.

Just some thoughts.
 

Foody

New member
I agree that the lungs are the most important factor in terms of longevity. However, I believe the lungs, digestive system, sinuses and skin are all in the same acupuncture meridian, thus the health or balance of one affects the health and balance of the others. This is rarely looked at in terms of studies (at least as far as I have found). How much does inflammation in the gut affect the lungs and sinuses over time? (and vice versa) Can improving and reducing inflammation in the gut positively affect the lungs (and vice versa)? I believe it is connected and perhaps looking at the inter-relatedness of these systems could open new understanding about disease progression. Science tends to use only reductionist methods (isolate this system, this cell, this nutrient) when you can't really look at one thing without the rest. I think way more could be done to create digestive health and I wonder very much how this would affect the lungs and other systems.

Just some thoughts.
 

BlueTurtle

New member
...and do the new vitamins help the liver....I mean, they are better absorbed for weight gain...but does that positively affect the liver. Also, can the liver be protected. I know the gall bladder (with sludge/gallstones) affects the liver, hence why the gallbladder might be removed....thus affecting the liver more positively in some ways....does your liver get worse with age? or if you have liver enzyme issues...you can control them for the rest of your life?
 

BlueTurtle

New member
...and do the new vitamins help the liver....I mean, they are better absorbed for weight gain...but does that positively affect the liver. Also, can the liver be protected. I know the gall bladder (with sludge/gallstones) affects the liver, hence why the gallbladder might be removed....thus affecting the liver more positively in some ways....does your liver get worse with age? or if you have liver enzyme issues...you can control them for the rest of your life?
 

BlueTurtle

New member
...and do the new vitamins help the liver....I mean, they are better absorbed for weight gain...but does that positively affect the liver. Also, can the liver be protected. I know the gall bladder (with sludge/gallstones) affects the liver, hence why the gallbladder might be removed....thus affecting the liver more positively in some ways....does your liver get worse with age? or if you have liver enzyme issues...you can control them for the rest of your life?
 
2

2perfectboys

Guest
To your original question about gene therapy corrective digestive, I would say no. I beleive the gene therapy they are hoping to discover who be delivered through the luns. Not to say they couldn't also put it in a pill form to swallow, to help w/ digestive, but I don't even know if that would even be possible.

Actigall can not heal the liver, it can only control or slow destruction of it. I think the liver can have flare ups just like the lungs can. My son was on actigall at one time when it was found that he had some liver issues.

On a sidenote brought out in this thread about research studies for digestion, I do think they are conducting a fair number of research in this area. I think most docs would aknowledge that good nutrition goes hand in hand with lung function. I think good nutrition is the primary reason CF life expectancy jumped out of the infancy range. Development of the enzymes was a huge factor. OUr center this last summer was doing an intense study on a digestive enzymes and there have been studies done on drink supplements. Not sure about liver or diabetes, but I do think these are areas that need to be explored because the older CF people live, the more these are becoming issues.
 
2

2perfectboys

Guest
To your original question about gene therapy corrective digestive, I would say no. I beleive the gene therapy they are hoping to discover who be delivered through the luns. Not to say they couldn't also put it in a pill form to swallow, to help w/ digestive, but I don't even know if that would even be possible.

Actigall can not heal the liver, it can only control or slow destruction of it. I think the liver can have flare ups just like the lungs can. My son was on actigall at one time when it was found that he had some liver issues.

On a sidenote brought out in this thread about research studies for digestion, I do think they are conducting a fair number of research in this area. I think most docs would aknowledge that good nutrition goes hand in hand with lung function. I think good nutrition is the primary reason CF life expectancy jumped out of the infancy range. Development of the enzymes was a huge factor. OUr center this last summer was doing an intense study on a digestive enzymes and there have been studies done on drink supplements. Not sure about liver or diabetes, but I do think these are areas that need to be explored because the older CF people live, the more these are becoming issues.
 
2

2perfectboys

Guest
To your original question about gene therapy corrective digestive, I would say no. I beleive the gene therapy they are hoping to discover who be delivered through the luns. Not to say they couldn't also put it in a pill form to swallow, to help w/ digestive, but I don't even know if that would even be possible.

Actigall can not heal the liver, it can only control or slow destruction of it. I think the liver can have flare ups just like the lungs can. My son was on actigall at one time when it was found that he had some liver issues.

On a sidenote brought out in this thread about research studies for digestion, I do think they are conducting a fair number of research in this area. I think most docs would aknowledge that good nutrition goes hand in hand with lung function. I think good nutrition is the primary reason CF life expectancy jumped out of the infancy range. Development of the enzymes was a huge factor. OUr center this last summer was doing an intense study on a digestive enzymes and there have been studies done on drink supplements. Not sure about liver or diabetes, but I do think these are areas that need to be explored because the older CF people live, the more these are becoming issues.
 

Ender

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

I agree that the lungs are the most important factor in terms of longevity. However, I believe the lungs, digestive system, sinuses and skin are all in the same acupuncture meridian, thus the health or balance of one affects the health and balance of the others. This is rarely looked at in terms of studies (at least as far as I have found). How much does inflammation in the gut affect the lungs and sinuses over time? (and vice versa) Can improving and reducing inflammation in the gut positively affect the lungs (and vice versa)? I believe it is connected and perhaps looking at the inter-relatedness of these systems could open new understanding about disease progression. Science tends to use only reductionist methods (isolate this system, this cell, this nutrient) when you can't really look at one thing without the rest. I think way more could be done to create digestive health and I wonder very much how this would affect the lungs and other systems.



Just some thoughts.</end quote></div>

I think digestive health plays a huge part in the overall prognosis of cf. It seems that the best outcomes are of those that have an intact digestive tract....and are of normal wieght.

I think it is part of the progressive nature of this disease. We are start off relatively healthy. When we start getting infections, we need more nutrients to keep up our immune system. However, since our digestion is impaired, we start leeching it from other sources, thus creating dificiences and such. People that do not have cf and are chonically inflammed, have an overactive immunes system also show some of the same signs of cf (insulin resistance, vitamin deficiencies, wieight loss etc).

However, there are at least two new enzyme therapies comming out that look very promising, so i am very excited about that.
 

Ender

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

I agree that the lungs are the most important factor in terms of longevity. However, I believe the lungs, digestive system, sinuses and skin are all in the same acupuncture meridian, thus the health or balance of one affects the health and balance of the others. This is rarely looked at in terms of studies (at least as far as I have found). How much does inflammation in the gut affect the lungs and sinuses over time? (and vice versa) Can improving and reducing inflammation in the gut positively affect the lungs (and vice versa)? I believe it is connected and perhaps looking at the inter-relatedness of these systems could open new understanding about disease progression. Science tends to use only reductionist methods (isolate this system, this cell, this nutrient) when you can't really look at one thing without the rest. I think way more could be done to create digestive health and I wonder very much how this would affect the lungs and other systems.



Just some thoughts.</end quote></div>

I think digestive health plays a huge part in the overall prognosis of cf. It seems that the best outcomes are of those that have an intact digestive tract....and are of normal wieght.

I think it is part of the progressive nature of this disease. We are start off relatively healthy. When we start getting infections, we need more nutrients to keep up our immune system. However, since our digestion is impaired, we start leeching it from other sources, thus creating dificiences and such. People that do not have cf and are chonically inflammed, have an overactive immunes system also show some of the same signs of cf (insulin resistance, vitamin deficiencies, wieight loss etc).

However, there are at least two new enzyme therapies comming out that look very promising, so i am very excited about that.
 

Ender

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

I agree that the lungs are the most important factor in terms of longevity. However, I believe the lungs, digestive system, sinuses and skin are all in the same acupuncture meridian, thus the health or balance of one affects the health and balance of the others. This is rarely looked at in terms of studies (at least as far as I have found). How much does inflammation in the gut affect the lungs and sinuses over time? (and vice versa) Can improving and reducing inflammation in the gut positively affect the lungs (and vice versa)? I believe it is connected and perhaps looking at the inter-relatedness of these systems could open new understanding about disease progression. Science tends to use only reductionist methods (isolate this system, this cell, this nutrient) when you can't really look at one thing without the rest. I think way more could be done to create digestive health and I wonder very much how this would affect the lungs and other systems.



Just some thoughts.</end quote></div>

I think digestive health plays a huge part in the overall prognosis of cf. It seems that the best outcomes are of those that have an intact digestive tract....and are of normal wieght.

I think it is part of the progressive nature of this disease. We are start off relatively healthy. When we start getting infections, we need more nutrients to keep up our immune system. However, since our digestion is impaired, we start leeching it from other sources, thus creating dificiences and such. People that do not have cf and are chonically inflammed, have an overactive immunes system also show some of the same signs of cf (insulin resistance, vitamin deficiencies, wieight loss etc).

However, there are at least two new enzyme therapies comming out that look very promising, so i am very excited about that.
 

BlueTurtle

New member
Two daughter with CF.

I've heard about the enzyme therapies...do they correct a problem or do they supply the body what it needs to absorbo nutrients.?
 
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