How did you know?

[DebbieS]

For those of you who said you were able to lower the amount of enzymes you take, how did you know you needed less? Some of you have even said you were able to stop using enzymes completely. But how did you know? I've been taking enzymes all my life. What would make me think I now need less or none at all?
I confess, I'm bewildered!

~~~~~~~~~~~~~~~~~~~~~~~~Debbie, diagnosed with CF at birth, intermittent CFRD, hypothyroid

 

[DebbieS]

For those of you who said you were able to lower the amount of enzymes you take, how did you know you needed less? Some of you have even said you were able to stop using enzymes completely. But how did you know? I've been taking enzymes all my life. What would make me think I now need less or none at all?
I confess, I'm bewildered!

~~~~~~~~~~~~~~~~~~~~~~~~Debbie, diagnosed with CF at birth, intermittent CFRD, hypothyroid

 

[Printer]

Debbie

It is a trial and error process. If you are not having any digestive issues now, begin to reduce your enzyme intake. I would suggest that you keep the reduction small 10% - 20%. Do this for a week and if you have no change in digestion (pain, gas, loose stools) reduce the enzyme intake again. Continue reducing untill it is a problem.

The same trial and error approach works, in reverse, for those who need to increase enzymes.

Bill

 

[Printer]

Debbie

It is a trial and error process. If you are not having any digestive issues now, begin to reduce your enzyme intake. I would suggest that you keep the reduction small 10% - 20%. Do this for a week and if you have no change in digestion (pain, gas, loose stools) reduce the enzyme intake again. Continue reducing untill it is a problem.

The same trial and error approach works, in reverse, for those who need to increase enzymes.

Bill

 

[imported_Momto2]

yup, trial and error. It also involved a bit of re-education and forgetfullness. I'd forget the enzymes sometimes, and take note of what I'd eaten and how my body reacted. Pretty soon I figured out that I did ever so much better with no fat or dairy in my diet and no enzymes. Then I reduced carbs and my poo's (sorry to be gross) normalized even more. The daily multitude of stomach aches and bloating decreased markedly. My doc was so shocked that he redid all the tests to make sure my pancreas wasnt functioning again. Nope, dead as a doornail still. But somehow, (they think its a delicate balance of gut bacteria) I have reached a happy medium.

Now, when I get a flu or go on oral antibiotics, things get a bit messed up. But it normalizes out very quickly now, within a matter of days.

 

[imported_Momto2]

yup, trial and error. It also involved a bit of re-education and forgetfullness. I'd forget the enzymes sometimes, and take note of what I'd eaten and how my body reacted. Pretty soon I figured out that I did ever so much better with no fat or dairy in my diet and no enzymes. Then I reduced carbs and my poo's (sorry to be gross) normalized even more. The daily multitude of stomach aches and bloating decreased markedly. My doc was so shocked that he redid all the tests to make sure my pancreas wasnt functioning again. Nope, dead as a doornail still. But somehow, (they think its a delicate balance of gut bacteria) I have reached a happy medium.

Now, when I get a flu or go on oral antibiotics, things get a bit messed up. But it normalizes out very quickly now, within a matter of days.

 

[AndyE1970]

Definitly trial and error, I am 41 years young and still trying to find the right combination, I love pizza and if I do not take my enzymes it does a number on me. Take too many and get backed up. Take to few and too loose (not try to be gross either.

Andy
married for 16 years and father of twin girls (girls age 9) through In Vitro. 61%

 

[AndyE1970]

Definitly trial and error, I am 41 years young and still trying to find the right combination, I love pizza and if I do not take my enzymes it does a number on me. Take too many and get backed up. Take to few and too loose (not try to be gross either.

Andy
married for 16 years and father of twin girls (girls age 9) through In Vitro. 61%

 

[Printer]

Andy:

Have you tried taking half of your enzymes at first bite and balance as you finish?

Bill

 

[Printer]

Andy:

Have you tried taking half of your enzymes at first bite and balance as you finish?

Bill

 

[dbtoo]

IMHO - it is being able to determine the amount of Fat you are ingesting into your diet. http://www.drugs.com/pro/creon.html Almost every CF doc will prescribe your enzymes based on your weight. As you get older, you can take more responsibility in determining your medical care. According to the FDA, you would need " ... less than 4,000 lipase units/g fat ingested per day." So, if you count the grams of fat you are getting in a meal, you can take the appropriate amount of enzymes. For instance, I don't take any with a low fat/high fiber bowl of cereal. The guesswork is where you have to figure out how much fat you take in a meal! (Especially when you eat at a restaurant.) If you eat at home, you can pretty much look at the labels and figure out how many fat grams you are having in a meal. This is ONLY an opinion and is not meant as a suggestion to alter your prescribed enzyme treatment. Talk with a doctor before deciding to change.

 

[dbtoo]

IMHO - it is being able to determine the amount of Fat you are ingesting into your diet. http://www.drugs.com/pro/creon.html Almost every CF doc will prescribe your enzymes based on your weight. As you get older, you can take more responsibility in determining your medical care. According to the FDA, you would need " ... less than 4,000 lipase units/g fat ingested per day." So, if you count the grams of fat you are getting in a meal, you can take the appropriate amount of enzymes. For instance, I don't take any with a low fat/high fiber bowl of cereal. The guesswork is where you have to figure out how much fat you take in a meal! (Especially when you eat at a restaurant.) If you eat at home, you can pretty much look at the labels and figure out how many fat grams you are having in a meal. This is ONLY an opinion and is not meant as a suggestion to alter your prescribed enzyme treatment. Talk with a doctor before deciding to change.

 

[Printer]

dbtoo

I weigh 154 lbs. I take 10 Creon 24 with every meal and snack. (24000 units X 50 = 1,200,000 units/day). How does that work out with your calculations?

Bill

 

[Printer]

dbtoo

I weigh 154 lbs. I take 10 Creon 24 with every meal and snack. (24000 units X 50 = 1,200,000 units/day). How does that work out with your calculations?

Bill

 

[AndyE1970]

Thanks Bill

I tried a lot of different ways, I do pretty good most of time, but I still every now and then get out of whack. I take only 3 creon 24 with big meals. 1-2 with snacks, I guess everyone is different.

Appreciate input Bill, Wow 72 years young, that is great. Great job, keep rolling. I was dx at 6 months

 

[AndyE1970]

Thanks Bill

I tried a lot of different ways, I do pretty good most of time, but I still every now and then get out of whack. I take only 3 creon 24 with big meals. 1-2 with snacks, I guess everyone is different.

Appreciate input Bill, Wow 72 years young, that is great. Great job, keep rolling. I was dx at 6 months

 

[dbtoo]

Not my calculations, Bill. It's the FDA's statements, not mine. High dosages of pancreatic supplement may lead to fibrosis colonopathy. <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1511547/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1511547/</a> <span>'More is not necessarily better'. Keep in mind, the purpose of enzymes is to treat Steatorrhea http://en.wikipedia.org/wiki/Steatorrhea - It's to break down the fats we eat, not toprocess the foods we eat.
<span>Every individual has different requirements. The fact that you are "complete pancreatic insufficiency" is most likely why you take so many pills. Your diet, is probably another reason. If you eat eggs and bacon cooked in butter rather than a high fiber muffin for breakfast, then you best have those 10 pills handy!
<span>Unfortunaetly, from my experience, most docs just prescribe enzymes based soley on your weight and do not consider the amount of fat you ingest. This is what was set by the <span>Cystic Fibrosis Foundation Consensus Conferences, and you don't go against what the CFF says unless you want to lose funding for your clinic!
<span>Everyone is different. The original poster asked how we made our choices to reduce. Educating myself on the medication was my first step, rather than blindly accept the doctors RX like I normally do. Realizing that I didn't require the same amount of liapase units for each meal was the second step. I didn't need to take any when I ate a bowl of cereal, but when I eat pizza, i need about 1 (24000 creon) per slice - and that even depends on who I buy the pizza from.
<span>{mmmmm... eggs and bacon...... i can smell it cooking! <img title="Tongue out" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-tongue-out.gif" alt="Tongue out" border="0" /> }

 

[dbtoo]

Not my calculations, Bill. It's the FDA's statements, not mine. High dosages of pancreatic supplement may lead to fibrosis colonopathy. <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1511547/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1511547/</a> <span>'More is not necessarily better'. Keep in mind, the purpose of enzymes is to treat Steatorrhea http://en.wikipedia.org/wiki/Steatorrhea - It's to break down the fats we eat, not toprocess the foods we eat.
<span>Every individual has different requirements. The fact that you are "complete pancreatic insufficiency" is most likely why you take so many pills. Your diet, is probably another reason. If you eat eggs and bacon cooked in butter rather than a high fiber muffin for breakfast, then you best have those 10 pills handy!
<span>Unfortunaetly, from my experience, most docs just prescribe enzymes based soley on your weight and do not consider the amount of fat you ingest. This is what was set by the <span>Cystic Fibrosis Foundation Consensus Conferences, and you don't go against what the CFF says unless you want to lose funding for your clinic!
<span>Everyone is different. The original poster asked how we made our choices to reduce. Educating myself on the medication was my first step, rather than blindly accept the doctors RX like I normally do. Realizing that I didn't require the same amount of liapase units for each meal was the second step. I didn't need to take any when I ate a bowl of cereal, but when I eat pizza, i need about 1 (24000 creon) per slice - and that even depends on who I buy the pizza from.
<span>{mmmmm... eggs and bacon...... i can smell it cooking! <img title="Tongue out" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-tongue-out.gif" alt="Tongue out" border="0" /> }

 

[Printer]

I will have my Gastro Doctor contact you for advise. He is busy tho.

He is a world renowned Cystic Fibrosis Researcher. He was a PRESENTER at the recent CFF Conference in California. He is also a MEDICAL ADVISOR to the President Obama Administration. That along with being in charge of research and being the Chair of the Gastro the department of one of Boston's largest Teaching Hospitals. Did I mention his affilitation with the Harvard Medical School.

I was dx at age 47 (1987), two years before "the gene" was discovered and after experincing ten years of pancreatitis and about seventy (70) hospitalizations. By that time my pancrease was severly damaged. I went many years believing abdominal pain was part of CF. In 1999 a friend in the medical field introduced me to my Gastrointeroligist.

My dosage was determined after a CAT SCAN and after two MRI's. At that time it was determined that my pancrease DID NOT PRODUCE ANY ENZYMES. This was followed by an eight month, trial and error approach. This eight months included varing doses and changes in brands of enzymes. Trust me, my dosage is not based upon my WEIGHT.

In your case, dbtoo, your pancrease produces some amount of enzyme. I don't know if that is 99% of the amount that you need or 50% or 1%. That is why you still have the flexability that you do. That is why you have the flexabilty that you do have, no other reason.

If I were to eat one-quarter bowl of cereal without emzymes, I would experience pain. bloating, and gas. Once upon a time, I could eat a complete meal without taking enzymes.

Leave your phone number, my Doctor could benefit from your expertise.

Bill

 

[Printer]

I will have my Gastro Doctor contact you for advise. He is busy tho.

He is a world renowned Cystic Fibrosis Researcher. He was a PRESENTER at the recent CFF Conference in California. He is also a MEDICAL ADVISOR to the President Obama Administration. That along with being in charge of research and being the Chair of the Gastro the department of one of Boston's largest Teaching Hospitals. Did I mention his affilitation with the Harvard Medical School.

I was dx at age 47 (1987), two years before "the gene" was discovered and after experincing ten years of pancreatitis and about seventy (70) hospitalizations. By that time my pancrease was severly damaged. I went many years believing abdominal pain was part of CF. In 1999 a friend in the medical field introduced me to my Gastrointeroligist.

My dosage was determined after a CAT SCAN and after two MRI's. At that time it was determined that my pancrease DID NOT PRODUCE ANY ENZYMES. This was followed by an eight month, trial and error approach. This eight months included varing doses and changes in brands of enzymes. Trust me, my dosage is not based upon my WEIGHT.

In your case, dbtoo, your pancrease produces some amount of enzyme. I don't know if that is 99% of the amount that you need or 50% or 1%. That is why you still have the flexability that you do. That is why you have the flexabilty that you do have, no other reason.

If I were to eat one-quarter bowl of cereal without emzymes, I would experience pain. bloating, and gas. Once upon a time, I could eat a complete meal without taking enzymes.

Leave your phone number, my Doctor could benefit from your expertise.

Bill