Pancreatic sufficient

[gunelle]

Hi, I'm pancreatic sufficient, and do not need to take enzymeres and have no problem (no problem at all) to gain weight. I'm wondering now, if it will stay that way "always".
Have any of you been PS and eventually needed to take enzymeres and such?
Thanks
G.

 

[gunelle]

Hi, I'm pancreatic sufficient, and do not need to take enzymeres and have no problem (no problem at all) to gain weight. I'm wondering now, if it will stay that way "always".
Have any of you been PS and eventually needed to take enzymeres and such?
Thanks
G.

 

[SIcklyhatED]

Hello,
While I'm not exactly PS, I'd say I'm pretty darn close. Odly enough my pancreas seems to have gotten better as I've gotten older (likewise m lungs were great, but are taking the heat now). As a kid, god forbid I forgot enzymes because I'd be hurting the next day. Now, I can miss an entire day and nothing happens (or so it seems). All I can say is that I doubt you could stay like that forever. Eventually organs will decide to quit on us, but maybe that'll be when your 95, who knows. It's a fickle disease and God only knows how it'll affect you in years to come.

 

[SIcklyhatED]

Hello,
While I'm not exactly PS, I'd say I'm pretty darn close. Odly enough my pancreas seems to have gotten better as I've gotten older (likewise m lungs were great, but are taking the heat now). As a kid, god forbid I forgot enzymes because I'd be hurting the next day. Now, I can miss an entire day and nothing happens (or so it seems). All I can say is that I doubt you could stay like that forever. Eventually organs will decide to quit on us, but maybe that'll be when your 95, who knows. It's a fickle disease and God only knows how it'll affect you in years to come.

 

[Printer]

Before I say anythink let me point out that everyone with CF has a different situation. I'm 72 with FEV1 in the mid 70s. That is not "normal". Five years ago I was taking 5 Creon 20 (and had been for many years) with each meal and could even skip a dose. I was having digestive problems and had the opportunity to see one of the leading Gastro CF Researchers in the world. After a CAT scan and an MRI determined that I was 100% PI, we went into the trial and error program in order to determine my optimim dosage. We setteled on 10 Creon 24 with each meal. PI is definatly a progressive issue, much like PFT's.

To answer your question, sure it is possible that you may never need enzyme suppliments.

Bill

 

[Printer]

Before I say anythink let me point out that everyone with CF has a different situation. I'm 72 with FEV1 in the mid 70s. That is not "normal". Five years ago I was taking 5 Creon 20 (and had been for many years) with each meal and could even skip a dose. I was having digestive problems and had the opportunity to see one of the leading Gastro CF Researchers in the world. After a CAT scan and an MRI determined that I was 100% PI, we went into the trial and error program in order to determine my optimim dosage. We setteled on 10 Creon 24 with each meal. PI is definatly a progressive issue, much like PFT's.

To answer your question, sure it is possible that you may never need enzyme suppliments.

Bill

 

[missT]

Hi, I am 42 years old and have been panc suff my entire life. I have never had to take enzymes or anything like that. I just had a big drop in weight (like 15 lbs) and went to a gastro dr thinking that it was a pancreas issue...turned out not to be. It was my due to stress and my good old fashioned crappy lungs. So to answer your question from my experience---I believe that we stay panc suff.

 

[missT]

Hi, I am 42 years old and have been panc suff my entire life. I have never had to take enzymes or anything like that. I just had a big drop in weight (like 15 lbs) and went to a gastro dr thinking that it was a pancreas issue...turned out not to be. It was my due to stress and my good old fashioned crappy lungs. So to answer your question from my experience---I believe that we stay panc suff.

 

[imported_Momto2]

Like Bill said, we are very much individuals when it comes to CF. I was completely PI as a kid, trouble keeping weight on even with scads of enzymes, severe failure to thrive. When I was around 20/21, something changed. The docs have hypothesized that my GI has become colonized with the bacteria that I need to do the job for me. I am still testing completely PI, but I have not taken enzymes in 20 years, have normal poo, and if anything, have trouble keeping weight OFF. Luckily my CF doc is off the creed "if it aint broke, dont mess with it". Weird stuff happens. I have heard though, from CF doc, that PI can be and is often progressive.

 

[imported_Momto2]

Like Bill said, we are very much individuals when it comes to CF. I was completely PI as a kid, trouble keeping weight on even with scads of enzymes, severe failure to thrive. When I was around 20/21, something changed. The docs have hypothesized that my GI has become colonized with the bacteria that I need to do the job for me. I am still testing completely PI, but I have not taken enzymes in 20 years, have normal poo, and if anything, have trouble keeping weight OFF. Luckily my CF doc is off the creed "if it aint broke, dont mess with it". Weird stuff happens. I have heard though, from CF doc, that PI can be and is often progressive.

 

[Brad]

I am also pancreatic sufficient , I have never had a problem gaining weight.
I was DX at 8 and I am now 55.

 

[Brad]

I am also pancreatic sufficient , I have never had a problem gaining weight.
I was DX at 8 and I am now 55.

 

[ymikhale]

From what I know, there is no wayu to know. My dd started off with severe pancreatic insufficiency but ater jumpstarting the pancreas with creon, she does not need it anymore. So go figure.

 

[ymikhale]

From what I know, there is no wayu to know. My dd started off with severe pancreatic insufficiency but ater jumpstarting the pancreas with creon, she does not need it anymore. So go figure.

 

[Keepercjr]

I am PS and seem to be staying that way. I have some problems with digestion but I believe it is related to some sort of IBS and no gall bladder - not anything to do with my pancreas. I have no problem with weight and never had. Interestingly my brother who had the same mutations as me (obviously) was totally PI and had the worst time maintaining weight.

 

[Keepercjr]

I am PS and seem to be staying that way. I have some problems with digestion but I believe it is related to some sort of IBS and no gall bladder - not anything to do with my pancreas. I have no problem with weight and never had. Interestingly my brother who had the same mutations as me (obviously) was totally PI and had the worst time maintaining weight.

 

[MichaelL]

I was diagnosed at 34 and am pancreatic sufficient. My doctor told me it is possible, but unusual to become pancreatic insufficient. I was having digestive problems a few months ago, but they seem to have been caused by an IV antibiotic. No problems now.

 

[MichaelL]

I was diagnosed at 34 and am pancreatic sufficient. My doctor told me it is possible, but unusual to become pancreatic insufficient. I was having digestive problems a few months ago, but they seem to have been caused by an IV antibiotic. No problems now.

 

[leapling]

I am also pancreatic sufficient and at age 34 haven't had to take any enzymes to maintain my weight. I was diagnosed at age 12 and seem to have two uncommon gene mutations. I did have a case of acute pancreatitis last fall, and the doctors felt that it may have been caused by a blockage in some of the ducts, and they said that this can sometimes be the case with people who are not PI.

 

[leapling]

I am also pancreatic sufficient and at age 34 haven't had to take any enzymes to maintain my weight. I was diagnosed at age 12 and seem to have two uncommon gene mutations. I did have a case of acute pancreatitis last fall, and the doctors felt that it may have been caused by a blockage in some of the ducts, and they said that this can sometimes be the case with people who are not PI.