Changing Enzymes

[Liza]

Does anyone know if a fecal study is required when you tell your doctor you want to try a higher dosage of enzymes? My 16yr old daughter has been having more frequent stomach issues over the last year. She's never had an obstruction or anything like that but has had to go in once to have golytly. Her doctor here, we moved to a different state last year, doesn't seem too concerned with addressing the issue of seemingly frequent problems, every few months. On our own we give her colace every day. Both CF and Primary doc. are OK with it. But still she will get backed up. Missing a day or two of school in the mean time. We asked once before to change to a high med., not increasing enzymes but changing. He changed the enzyme completely, she seemed to get more frequent stomach aches with that so we went back. He said, OK. No further investigation. She's currently taking 6 Pancrease MT16 w/meals and we want to try MT20's and possibly cut the number down. But the idea of a fecal study to do it is not appealing to her. You have to get into the mind set of a 16yr old girl here. We have talked about it and I may be able to convince her that it'd be worth a try but I don't know.

Any ideas or experience anyone?

Liza
(mom of 2teen girls w/CF)

 

[Liza]

Does anyone know if a fecal study is required when you tell your doctor you want to try a higher dosage of enzymes? My 16yr old daughter has been having more frequent stomach issues over the last year. She's never had an obstruction or anything like that but has had to go in once to have golytly. Her doctor here, we moved to a different state last year, doesn't seem too concerned with addressing the issue of seemingly frequent problems, every few months. On our own we give her colace every day. Both CF and Primary doc. are OK with it. But still she will get backed up. Missing a day or two of school in the mean time. We asked once before to change to a high med., not increasing enzymes but changing. He changed the enzyme completely, she seemed to get more frequent stomach aches with that so we went back. He said, OK. No further investigation. She's currently taking 6 Pancrease MT16 w/meals and we want to try MT20's and possibly cut the number down. But the idea of a fecal study to do it is not appealing to her. You have to get into the mind set of a 16yr old girl here. We have talked about it and I may be able to convince her that it'd be worth a try but I don't know.

Any ideas or experience anyone?

Liza
(mom of 2teen girls w/CF)

 

[Liza]

Does anyone know if a fecal study is required when you tell your doctor you want to try a higher dosage of enzymes? My 16yr old daughter has been having more frequent stomach issues over the last year. She's never had an obstruction or anything like that but has had to go in once to have golytly. Her doctor here, we moved to a different state last year, doesn't seem too concerned with addressing the issue of seemingly frequent problems, every few months. On our own we give her colace every day. Both CF and Primary doc. are OK with it. But still she will get backed up. Missing a day or two of school in the mean time. We asked once before to change to a high med., not increasing enzymes but changing. He changed the enzyme completely, she seemed to get more frequent stomach aches with that so we went back. He said, OK. No further investigation. She's currently taking 6 Pancrease MT16 w/meals and we want to try MT20's and possibly cut the number down. But the idea of a fecal study to do it is not appealing to her. You have to get into the mind set of a 16yr old girl here. We have talked about it and I may be able to convince her that it'd be worth a try but I don't know.

Any ideas or experience anyone?

Liza
(mom of 2teen girls w/CF)

 

[Anns]

Liza,<br>
My son switched a little over a year ago from Ultrase to Creon, b/c
of insurance coverage being much better for Creon, and had no
problems.  He has had a history of stomach problems and
constipation, but not for a year now since they increased his
dosage, he takes 3 Creon 20s w/ meal at 77 lbs.  I think there
is this fine guessing line w/ enzymes dosage.  I have come
close to having this do a fecal fat study, especially when he also
had to have golytly, but then it cleared up and we did not need
it.<br>

 

[Anns]

Liza,<br>
My son switched a little over a year ago from Ultrase to Creon, b/c
of insurance coverage being much better for Creon, and had no
problems.  He has had a history of stomach problems and
constipation, but not for a year now since they increased his
dosage, he takes 3 Creon 20s w/ meal at 77 lbs.  I think there
is this fine guessing line w/ enzymes dosage.  I have come
close to having this do a fecal fat study, especially when he also
had to have golytly, but then it cleared up and we did not need
it.<br>

 

[Anns]

Liza,<br>
My son switched a little over a year ago from Ultrase to Creon, b/c
of insurance coverage being much better for Creon, and had no
problems.  He has had a history of stomach problems and
constipation, but not for a year now since they increased his
dosage, he takes 3 Creon 20s w/ meal at 77 lbs.  I think there
is this fine guessing line w/ enzymes dosage.  I have come
close to having this do a fecal fat study, especially when he also
had to have golytly, but then it cleared up and we did not need
it.<br>

 

[CFHockeyMom]

Golytly? Haven't heard of that. Please elaborate. Thanks.

I think they typically change enzyme dosage based on weight so you shouldn't need a fecal study. May not be a bad idea to get one but like you said, the mindset of a 16yr old. It does seem odd that she's on MT-16's. Unless it's just because of the math. i.e. 6x16=86 so she'd need 4 3/10 MT-20's.

I'd guess that if she's dealing with constipation/back-ups then she probably doesn't need a higher dosage. Typically they increase the dosage when you're going too frequently (+3 times/day), the stool is too oily/bulky, and/or you're too gassy.

 

[CFHockeyMom]

Golytly? Haven't heard of that. Please elaborate. Thanks.

I think they typically change enzyme dosage based on weight so you shouldn't need a fecal study. May not be a bad idea to get one but like you said, the mindset of a 16yr old. It does seem odd that she's on MT-16's. Unless it's just because of the math. i.e. 6x16=86 so she'd need 4 3/10 MT-20's.

I'd guess that if she's dealing with constipation/back-ups then she probably doesn't need a higher dosage. Typically they increase the dosage when you're going too frequently (+3 times/day), the stool is too oily/bulky, and/or you're too gassy.

 

[CFHockeyMom]

Golytly? Haven't heard of that. Please elaborate. Thanks.

I think they typically change enzyme dosage based on weight so you shouldn't need a fecal study. May not be a bad idea to get one but like you said, the mindset of a 16yr old. It does seem odd that she's on MT-16's. Unless it's just because of the math. i.e. 6x16=86 so she'd need 4 3/10 MT-20's.

I'd guess that if she's dealing with constipation/back-ups then she probably doesn't need a higher dosage. Typically they increase the dosage when you're going too frequently (+3 times/day), the stool is too oily/bulky, and/or you're too gassy.

 

[Anns]

Claudette,<br>
Golytly is medication that cleans out your bowels.  They give
it to people that are having colonoscopys.  It is powder
formula and u can mix it with fluids like apple juice or IVs.
 It was used in my son, when he was having stomach pains and
even had intussuseption.  At one time he was one a glass every
day just to keep food moving through him and not giving him
constipation.  U would think increasing his enzymes would have
made him more constipated, but it didn't it stopped the belly
aches, because I don't think the old enzyme dose was breaking the
food down enough and sticking in his intestines,  I would
assume mucus can be in the intestines of a CFer just like it is in
the lungs and blocks the pancreas.<br>

 

[Anns]

Claudette,<br>
Golytly is medication that cleans out your bowels.  They give
it to people that are having colonoscopys.  It is powder
formula and u can mix it with fluids like apple juice or IVs.
 It was used in my son, when he was having stomach pains and
even had intussuseption.  At one time he was one a glass every
day just to keep food moving through him and not giving him
constipation.  U would think increasing his enzymes would have
made him more constipated, but it didn't it stopped the belly
aches, because I don't think the old enzyme dose was breaking the
food down enough and sticking in his intestines,  I would
assume mucus can be in the intestines of a CFer just like it is in
the lungs and blocks the pancreas.<br>

 

[Anns]

Claudette,<br>
Golytly is medication that cleans out your bowels.  They give
it to people that are having colonoscopys.  It is powder
formula and u can mix it with fluids like apple juice or IVs.
 It was used in my son, when he was having stomach pains and
even had intussuseption.  At one time he was one a glass every
day just to keep food moving through him and not giving him
constipation.  U would think increasing his enzymes would have
made him more constipated, but it didn't it stopped the belly
aches, because I don't think the old enzyme dose was breaking the
food down enough and sticking in his intestines,  I would
assume mucus can be in the intestines of a CFer just like it is in
the lungs and blocks the pancreas.<br>

 

[Ratatosk]

You can get what's called meconium equivilant. Stool gets backed up in the large intestine (colon), yet still have loose stools. DS had this problem when he was a few months old before we got his enzymes figured out.

 

[Ratatosk]

You can get what's called meconium equivilant. Stool gets backed up in the large intestine (colon), yet still have loose stools. DS had this problem when he was a few months old before we got his enzymes figured out.

 

[Ratatosk]

You can get what's called meconium equivilant. Stool gets backed up in the large intestine (colon), yet still have loose stools. DS had this problem when he was a few months old before we got his enzymes figured out.

 

[Liza]

Hi, Thanks for your input. She's been on Pancrease MT16's for gosh, about 10yrs now. Her dosage changed from 4 pills to 5 then 6 about five or six yrs ago. Terrible I can't remember. But she does take more enzymes than my 19yr old, she only takes 5 pills. I think one of the reasons her doctor tried her on the different brand of enzymes is because you can get free ADEKs with them. Which isn't an issue for us because we don't use ADEK, we buy the Source CF vitamins. That''s a whole other issue with their past nutritionist. Chewing vs Swallowing.

She will go normally, 1-2/day but then she'll start getting either nausea or belly pain, seemingly out of the blue. At 16 you surely can't be going in to check on things anymore ya know. Although, and she'd kill me if she knew I was discussing this, I have found floaters and told her that those were not "normal" in case she thought they were. At some point in her life she will have to know how to handle all this on her own. That point in time is coming up fast, she's a JR. in high school and hoping to be in a dorm in two years.

I know there is mucus that makes the stool sticky and not allowing it to pass or pass completely. And Claudette, I think you're right, that they increase the enzymes when they are going to frequently, greasy or bulky. But I think too, that if it's too bulky then there is the issue of not enough of one of those lipese's so that it's not bulky.

Aw, heck I don't know anymore. After 16yrs, I think I've forgotten or can't keep straight what they told/taught us all that time ago.

Creon was what he tried her on and she complained that it was giving her more troubles, so we changed back. That was last year.

Right now she takes one Colace every day. We've told her if she goes even one day without a bm that she is to let us know so that we can increase her dosage of colace until things clear up. Two days is the most we'll let her go without any movement. We've occasionally had to resort to using a fleets as well. Twice in the last year. Her doctor here gave her that option last year when she went in with dehydration from throwing up for two days. Again, how do you make sure a 16yr old is even doing it right? You'd think , well she sure as heck can't enjoying feeling like this.

Thanks you guys. I surely welcome anymore ideas.

Liza
(mom of 2teen girls w/CF)

 

[Liza]

Hi, Thanks for your input. She's been on Pancrease MT16's for gosh, about 10yrs now. Her dosage changed from 4 pills to 5 then 6 about five or six yrs ago. Terrible I can't remember. But she does take more enzymes than my 19yr old, she only takes 5 pills. I think one of the reasons her doctor tried her on the different brand of enzymes is because you can get free ADEKs with them. Which isn't an issue for us because we don't use ADEK, we buy the Source CF vitamins. That''s a whole other issue with their past nutritionist. Chewing vs Swallowing.

She will go normally, 1-2/day but then she'll start getting either nausea or belly pain, seemingly out of the blue. At 16 you surely can't be going in to check on things anymore ya know. Although, and she'd kill me if she knew I was discussing this, I have found floaters and told her that those were not "normal" in case she thought they were. At some point in her life she will have to know how to handle all this on her own. That point in time is coming up fast, she's a JR. in high school and hoping to be in a dorm in two years.

I know there is mucus that makes the stool sticky and not allowing it to pass or pass completely. And Claudette, I think you're right, that they increase the enzymes when they are going to frequently, greasy or bulky. But I think too, that if it's too bulky then there is the issue of not enough of one of those lipese's so that it's not bulky.

Aw, heck I don't know anymore. After 16yrs, I think I've forgotten or can't keep straight what they told/taught us all that time ago.

Creon was what he tried her on and she complained that it was giving her more troubles, so we changed back. That was last year.

Right now she takes one Colace every day. We've told her if she goes even one day without a bm that she is to let us know so that we can increase her dosage of colace until things clear up. Two days is the most we'll let her go without any movement. We've occasionally had to resort to using a fleets as well. Twice in the last year. Her doctor here gave her that option last year when she went in with dehydration from throwing up for two days. Again, how do you make sure a 16yr old is even doing it right? You'd think , well she sure as heck can't enjoying feeling like this.

Thanks you guys. I surely welcome anymore ideas.

Liza
(mom of 2teen girls w/CF)

 

[Liza]

Hi, Thanks for your input. She's been on Pancrease MT16's for gosh, about 10yrs now. Her dosage changed from 4 pills to 5 then 6 about five or six yrs ago. Terrible I can't remember. But she does take more enzymes than my 19yr old, she only takes 5 pills. I think one of the reasons her doctor tried her on the different brand of enzymes is because you can get free ADEKs with them. Which isn't an issue for us because we don't use ADEK, we buy the Source CF vitamins. That''s a whole other issue with their past nutritionist. Chewing vs Swallowing.

She will go normally, 1-2/day but then she'll start getting either nausea or belly pain, seemingly out of the blue. At 16 you surely can't be going in to check on things anymore ya know. Although, and she'd kill me if she knew I was discussing this, I have found floaters and told her that those were not "normal" in case she thought they were. At some point in her life she will have to know how to handle all this on her own. That point in time is coming up fast, she's a JR. in high school and hoping to be in a dorm in two years.

I know there is mucus that makes the stool sticky and not allowing it to pass or pass completely. And Claudette, I think you're right, that they increase the enzymes when they are going to frequently, greasy or bulky. But I think too, that if it's too bulky then there is the issue of not enough of one of those lipese's so that it's not bulky.

Aw, heck I don't know anymore. After 16yrs, I think I've forgotten or can't keep straight what they told/taught us all that time ago.

Creon was what he tried her on and she complained that it was giving her more troubles, so we changed back. That was last year.

Right now she takes one Colace every day. We've told her if she goes even one day without a bm that she is to let us know so that we can increase her dosage of colace until things clear up. Two days is the most we'll let her go without any movement. We've occasionally had to resort to using a fleets as well. Twice in the last year. Her doctor here gave her that option last year when she went in with dehydration from throwing up for two days. Again, how do you make sure a 16yr old is even doing it right? You'd think , well she sure as heck can't enjoying feeling like this.

Thanks you guys. I surely welcome anymore ideas.

Liza
(mom of 2teen girls w/CF)

 

[ChaserBug]

I don't know to much about this topic but I use some stuff called kickstart biotic. I use it for gas, heart burn and constipation. Costs about 12 bucks its made for kids but I like it, tastes like kool aide.

<a target=_blank class=ftalternatingbarlinklarge href="https://www.advocare.com/02033542/Store/ItemDetail.aspx?itemCode=K2201&id=H">KickStart Biotic</a>

 

[ChaserBug]

I don't know to much about this topic but I use some stuff called kickstart biotic. I use it for gas, heart burn and constipation. Costs about 12 bucks its made for kids but I like it, tastes like kool aide.

<a target=_blank class=ftalternatingbarlinklarge href="https://www.advocare.com/02033542/Store/ItemDetail.aspx?itemCode=K2201&id=H">KickStart Biotic</a>