Blockage but pancreatic sufficient

[Alyssa]

My daughter is pancreatic sufficient - we have never dealt with digestion or enzyme issues. She is 17 years old.

She was at the urologist so he could take a look at her x-ray for a kidney stone, when he pointed out that he could not see her kidney because she was constipated.

She didn't "feel" constipated at the time, and also always has regular bowel movements at least once a day so my questions are:


1) do pancreatic sufficient people get blockages?

2) is a "mild" blockage just constipation?

3) if you get a blockage, do you still have bowel movements -- does
some stuff get by while some of it gets stuck in a particular area?

4) what typically causes blockages in pwcf?

Thanks everyone !

 

[Alyssa]

My daughter is pancreatic sufficient - we have never dealt with digestion or enzyme issues. She is 17 years old.

She was at the urologist so he could take a look at her x-ray for a kidney stone, when he pointed out that he could not see her kidney because she was constipated.

She didn't "feel" constipated at the time, and also always has regular bowel movements at least once a day so my questions are:


1) do pancreatic sufficient people get blockages?

2) is a "mild" blockage just constipation?

3) if you get a blockage, do you still have bowel movements -- does
some stuff get by while some of it gets stuck in a particular area?

4) what typically causes blockages in pwcf?

Thanks everyone !

 

[Mockingbird]

If I remember right DIOS (that the constipation CFers get) rarely happens with people who are pancreatic sufficient.

A mild blockage does not necessarily mean constipation, but constipation can result from it. (Constipation is when bowel movement happen less often than normal, or something like that.)

With a partial blockage some stuff gets by, but it can be rather uncomfortable. If the blockage isn't enough to impede the flow of the intestine, the person won't feel it, but if your daughter indeed has DIOS, then the blockage will continue to build (like the pipes they show in the draino commercial, or arteries in a cholesterol commercial =-)

Blockage usually occurs when the enzyme dosage isn't right (it could be either too much or too little), from dehydration, or from a change in diet.

At any rate, your doctor will probably do some tests or something to see if your daughter needs to start taking enzymes, or if the blockage is just something unrelated. Good luck!

 

[Mockingbird]

If I remember right DIOS (that the constipation CFers get) rarely happens with people who are pancreatic sufficient.

A mild blockage does not necessarily mean constipation, but constipation can result from it. (Constipation is when bowel movement happen less often than normal, or something like that.)

With a partial blockage some stuff gets by, but it can be rather uncomfortable. If the blockage isn't enough to impede the flow of the intestine, the person won't feel it, but if your daughter indeed has DIOS, then the blockage will continue to build (like the pipes they show in the draino commercial, or arteries in a cholesterol commercial =-)

Blockage usually occurs when the enzyme dosage isn't right (it could be either too much or too little), from dehydration, or from a change in diet.

At any rate, your doctor will probably do some tests or something to see if your daughter needs to start taking enzymes, or if the blockage is just something unrelated. Good luck!

 

[anonymous]

I was told by my CF doc that PWCF who are pancreatic sufficient tend to be very constipated, something to do with the genetic defect. Maybe your daughter is backed up, even though she is moving her bowels daily. What has helped me greatly is Miralax, it gets at the cause of the constipation, which is that there isn't enough water retained in the stool. You can eat fiber 'till you are blue in the face and it won't help because of the nature of the CF intestine. I never realized how consipated I was until I started taking the Miralax, I feel so much better. Hope this helps.

 

[anonymous]

I was told by my CF doc that PWCF who are pancreatic sufficient tend to be very constipated, something to do with the genetic defect. Maybe your daughter is backed up, even though she is moving her bowels daily. What has helped me greatly is Miralax, it gets at the cause of the constipation, which is that there isn't enough water retained in the stool. You can eat fiber 'till you are blue in the face and it won't help because of the nature of the CF intestine. I never realized how consipated I was until I started taking the Miralax, I feel so much better. Hope this helps.

 

[Alyssa]

Thanks for the info everyone -- very helpful.

To the anonymous poster that mentioned Miralax -- do you take that every single day or just once in a while for more like a clean out period?

 

[Alyssa]

Thanks for the info everyone -- very helpful.

To the anonymous poster that mentioned Miralax -- do you take that every single day or just once in a while for more like a clean out period?

 

[anonymous]

A friend of mine's granddaughter is on miralax every day. With DS we've just had to use Milk of Mag for a week or so until things get moved out again. We can usually tell if he needs some -- won't eat as much, hasn't had a bm, gets cranky. A few times we let it get a bit too far and DS had some huge hard stools. I was terrified, he was in pain and terrified 'cuz they'd practically get stuck. Liza

 

[anonymous]

A friend of mine's granddaughter is on miralax every day. With DS we've just had to use Milk of Mag for a week or so until things get moved out again. We can usually tell if he needs some -- won't eat as much, hasn't had a bm, gets cranky. A few times we let it get a bit too far and DS had some huge hard stools. I was terrified, he was in pain and terrified 'cuz they'd practically get stuck. Liza

 

[anonymous]

I do take Miralax every day. If I accidentally miss a day it isn't the end of the world, but I feel much better if I take it regularly. Hope this helps!

 

[anonymous]

I do take Miralax every day. If I accidentally miss a day it isn't the end of the world, but I feel much better if I take it regularly. Hope this helps!

 

[anonymous]

I agree with Karen. A blockage/obstruction and constipation are two different things. In fact, I was told by the doctors not to confuse the two because history of blockages is much more serious than constipation.

When my daughter begins to get "backed up" she will not stool and will sometimes begin to vomit. Even so, she has yet to have a true blockage or obstruction. Sometimes when she gets backed up they have to give a solution called "Go Litely (sp?)". It's stronger than Miralax and only used if Miralax is not doing the trick.

Daily Miralax has been sufficient to keep things pretty regular for my daughter. If her stools start slowing down sometimes we double the dose until she is regular again.

Good Luck!

Maria (Sami's mom)

 

[anonymous]

I agree with Karen. A blockage/obstruction and constipation are two different things. In fact, I was told by the doctors not to confuse the two because history of blockages is much more serious than constipation.

When my daughter begins to get "backed up" she will not stool and will sometimes begin to vomit. Even so, she has yet to have a true blockage or obstruction. Sometimes when she gets backed up they have to give a solution called "Go Litely (sp?)". It's stronger than Miralax and only used if Miralax is not doing the trick.

Daily Miralax has been sufficient to keep things pretty regular for my daughter. If her stools start slowing down sometimes we double the dose until she is regular again.

Good Luck!

Maria (Sami's mom)

 

[anonymous]

Karen-

I agree completely with your view of Go Litely. We had no choice in the use of it because Sami was in the hospital at the time. Luckily, she had a g-tube so she didn't have to drink it orally. But it was still horrible. They just loaded it in throughout the night until she was so uncomfortable and woke up crying. She did finally start stooling, and stooling and stooling . . .

Maria (Sami's mom)

 

[anonymous]

Karen-

I agree completely with your view of Go Litely. We had no choice in the use of it because Sami was in the hospital at the time. Luckily, she had a g-tube so she didn't have to drink it orally. But it was still horrible. They just loaded it in throughout the night until she was so uncomfortable and woke up crying. She did finally start stooling, and stooling and stooling . . .

Maria (Sami's mom)