Distal Intestinal Obstruction Syndrome

T

Terry

Guest
"At least now maybe she'll notice the signs or maybe you or your husband will notice maybe a decrease in appetite, she'll realize she hasn't stooled in a few days... Maybe the doctors need to adjust her enzymes. Don't beat yourself up, you're doing what's best for her."


She actually was going to the bathroom each day. We keep an eye on that very well. She has had lots of problems with going too much, but never actually not going. I don't understand how she is blocked up but still going to the bathroom.

As far as appetite goes, she'll say she's hungry and then take one or two bites and be done most of the time. On a good day she eats less by mouth all day than the usual kid does at one meal.

We totally rely on tube feedings and scandi-shakes to keep her alive.

Thanks!
Terry
 
T

Terry

Guest
"At least now maybe she'll notice the signs or maybe you or your husband will notice maybe a decrease in appetite, she'll realize she hasn't stooled in a few days... Maybe the doctors need to adjust her enzymes. Don't beat yourself up, you're doing what's best for her."


She actually was going to the bathroom each day. We keep an eye on that very well. She has had lots of problems with going too much, but never actually not going. I don't understand how she is blocked up but still going to the bathroom.

As far as appetite goes, she'll say she's hungry and then take one or two bites and be done most of the time. On a good day she eats less by mouth all day than the usual kid does at one meal.

We totally rely on tube feedings and scandi-shakes to keep her alive.

Thanks!
Terry
 
T

Terry

Guest
"At least now maybe she'll notice the signs or maybe you or your husband will notice maybe a decrease in appetite, she'll realize she hasn't stooled in a few days... Maybe the doctors need to adjust her enzymes. Don't beat yourself up, you're doing what's best for her."


She actually was going to the bathroom each day. We keep an eye on that very well. She has had lots of problems with going too much, but never actually not going. I don't understand how she is blocked up but still going to the bathroom.

As far as appetite goes, she'll say she's hungry and then take one or two bites and be done most of the time. On a good day she eats less by mouth all day than the usual kid does at one meal.

We totally rely on tube feedings and scandi-shakes to keep her alive.

Thanks!
Terry
 
T

Terry

Guest
"At least now maybe she'll notice the signs or maybe you or your husband will notice maybe a decrease in appetite, she'll realize she hasn't stooled in a few days... Maybe the doctors need to adjust her enzymes. Don't beat yourself up, you're doing what's best for her."


She actually was going to the bathroom each day. We keep an eye on that very well. She has had lots of problems with going too much, but never actually not going. I don't understand how she is blocked up but still going to the bathroom.

As far as appetite goes, she'll say she's hungry and then take one or two bites and be done most of the time. On a good day she eats less by mouth all day than the usual kid does at one meal.

We totally rely on tube feedings and scandi-shakes to keep her alive.

Thanks!
Terry
 
T

Terry

Guest
"At least now maybe she'll notice the signs or maybe you or your husband will notice maybe a decrease in appetite, she'll realize she hasn't stooled in a few days... Maybe the doctors need to adjust her enzymes. Don't beat yourself up, you're doing what's best for her."
<br />
<br />
<br />She actually was going to the bathroom each day. We keep an eye on that very well. She has had lots of problems with going too much, but never actually not going. I don't understand how she is blocked up but still going to the bathroom.
<br />
<br />As far as appetite goes, she'll say she's hungry and then take one or two bites and be done most of the time. On a good day she eats less by mouth all day than the usual kid does at one meal.
<br />
<br />We totally rely on tube feedings and scandi-shakes to keep her alive.
<br />
<br />Thanks!
<br />Terry
 
R

Ratatosk

Administrator
Staff member
When DS was first having issues, we didn't understand how he could have all kinds of stool backed up in his colon -- was discovered on an xray when he was in for a regular cf appointment at 4 months, 'cuz he was still stooling, although it was fairly loose. It was explained to me that what he was stooling was seeping thru, going around all that poo in his colon. Once the milk of mag kicked in -- happened while I was giving him a bath in the sink at the hotel -- it was AMAZING how much poo that kid had. Relieved he was finally getting all that stuff out, but SHOCKED at how much there was. And of course grossed out that he pooped during his bath. Bleah

One of the things that drove me absolutely nuts when he was first diagnosed was not knowing if he was getting enough/too many enzymes. The doctor/nurses would just say "you'll know" -- no, I didn't know what "normal poo" look liked and I hated having to guess how many enzymes to give him based on his poo, especially when he was such a terrible eater.

IMO, discuss or have your daughter discuss with the doctor her pooping habits. Are they well formed, too loose, too hard... Maybe the doctor will come up with a solution -- more/different enzymes... Miralax...
 
R

Ratatosk

Administrator
Staff member
When DS was first having issues, we didn't understand how he could have all kinds of stool backed up in his colon -- was discovered on an xray when he was in for a regular cf appointment at 4 months, 'cuz he was still stooling, although it was fairly loose. It was explained to me that what he was stooling was seeping thru, going around all that poo in his colon. Once the milk of mag kicked in -- happened while I was giving him a bath in the sink at the hotel -- it was AMAZING how much poo that kid had. Relieved he was finally getting all that stuff out, but SHOCKED at how much there was. And of course grossed out that he pooped during his bath. Bleah

One of the things that drove me absolutely nuts when he was first diagnosed was not knowing if he was getting enough/too many enzymes. The doctor/nurses would just say "you'll know" -- no, I didn't know what "normal poo" look liked and I hated having to guess how many enzymes to give him based on his poo, especially when he was such a terrible eater.

IMO, discuss or have your daughter discuss with the doctor her pooping habits. Are they well formed, too loose, too hard... Maybe the doctor will come up with a solution -- more/different enzymes... Miralax...
 
R

Ratatosk

Administrator
Staff member
When DS was first having issues, we didn't understand how he could have all kinds of stool backed up in his colon -- was discovered on an xray when he was in for a regular cf appointment at 4 months, 'cuz he was still stooling, although it was fairly loose. It was explained to me that what he was stooling was seeping thru, going around all that poo in his colon. Once the milk of mag kicked in -- happened while I was giving him a bath in the sink at the hotel -- it was AMAZING how much poo that kid had. Relieved he was finally getting all that stuff out, but SHOCKED at how much there was. And of course grossed out that he pooped during his bath. Bleah

One of the things that drove me absolutely nuts when he was first diagnosed was not knowing if he was getting enough/too many enzymes. The doctor/nurses would just say "you'll know" -- no, I didn't know what "normal poo" look liked and I hated having to guess how many enzymes to give him based on his poo, especially when he was such a terrible eater.

IMO, discuss or have your daughter discuss with the doctor her pooping habits. Are they well formed, too loose, too hard... Maybe the doctor will come up with a solution -- more/different enzymes... Miralax...
 
R

Ratatosk

Administrator
Staff member
When DS was first having issues, we didn't understand how he could have all kinds of stool backed up in his colon -- was discovered on an xray when he was in for a regular cf appointment at 4 months, 'cuz he was still stooling, although it was fairly loose. It was explained to me that what he was stooling was seeping thru, going around all that poo in his colon. Once the milk of mag kicked in -- happened while I was giving him a bath in the sink at the hotel -- it was AMAZING how much poo that kid had. Relieved he was finally getting all that stuff out, but SHOCKED at how much there was. And of course grossed out that he pooped during his bath. Bleah

One of the things that drove me absolutely nuts when he was first diagnosed was not knowing if he was getting enough/too many enzymes. The doctor/nurses would just say "you'll know" -- no, I didn't know what "normal poo" look liked and I hated having to guess how many enzymes to give him based on his poo, especially when he was such a terrible eater.

IMO, discuss or have your daughter discuss with the doctor her pooping habits. Are they well formed, too loose, too hard... Maybe the doctor will come up with a solution -- more/different enzymes... Miralax...
 
R

Ratatosk

Administrator
Staff member
When DS was first having issues, we didn't understand how he could have all kinds of stool backed up in his colon -- was discovered on an xray when he was in for a regular cf appointment at 4 months, 'cuz he was still stooling, although it was fairly loose. It was explained to me that what he was stooling was seeping thru, going around all that poo in his colon. Once the milk of mag kicked in -- happened while I was giving him a bath in the sink at the hotel -- it was AMAZING how much poo that kid had. Relieved he was finally getting all that stuff out, but SHOCKED at how much there was. And of course grossed out that he pooped during his bath. Bleah
<br />
<br />One of the things that drove me absolutely nuts when he was first diagnosed was not knowing if he was getting enough/too many enzymes. The doctor/nurses would just say "you'll know" -- no, I didn't know what "normal poo" look liked and I hated having to guess how many enzymes to give him based on his poo, especially when he was such a terrible eater.
<br />
<br />IMO, discuss or have your daughter discuss with the doctor her pooping habits. Are they well formed, too loose, too hard... Maybe the doctor will come up with a solution -- more/different enzymes... Miralax...
 
T

Terry

Guest
Ratatosk -

Sorry, I had to laugh about the poo. One thing I picked up on in another topic is that some people give enzymes in the night, which we have not been told to do. The capsules she takes are pretty big, but I wonder if maybe there are liquid enzymes that can be put in her GI tube while she sleeps. She is very hard to wake, I'm afraid she would end up not swallowing the capsules right.

Would Miralax be used everyday? Or just if you notice symptoms? My SD hates doctors, hospitals, and will tolerate and fib about so much to not go. The day she was admitted she was swearing up and down that there was nothing wrong, she wasn't hurting any more. She wasn't even flinching when she was being pushed on, but a CT showed the obstruction.

She's a real puzzle she is. I can't much blame her, I would be sick of all the poking and prodding myself.

Terry
 
T

Terry

Guest
Ratatosk -

Sorry, I had to laugh about the poo. One thing I picked up on in another topic is that some people give enzymes in the night, which we have not been told to do. The capsules she takes are pretty big, but I wonder if maybe there are liquid enzymes that can be put in her GI tube while she sleeps. She is very hard to wake, I'm afraid she would end up not swallowing the capsules right.

Would Miralax be used everyday? Or just if you notice symptoms? My SD hates doctors, hospitals, and will tolerate and fib about so much to not go. The day she was admitted she was swearing up and down that there was nothing wrong, she wasn't hurting any more. She wasn't even flinching when she was being pushed on, but a CT showed the obstruction.

She's a real puzzle she is. I can't much blame her, I would be sick of all the poking and prodding myself.

Terry
 
T

Terry

Guest
Ratatosk -

Sorry, I had to laugh about the poo. One thing I picked up on in another topic is that some people give enzymes in the night, which we have not been told to do. The capsules she takes are pretty big, but I wonder if maybe there are liquid enzymes that can be put in her GI tube while she sleeps. She is very hard to wake, I'm afraid she would end up not swallowing the capsules right.

Would Miralax be used everyday? Or just if you notice symptoms? My SD hates doctors, hospitals, and will tolerate and fib about so much to not go. The day she was admitted she was swearing up and down that there was nothing wrong, she wasn't hurting any more. She wasn't even flinching when she was being pushed on, but a CT showed the obstruction.

She's a real puzzle she is. I can't much blame her, I would be sick of all the poking and prodding myself.

Terry
 
T

Terry

Guest
Ratatosk -

Sorry, I had to laugh about the poo. One thing I picked up on in another topic is that some people give enzymes in the night, which we have not been told to do. The capsules she takes are pretty big, but I wonder if maybe there are liquid enzymes that can be put in her GI tube while she sleeps. She is very hard to wake, I'm afraid she would end up not swallowing the capsules right.

Would Miralax be used everyday? Or just if you notice symptoms? My SD hates doctors, hospitals, and will tolerate and fib about so much to not go. The day she was admitted she was swearing up and down that there was nothing wrong, she wasn't hurting any more. She wasn't even flinching when she was being pushed on, but a CT showed the obstruction.

She's a real puzzle she is. I can't much blame her, I would be sick of all the poking and prodding myself.

Terry
 
T

Terry

Guest
Ratatosk -
<br />
<br />Sorry, I had to laugh about the poo. One thing I picked up on in another topic is that some people give enzymes in the night, which we have not been told to do. The capsules she takes are pretty big, but I wonder if maybe there are liquid enzymes that can be put in her GI tube while she sleeps. She is very hard to wake, I'm afraid she would end up not swallowing the capsules right.
<br />
<br />Would Miralax be used everyday? Or just if you notice symptoms? My SD hates doctors, hospitals, and will tolerate and fib about so much to not go. The day she was admitted she was swearing up and down that there was nothing wrong, she wasn't hurting any more. She wasn't even flinching when she was being pushed on, but a CT showed the obstruction.
<br />
<br />She's a real puzzle she is. I can't much blame her, I would be sick of all the poking and prodding myself.
<br />
<br />Terry
<br />
 
I

izemmom

New member
We use a powdered enzyme that goes into the bag with the formula for the overnight feeds. It is called KUZYME. Emily is on Pediasure formula. I don't know if this particular enxyme would work for you but it's worth asking. Good luck. Hope she's feeling better soon. She's lucky to have you.

Welcome to the site.
 
I

izemmom

New member
We use a powdered enzyme that goes into the bag with the formula for the overnight feeds. It is called KUZYME. Emily is on Pediasure formula. I don't know if this particular enxyme would work for you but it's worth asking. Good luck. Hope she's feeling better soon. She's lucky to have you.

Welcome to the site.
 
I

izemmom

New member
We use a powdered enzyme that goes into the bag with the formula for the overnight feeds. It is called KUZYME. Emily is on Pediasure formula. I don't know if this particular enxyme would work for you but it's worth asking. Good luck. Hope she's feeling better soon. She's lucky to have you.

Welcome to the site.
 
I

izemmom

New member
We use a powdered enzyme that goes into the bag with the formula for the overnight feeds. It is called KUZYME. Emily is on Pediasure formula. I don't know if this particular enxyme would work for you but it's worth asking. Good luck. Hope she's feeling better soon. She's lucky to have you.

Welcome to the site.
 
I

izemmom

New member
We use a powdered enzyme that goes into the bag with the formula for the overnight feeds. It is called KUZYME. Emily is on Pediasure formula. I don't know if this particular enxyme would work for you but it's worth asking. Good luck. Hope she's feeling better soon. She's lucky to have you.
<br />
<br />Welcome to the site.
 
You must log in or register to reply here.
Top