Distal Intestinal Obstruction Syndrome

[Terry]

Hello,
My 9 year old step-daughter has Distal Intestinal Obstruction Syndrome. She started having pains in her lower right abdomen 2/21/08 (Thursday). At first it didn't seem like a big deal. But then on Sunday (2/24/08) she cried when we put her on her vest. I am a medicine nazi, I took over her care about a year and a half ago because she was not getting anything but her enzymes and her prevacid due to the fact that she would beg her Dad to let her have a "break." She could and would break his heart, mine, too. But rather than let her see it, I would treat it in the same way I would treat a child not wanting to brush their teeth. So, when she skipped her vest on Sunday, I insisted if she were to need to skip her vest Monday morning she would need a a doctors appointment. She went to one doctor or another everyday this week until a cat scan on Thursday sent her to the hospital. She was found to have an intestinal obstruction and is now on her second day of being in the hospital.
My question is could this possibly be because of me doing something wrong? Before she was skinny do to skipping the feeding tube, but she didn't have stomach pains, and now this. I give her enzymes every time she eats, and before and after her feeding tube.
Has anyone had any experience with this? Is it normal for her to have this at such a young age? When I look it up on the internet I keep finding results where it happens to people in their 20's.
I keep hearing the words she said when I first started putting her on all her meds playing in my head over and again, "Terry, no one else made me do all this medicine, and I didn't get sick for them, I promise I won't get sick for you." Of course that made me sad then because I knew no matter what it was a promise she couldn't keep, but her getting so sick now has others saying it is strange that she has never had a problem like this before now. Could this possibly be my fault? How could I have prevented it from happening?

 

[Terry]

Hello,
My 9 year old step-daughter has Distal Intestinal Obstruction Syndrome. She started having pains in her lower right abdomen 2/21/08 (Thursday). At first it didn't seem like a big deal. But then on Sunday (2/24/08) she cried when we put her on her vest. I am a medicine nazi, I took over her care about a year and a half ago because she was not getting anything but her enzymes and her prevacid due to the fact that she would beg her Dad to let her have a "break." She could and would break his heart, mine, too. But rather than let her see it, I would treat it in the same way I would treat a child not wanting to brush their teeth. So, when she skipped her vest on Sunday, I insisted if she were to need to skip her vest Monday morning she would need a a doctors appointment. She went to one doctor or another everyday this week until a cat scan on Thursday sent her to the hospital. She was found to have an intestinal obstruction and is now on her second day of being in the hospital.
My question is could this possibly be because of me doing something wrong? Before she was skinny do to skipping the feeding tube, but she didn't have stomach pains, and now this. I give her enzymes every time she eats, and before and after her feeding tube.
Has anyone had any experience with this? Is it normal for her to have this at such a young age? When I look it up on the internet I keep finding results where it happens to people in their 20's.
I keep hearing the words she said when I first started putting her on all her meds playing in my head over and again, "Terry, no one else made me do all this medicine, and I didn't get sick for them, I promise I won't get sick for you." Of course that made me sad then because I knew no matter what it was a promise she couldn't keep, but her getting so sick now has others saying it is strange that she has never had a problem like this before now. Could this possibly be my fault? How could I have prevented it from happening?

 

[Terry]

Hello,
My 9 year old step-daughter has Distal Intestinal Obstruction Syndrome. She started having pains in her lower right abdomen 2/21/08 (Thursday). At first it didn't seem like a big deal. But then on Sunday (2/24/08) she cried when we put her on her vest. I am a medicine nazi, I took over her care about a year and a half ago because she was not getting anything but her enzymes and her prevacid due to the fact that she would beg her Dad to let her have a "break." She could and would break his heart, mine, too. But rather than let her see it, I would treat it in the same way I would treat a child not wanting to brush their teeth. So, when she skipped her vest on Sunday, I insisted if she were to need to skip her vest Monday morning she would need a a doctors appointment. She went to one doctor or another everyday this week until a cat scan on Thursday sent her to the hospital. She was found to have an intestinal obstruction and is now on her second day of being in the hospital.
My question is could this possibly be because of me doing something wrong? Before she was skinny do to skipping the feeding tube, but she didn't have stomach pains, and now this. I give her enzymes every time she eats, and before and after her feeding tube.
Has anyone had any experience with this? Is it normal for her to have this at such a young age? When I look it up on the internet I keep finding results where it happens to people in their 20's.
I keep hearing the words she said when I first started putting her on all her meds playing in my head over and again, "Terry, no one else made me do all this medicine, and I didn't get sick for them, I promise I won't get sick for you." Of course that made me sad then because I knew no matter what it was a promise she couldn't keep, but her getting so sick now has others saying it is strange that she has never had a problem like this before now. Could this possibly be my fault? How could I have prevented it from happening?

 

[Terry]

Hello,
My 9 year old step-daughter has Distal Intestinal Obstruction Syndrome. She started having pains in her lower right abdomen 2/21/08 (Thursday). At first it didn't seem like a big deal. But then on Sunday (2/24/08) she cried when we put her on her vest. I am a medicine nazi, I took over her care about a year and a half ago because she was not getting anything but her enzymes and her prevacid due to the fact that she would beg her Dad to let her have a "break." She could and would break his heart, mine, too. But rather than let her see it, I would treat it in the same way I would treat a child not wanting to brush their teeth. So, when she skipped her vest on Sunday, I insisted if she were to need to skip her vest Monday morning she would need a a doctors appointment. She went to one doctor or another everyday this week until a cat scan on Thursday sent her to the hospital. She was found to have an intestinal obstruction and is now on her second day of being in the hospital.
My question is could this possibly be because of me doing something wrong? Before she was skinny do to skipping the feeding tube, but she didn't have stomach pains, and now this. I give her enzymes every time she eats, and before and after her feeding tube.
Has anyone had any experience with this? Is it normal for her to have this at such a young age? When I look it up on the internet I keep finding results where it happens to people in their 20's.
I keep hearing the words she said when I first started putting her on all her meds playing in my head over and again, "Terry, no one else made me do all this medicine, and I didn't get sick for them, I promise I won't get sick for you." Of course that made me sad then because I knew no matter what it was a promise she couldn't keep, but her getting so sick now has others saying it is strange that she has never had a problem like this before now. Could this possibly be my fault? How could I have prevented it from happening?

 

[Terry]

Hello,
<br /> My 9 year old step-daughter has Distal Intestinal Obstruction Syndrome. She started having pains in her lower right abdomen 2/21/08 (Thursday). At first it didn't seem like a big deal. But then on Sunday (2/24/08) she cried when we put her on her vest. I am a medicine nazi, I took over her care about a year and a half ago because she was not getting anything but her enzymes and her prevacid due to the fact that she would beg her Dad to let her have a "break." She could and would break his heart, mine, too. But rather than let her see it, I would treat it in the same way I would treat a child not wanting to brush their teeth. So, when she skipped her vest on Sunday, I insisted if she were to need to skip her vest Monday morning she would need a a doctors appointment. She went to one doctor or another everyday this week until a cat scan on Thursday sent her to the hospital. She was found to have an intestinal obstruction and is now on her second day of being in the hospital.
<br /> My question is could this possibly be because of me doing something wrong? Before she was skinny do to skipping the feeding tube, but she didn't have stomach pains, and now this. I give her enzymes every time she eats, and before and after her feeding tube.
<br /> Has anyone had any experience with this? Is it normal for her to have this at such a young age? When I look it up on the internet I keep finding results where it happens to people in their 20's.
<br /> I keep hearing the words she said when I first started putting her on all her meds playing in my head over and again, "Terry, no one else made me do all this medicine, and I didn't get sick for them, I promise I won't get sick for you." Of course that made me sad then because I knew no matter what it was a promise she couldn't keep, but her getting so sick now has others saying it is strange that she has never had a problem like this before now. Could this possibly be my fault? How could I have prevented it from happening?

 

[TonyaH]

Hi Terry,

Welcome to the site! Your step daughter is so lucky to have you in her corner!

Please remember that this disease acts differently in every patient. DIOS is not just for the 20 somethings. Because she is on tube feeds, it sounds like she has had gastro involvement for some time. Please don't blame yourself!

Ask any question you would like here. There is always someone with an answer. I'm sure you will recieve many responses pretty quickly.

I hope to see you on the boards more often! This site is a great resource!

 

[TonyaH]

Hi Terry,

Welcome to the site! Your step daughter is so lucky to have you in her corner!

Please remember that this disease acts differently in every patient. DIOS is not just for the 20 somethings. Because she is on tube feeds, it sounds like she has had gastro involvement for some time. Please don't blame yourself!

Ask any question you would like here. There is always someone with an answer. I'm sure you will recieve many responses pretty quickly.

I hope to see you on the boards more often! This site is a great resource!

 

[TonyaH]

Hi Terry,

Welcome to the site! Your step daughter is so lucky to have you in her corner!

Please remember that this disease acts differently in every patient. DIOS is not just for the 20 somethings. Because she is on tube feeds, it sounds like she has had gastro involvement for some time. Please don't blame yourself!

Ask any question you would like here. There is always someone with an answer. I'm sure you will recieve many responses pretty quickly.

I hope to see you on the boards more often! This site is a great resource!

 

[TonyaH]

Hi Terry,

Welcome to the site! Your step daughter is so lucky to have you in her corner!

Please remember that this disease acts differently in every patient. DIOS is not just for the 20 somethings. Because she is on tube feeds, it sounds like she has had gastro involvement for some time. Please don't blame yourself!

Ask any question you would like here. There is always someone with an answer. I'm sure you will recieve many responses pretty quickly.

I hope to see you on the boards more often! This site is a great resource!

 

[TonyaH]

Hi Terry,
<br />
<br />Welcome to the site! Your step daughter is so lucky to have you in her corner!
<br />
<br />Please remember that this disease acts differently in every patient. DIOS is not just for the 20 somethings. Because she is on tube feeds, it sounds like she has had gastro involvement for some time. Please don't blame yourself!
<br />
<br />Ask any question you would like here. There is always someone with an answer. I'm sure you will recieve many responses pretty quickly.
<br />
<br />I hope to see you on the boards more often! This site is a great resource!

 

[Terry]

Thanks for the welcome, Tonya!

I'm glad I found this forum.

I just reread my post, and I don't want it to seem like my husband was "neglecting" his daughter. He wasn't given a very good prognosis when she was diagnosed, and he didn't like to make her "unhappy." But within weeks of me insisting she get ALL of her treatments and setting up a schedule, he saw her improve. He saw that she could run like other kids and unless she was actually "sick" you couldn't pick her out as the CF kid at the park.

She went from a size 6 slim to a size 10 in 8 months. He nows supports me when she begs him for breaks if I happen to not be at home at med time. She has no idea how serious CF is, she is a worrier, and if she knew she would freak out all the time. I don't know at what age you are supposed to tell the kids.

But yes, she has always had malabsorption. Even with taking enzymes after being diagnosed a 3 years old, she wouldn't gain weight. She had a Mic-Key implanted at 4 years old.

Thanks for saying it isn't my fault. I still feel maybe I didn't do something right, or missed a sign of this happening.

Terry

 

[Terry]

Thanks for the welcome, Tonya!

I'm glad I found this forum.

I just reread my post, and I don't want it to seem like my husband was "neglecting" his daughter. He wasn't given a very good prognosis when she was diagnosed, and he didn't like to make her "unhappy." But within weeks of me insisting she get ALL of her treatments and setting up a schedule, he saw her improve. He saw that she could run like other kids and unless she was actually "sick" you couldn't pick her out as the CF kid at the park.

She went from a size 6 slim to a size 10 in 8 months. He nows supports me when she begs him for breaks if I happen to not be at home at med time. She has no idea how serious CF is, she is a worrier, and if she knew she would freak out all the time. I don't know at what age you are supposed to tell the kids.

But yes, she has always had malabsorption. Even with taking enzymes after being diagnosed a 3 years old, she wouldn't gain weight. She had a Mic-Key implanted at 4 years old.

Thanks for saying it isn't my fault. I still feel maybe I didn't do something right, or missed a sign of this happening.

Terry

 

[Terry]

Thanks for the welcome, Tonya!

I'm glad I found this forum.

I just reread my post, and I don't want it to seem like my husband was "neglecting" his daughter. He wasn't given a very good prognosis when she was diagnosed, and he didn't like to make her "unhappy." But within weeks of me insisting she get ALL of her treatments and setting up a schedule, he saw her improve. He saw that she could run like other kids and unless she was actually "sick" you couldn't pick her out as the CF kid at the park.

She went from a size 6 slim to a size 10 in 8 months. He nows supports me when she begs him for breaks if I happen to not be at home at med time. She has no idea how serious CF is, she is a worrier, and if she knew she would freak out all the time. I don't know at what age you are supposed to tell the kids.

But yes, she has always had malabsorption. Even with taking enzymes after being diagnosed a 3 years old, she wouldn't gain weight. She had a Mic-Key implanted at 4 years old.

Thanks for saying it isn't my fault. I still feel maybe I didn't do something right, or missed a sign of this happening.

Terry

 

[Terry]

Thanks for the welcome, Tonya!

I'm glad I found this forum.

I just reread my post, and I don't want it to seem like my husband was "neglecting" his daughter. He wasn't given a very good prognosis when she was diagnosed, and he didn't like to make her "unhappy." But within weeks of me insisting she get ALL of her treatments and setting up a schedule, he saw her improve. He saw that she could run like other kids and unless she was actually "sick" you couldn't pick her out as the CF kid at the park.

She went from a size 6 slim to a size 10 in 8 months. He nows supports me when she begs him for breaks if I happen to not be at home at med time. She has no idea how serious CF is, she is a worrier, and if she knew she would freak out all the time. I don't know at what age you are supposed to tell the kids.

But yes, she has always had malabsorption. Even with taking enzymes after being diagnosed a 3 years old, she wouldn't gain weight. She had a Mic-Key implanted at 4 years old.

Thanks for saying it isn't my fault. I still feel maybe I didn't do something right, or missed a sign of this happening.

Terry

 

[Terry]

Thanks for the welcome, Tonya!
<br />
<br />I'm glad I found this forum.
<br />
<br />I just reread my post, and I don't want it to seem like my husband was "neglecting" his daughter. He wasn't given a very good prognosis when she was diagnosed, and he didn't like to make her "unhappy." But within weeks of me insisting she get ALL of her treatments and setting up a schedule, he saw her improve. He saw that she could run like other kids and unless she was actually "sick" you couldn't pick her out as the CF kid at the park.
<br />
<br />She went from a size 6 slim to a size 10 in 8 months. He nows supports me when she begs him for breaks if I happen to not be at home at med time. She has no idea how serious CF is, she is a worrier, and if she knew she would freak out all the time. I don't know at what age you are supposed to tell the kids.
<br />
<br />But yes, she has always had malabsorption. Even with taking enzymes after being diagnosed a 3 years old, she wouldn't gain weight. She had a Mic-Key implanted at 4 years old.
<br />
<br />Thanks for saying it isn't my fault. I still feel maybe I didn't do something right, or missed a sign of this happening.
<br />
<br />Terry

 

[Ratatosk]

Some Cfers are prone to constipation issues. When DS was a baby he had some issues with constipation, meconium equivalent and if we noticed he wasn't stooling or he had very loose stools, decreased eating, but still had a big belly, he probably needed some milk of mag. His doctor explained that when he's older he'll probably have a "feeling" that he needs to take a hit of milk of mag, might need something a little stronger, sometimes people need to take go-lytely.

A friend of mine has a friend whose granddaughter with cf who was diagnosed because of constipation -- doctor wanted to rule it out. I believe she's on maintenance dosages of miralax.

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.

 

[Ratatosk]

Some Cfers are prone to constipation issues. When DS was a baby he had some issues with constipation, meconium equivalent and if we noticed he wasn't stooling or he had very loose stools, decreased eating, but still had a big belly, he probably needed some milk of mag. His doctor explained that when he's older he'll probably have a "feeling" that he needs to take a hit of milk of mag, might need something a little stronger, sometimes people need to take go-lytely.

A friend of mine has a friend whose granddaughter with cf who was diagnosed because of constipation -- doctor wanted to rule it out. I believe she's on maintenance dosages of miralax.

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.

 

[Ratatosk]

Some Cfers are prone to constipation issues. When DS was a baby he had some issues with constipation, meconium equivalent and if we noticed he wasn't stooling or he had very loose stools, decreased eating, but still had a big belly, he probably needed some milk of mag. His doctor explained that when he's older he'll probably have a "feeling" that he needs to take a hit of milk of mag, might need something a little stronger, sometimes people need to take go-lytely.

A friend of mine has a friend whose granddaughter with cf who was diagnosed because of constipation -- doctor wanted to rule it out. I believe she's on maintenance dosages of miralax.

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.

 

[Ratatosk]

Some Cfers are prone to constipation issues. When DS was a baby he had some issues with constipation, meconium equivalent and if we noticed he wasn't stooling or he had very loose stools, decreased eating, but still had a big belly, he probably needed some milk of mag. His doctor explained that when he's older he'll probably have a "feeling" that he needs to take a hit of milk of mag, might need something a little stronger, sometimes people need to take go-lytely.

A friend of mine has a friend whose granddaughter with cf who was diagnosed because of constipation -- doctor wanted to rule it out. I believe she's on maintenance dosages of miralax.

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.

 

[Ratatosk]

Some Cfers are prone to constipation issues. When DS was a baby he had some issues with constipation, meconium equivalent and if we noticed he wasn't stooling or he had very loose stools, decreased eating, but still had a big belly, he probably needed some milk of mag. His doctor explained that when he's older he'll probably have a "feeling" that he needs to take a hit of milk of mag, might need something a little stronger, sometimes people need to take go-lytely.
<br />
<br />A friend of mine has a friend whose granddaughter with cf who was diagnosed because of constipation -- doctor wanted to rule it out. I believe she's on maintenance dosages of miralax.
<br />
<br />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.