So sorry! I know DS with his last bout of it a couple years ago had to have gastrographin enemas, an ng tube with golytely, then they tried mucomyst. Not sure what eventually ended up working -- probably the mucomyst because things started rumbling all night long and in the morning things finally broke loose.
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DIOS [distal intestinal obstruction syndrome]
- Thread starter falloutboygurl16
- Start date
I'm so sorry, Tamara. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope by now you've gotten some relief.
Oh and yeah we tried the typical Fleet enema, too... but an obstruction due to DIOS is much too far up to be helped with a home enema, and it did no good. Miralax has a lesser-known effect of helping to thin mucus, which is why it can be helpful in those prone to obstruction vs. typical constipation, and we've seen this effect with Emily. We've had to get used to a 'new normal' with Emily's stools but now that we know what to look for, we can usually tell when things are 'Emily-normal.'
Oh and yeah we tried the typical Fleet enema, too... but an obstruction due to DIOS is much too far up to be helped with a home enema, and it did no good. Miralax has a lesser-known effect of helping to thin mucus, which is why it can be helpful in those prone to obstruction vs. typical constipation, and we've seen this effect with Emily. We've had to get used to a 'new normal' with Emily's stools but now that we know what to look for, we can usually tell when things are 'Emily-normal.'
I'm so sorry, Tamara. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope by now you've gotten some relief.
Oh and yeah we tried the typical Fleet enema, too... but an obstruction due to DIOS is much too far up to be helped with a home enema, and it did no good. Miralax has a lesser-known effect of helping to thin mucus, which is why it can be helpful in those prone to obstruction vs. typical constipation, and we've seen this effect with Emily. We've had to get used to a 'new normal' with Emily's stools but now that we know what to look for, we can usually tell when things are 'Emily-normal.'
Oh and yeah we tried the typical Fleet enema, too... but an obstruction due to DIOS is much too far up to be helped with a home enema, and it did no good. Miralax has a lesser-known effect of helping to thin mucus, which is why it can be helpful in those prone to obstruction vs. typical constipation, and we've seen this effect with Emily. We've had to get used to a 'new normal' with Emily's stools but now that we know what to look for, we can usually tell when things are 'Emily-normal.'
I'm so sorry, Tamara. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope by now you've gotten some relief.
<br />
<br />Oh and yeah we tried the typical Fleet enema, too... but an obstruction due to DIOS is much too far up to be helped with a home enema, and it did no good. Miralax has a lesser-known effect of helping to thin mucus, which is why it can be helpful in those prone to obstruction vs. typical constipation, and we've seen this effect with Emily. We've had to get used to a 'new normal' with Emily's stools but now that we know what to look for, we can usually tell when things are 'Emily-normal.'
<br />
<br />Oh and yeah we tried the typical Fleet enema, too... but an obstruction due to DIOS is much too far up to be helped with a home enema, and it did no good. Miralax has a lesser-known effect of helping to thin mucus, which is why it can be helpful in those prone to obstruction vs. typical constipation, and we've seen this effect with Emily. We've had to get used to a 'new normal' with Emily's stools but now that we know what to look for, we can usually tell when things are 'Emily-normal.'
falloutboygurl16
New member
well 3rd time hospital visit this month for the SAME PROBLEM.
im on my 5th gallon of golytely this month and its not working.
last nite i drank the 4liters and today another 4...but i can tell im not clean...and the doctors want to blame this on ME not taking the miralax when clearly even the golytely isnt working? ughhh. :[
what do you do when you know your doctors are not right or are not treating something aggressively?
i dont know what to do now.
ive talked to the GI doctors and they dont seem know much either....ugh.
where is dr. house when you neeed him?>
im on my 5th gallon of golytely this month and its not working.
last nite i drank the 4liters and today another 4...but i can tell im not clean...and the doctors want to blame this on ME not taking the miralax when clearly even the golytely isnt working? ughhh. :[
what do you do when you know your doctors are not right or are not treating something aggressively?
i dont know what to do now.
ive talked to the GI doctors and they dont seem know much either....ugh.
where is dr. house when you neeed him?>
falloutboygurl16
New member
well 3rd time hospital visit this month for the SAME PROBLEM.
im on my 5th gallon of golytely this month and its not working.
last nite i drank the 4liters and today another 4...but i can tell im not clean...and the doctors want to blame this on ME not taking the miralax when clearly even the golytely isnt working? ughhh. :[
what do you do when you know your doctors are not right or are not treating something aggressively?
i dont know what to do now.
ive talked to the GI doctors and they dont seem know much either....ugh.
where is dr. house when you neeed him?>
im on my 5th gallon of golytely this month and its not working.
last nite i drank the 4liters and today another 4...but i can tell im not clean...and the doctors want to blame this on ME not taking the miralax when clearly even the golytely isnt working? ughhh. :[
what do you do when you know your doctors are not right or are not treating something aggressively?
i dont know what to do now.
ive talked to the GI doctors and they dont seem know much either....ugh.
where is dr. house when you neeed him?>
falloutboygurl16
New member
well 3rd time hospital visit this month for the SAME PROBLEM.
<br />im on my 5th gallon of golytely this month and its not working.
<br />last nite i drank the 4liters and today another 4...but i can tell im not clean...and the doctors want to blame this on ME not taking the miralax when clearly even the golytely isnt working? ughhh. :[
<br />what do you do when you know your doctors are not right or are not treating something aggressively?
<br />i dont know what to do now.
<br />ive talked to the GI doctors and they dont seem know much either....ugh.
<br />where is dr. house when you neeed him?>
<br />
<br />im on my 5th gallon of golytely this month and its not working.
<br />last nite i drank the 4liters and today another 4...but i can tell im not clean...and the doctors want to blame this on ME not taking the miralax when clearly even the golytely isnt working? ughhh. :[
<br />what do you do when you know your doctors are not right or are not treating something aggressively?
<br />i dont know what to do now.
<br />ive talked to the GI doctors and they dont seem know much either....ugh.
<br />where is dr. house when you neeed him?>
<br />
In cases like this, my husband reminds me that "we are the customers" -- you're paying for a service -- doctors and basically it's time to say this isn't working, lets do a scan, xray... Sometimes they run contrast down an ng tube... DS had several xrays, including a gastrografin (sp) enema, which also sometimes helps to break things loose. In DS' case, he wasn't passing gas, nothing was coming thru and they determined thru those scans that his obstruction was further up on his abdomen and wasn't moving. He needed surgery because he had scarring adhesions from his orginal surgery an an infant.
Later after his surgery (a week), there was apparently still some very hard, tar like stool that wouldn't break loose. They tried the enema, golytely and finally the put mucomyst down his ng tube. He started to rumble -- in the middle of the night DH while rubbing DS' stomach said he actually felt a piece of hard stool move. The next morning things finally broke loose.
Later after his surgery (a week), there was apparently still some very hard, tar like stool that wouldn't break loose. They tried the enema, golytely and finally the put mucomyst down his ng tube. He started to rumble -- in the middle of the night DH while rubbing DS' stomach said he actually felt a piece of hard stool move. The next morning things finally broke loose.
In cases like this, my husband reminds me that "we are the customers" -- you're paying for a service -- doctors and basically it's time to say this isn't working, lets do a scan, xray... Sometimes they run contrast down an ng tube... DS had several xrays, including a gastrografin (sp) enema, which also sometimes helps to break things loose. In DS' case, he wasn't passing gas, nothing was coming thru and they determined thru those scans that his obstruction was further up on his abdomen and wasn't moving. He needed surgery because he had scarring adhesions from his orginal surgery an an infant.
Later after his surgery (a week), there was apparently still some very hard, tar like stool that wouldn't break loose. They tried the enema, golytely and finally the put mucomyst down his ng tube. He started to rumble -- in the middle of the night DH while rubbing DS' stomach said he actually felt a piece of hard stool move. The next morning things finally broke loose.
Later after his surgery (a week), there was apparently still some very hard, tar like stool that wouldn't break loose. They tried the enema, golytely and finally the put mucomyst down his ng tube. He started to rumble -- in the middle of the night DH while rubbing DS' stomach said he actually felt a piece of hard stool move. The next morning things finally broke loose.
<p>In cases like this, my husband reminds me that "we are the customers" -- you're paying for a service -- doctors and basically it's time to say this isn't working, lets do a scan, xray... Sometimes they run contrast down an ng tube... DS had several xrays, including a gastrografin (sp) enema, which also sometimes helps to break things loose. In DS' case, he wasn't passing gas, nothing was coming thru and they determined thru those scans that his obstruction was further up on his abdomen and wasn't moving. He needed surgery because he had scarring adhesions from his orginal surgery an an infant.
<p>Later after his surgery (a week), there was apparently still some very hard, tar like stool that wouldn't break loose. They tried the enema, golytely and finally the put mucomyst down his ng tube. He started to rumble -- in the middle of the night DH while rubbing DS' stomach said he actually felt a piece of hard stool move. The next morning things finally broke loose.
<p>Later after his surgery (a week), there was apparently still some very hard, tar like stool that wouldn't break loose. They tried the enema, golytely and finally the put mucomyst down his ng tube. He started to rumble -- in the middle of the night DH while rubbing DS' stomach said he actually felt a piece of hard stool move. The next morning things finally broke loose.
falloutboygurl16
New member
maybe suggesting that to the dr.
ive been scheduled for a colonoscopy to see if there are any underlying causes and they did a c diff test so hopefully that will bring some answers..but as far as i know its lactulose and miralax every day for the rest of my life...as if handling cf and cfrd wasnt enough.
its tough but i guess we do what we have to.
i dont plan on leaving this earth anytime soon....
ive been scheduled for a colonoscopy to see if there are any underlying causes and they did a c diff test so hopefully that will bring some answers..but as far as i know its lactulose and miralax every day for the rest of my life...as if handling cf and cfrd wasnt enough.
its tough but i guess we do what we have to.
i dont plan on leaving this earth anytime soon....
falloutboygurl16
New member
maybe suggesting that to the dr.
ive been scheduled for a colonoscopy to see if there are any underlying causes and they did a c diff test so hopefully that will bring some answers..but as far as i know its lactulose and miralax every day for the rest of my life...as if handling cf and cfrd wasnt enough.
its tough but i guess we do what we have to.
i dont plan on leaving this earth anytime soon....
ive been scheduled for a colonoscopy to see if there are any underlying causes and they did a c diff test so hopefully that will bring some answers..but as far as i know its lactulose and miralax every day for the rest of my life...as if handling cf and cfrd wasnt enough.
its tough but i guess we do what we have to.
i dont plan on leaving this earth anytime soon....
falloutboygurl16
New member
maybe suggesting that to the dr.
<br />ive been scheduled for a colonoscopy to see if there are any underlying causes and they did a c diff test so hopefully that will bring some answers..but as far as i know its lactulose and miralax every day for the rest of my life...as if handling cf and cfrd wasnt enough.
<br />its tough but i guess we do what we have to.
<br />i dont plan on leaving this earth anytime soon....
<br />
<br />ive been scheduled for a colonoscopy to see if there are any underlying causes and they did a c diff test so hopefully that will bring some answers..but as far as i know its lactulose and miralax every day for the rest of my life...as if handling cf and cfrd wasnt enough.
<br />its tough but i guess we do what we have to.
<br />i dont plan on leaving this earth anytime soon....
<br />
F
fuddlynn
Guest
I too have struggeled with this. I am 40 now and 5 weeks ago had 10 inches of my intestine taken out along with my appendix which was heavily impacted with stool from years of obstructions at the secum ilieum. My first obstruction appeared when I was 18 years old. I was hospitalized as though there was some major problem but later I just came to understand it was a normal part of my condition.
I took golytely when I got really obstructed (as in nothing was passing through) but later I learned that I could often just eat something with lots of pills and it would push the obstruction through. You tend to learn more about your body when you feel pain. My recovery has taught me that walking really does strengthen the peristalsis process but you don't tend to sense this benefit when your "healthy" so don't underestimate the importance of excercise.
Golytely tends to make me really chilled. I'm not sure if you experience this. My docs say I'm crazy and that has nothing to do with Golytely. Perhaps it's just the natural cooling effect of a high volume of fluid at once.
Finally I will say that I never had problems unless I was negligent on my enzymes. If I am solid with my enzyme intake, I don't get obstructed. That is really hard to do when our a grazer and have a really active lifestyle like I do.
I took golytely when I got really obstructed (as in nothing was passing through) but later I learned that I could often just eat something with lots of pills and it would push the obstruction through. You tend to learn more about your body when you feel pain. My recovery has taught me that walking really does strengthen the peristalsis process but you don't tend to sense this benefit when your "healthy" so don't underestimate the importance of excercise.
Golytely tends to make me really chilled. I'm not sure if you experience this. My docs say I'm crazy and that has nothing to do with Golytely. Perhaps it's just the natural cooling effect of a high volume of fluid at once.
Finally I will say that I never had problems unless I was negligent on my enzymes. If I am solid with my enzyme intake, I don't get obstructed. That is really hard to do when our a grazer and have a really active lifestyle like I do.
F
fuddlynn
Guest
I too have struggeled with this. I am 40 now and 5 weeks ago had 10 inches of my intestine taken out along with my appendix which was heavily impacted with stool from years of obstructions at the secum ilieum. My first obstruction appeared when I was 18 years old. I was hospitalized as though there was some major problem but later I just came to understand it was a normal part of my condition.
I took golytely when I got really obstructed (as in nothing was passing through) but later I learned that I could often just eat something with lots of pills and it would push the obstruction through. You tend to learn more about your body when you feel pain. My recovery has taught me that walking really does strengthen the peristalsis process but you don't tend to sense this benefit when your "healthy" so don't underestimate the importance of excercise.
Golytely tends to make me really chilled. I'm not sure if you experience this. My docs say I'm crazy and that has nothing to do with Golytely. Perhaps it's just the natural cooling effect of a high volume of fluid at once.
Finally I will say that I never had problems unless I was negligent on my enzymes. If I am solid with my enzyme intake, I don't get obstructed. That is really hard to do when our a grazer and have a really active lifestyle like I do.
I took golytely when I got really obstructed (as in nothing was passing through) but later I learned that I could often just eat something with lots of pills and it would push the obstruction through. You tend to learn more about your body when you feel pain. My recovery has taught me that walking really does strengthen the peristalsis process but you don't tend to sense this benefit when your "healthy" so don't underestimate the importance of excercise.
Golytely tends to make me really chilled. I'm not sure if you experience this. My docs say I'm crazy and that has nothing to do with Golytely. Perhaps it's just the natural cooling effect of a high volume of fluid at once.
Finally I will say that I never had problems unless I was negligent on my enzymes. If I am solid with my enzyme intake, I don't get obstructed. That is really hard to do when our a grazer and have a really active lifestyle like I do.
F
fuddlynn
Guest
I too have struggeled with this. I am 40 now and 5 weeks ago had 10 inches of my intestine taken out along with my appendix which was heavily impacted with stool from years of obstructions at the secum ilieum. My first obstruction appeared when I was 18 years old. I was hospitalized as though there was some major problem but later I just came to understand it was a normal part of my condition.
<br />
<br />I took golytely when I got really obstructed (as in nothing was passing through) but later I learned that I could often just eat something with lots of pills and it would push the obstruction through. You tend to learn more about your body when you feel pain. My recovery has taught me that walking really does strengthen the peristalsis process but you don't tend to sense this benefit when your "healthy" so don't underestimate the importance of excercise.
<br />
<br />Golytely tends to make me really chilled. I'm not sure if you experience this. My docs say I'm crazy and that has nothing to do with Golytely. Perhaps it's just the natural cooling effect of a high volume of fluid at once.
<br />
<br />Finally I will say that I never had problems unless I was negligent on my enzymes. If I am solid with my enzyme intake, I don't get obstructed. That is really hard to do when our a grazer and have a really active lifestyle like I do.
<br />
<br />I took golytely when I got really obstructed (as in nothing was passing through) but later I learned that I could often just eat something with lots of pills and it would push the obstruction through. You tend to learn more about your body when you feel pain. My recovery has taught me that walking really does strengthen the peristalsis process but you don't tend to sense this benefit when your "healthy" so don't underestimate the importance of excercise.
<br />
<br />Golytely tends to make me really chilled. I'm not sure if you experience this. My docs say I'm crazy and that has nothing to do with Golytely. Perhaps it's just the natural cooling effect of a high volume of fluid at once.
<br />
<br />Finally I will say that I never had problems unless I was negligent on my enzymes. If I am solid with my enzyme intake, I don't get obstructed. That is really hard to do when our a grazer and have a really active lifestyle like I do.
DS has been snacking on peanuts quite a bit and then has a light supper of cereal. He's really hungry when he gets home from school, so he has a good snack, but I think he may have overdone the peanuts yesterday. This morning he said he wasn't hungry and balked at eating a donut. Said he was full. Then later said his stomach "felt funny" -- figured out he felt like he had to stool and it felt weird around his belly button.
He's still stooling, did give him some milk of mag just to keep things moving. Just haven't had to deal with anything like this for a long time, so made me edgy. Later said he was hungry and had a light lunch, snacked on chips this afternoon -- wouldn't let him have peanuts and a light supper. Seems fine, just nervous.
He's still stooling, did give him some milk of mag just to keep things moving. Just haven't had to deal with anything like this for a long time, so made me edgy. Later said he was hungry and had a light lunch, snacked on chips this afternoon -- wouldn't let him have peanuts and a light supper. Seems fine, just nervous.
DS has been snacking on peanuts quite a bit and then has a light supper of cereal. He's really hungry when he gets home from school, so he has a good snack, but I think he may have overdone the peanuts yesterday. This morning he said he wasn't hungry and balked at eating a donut. Said he was full. Then later said his stomach "felt funny" -- figured out he felt like he had to stool and it felt weird around his belly button.
He's still stooling, did give him some milk of mag just to keep things moving. Just haven't had to deal with anything like this for a long time, so made me edgy. Later said he was hungry and had a light lunch, snacked on chips this afternoon -- wouldn't let him have peanuts and a light supper. Seems fine, just nervous.
He's still stooling, did give him some milk of mag just to keep things moving. Just haven't had to deal with anything like this for a long time, so made me edgy. Later said he was hungry and had a light lunch, snacked on chips this afternoon -- wouldn't let him have peanuts and a light supper. Seems fine, just nervous.
DS has been snacking on peanuts quite a bit and then has a light supper of cereal. He's really hungry when he gets home from school, so he has a good snack, but I think he may have overdone the peanuts yesterday. This morning he said he wasn't hungry and balked at eating a donut. Said he was full. Then later said his stomach "felt funny" -- figured out he felt like he had to stool and it felt weird around his belly button.
<br />
<br />He's still stooling, did give him some milk of mag just to keep things moving. Just haven't had to deal with anything like this for a long time, so made me edgy. Later said he was hungry and had a light lunch, snacked on chips this afternoon -- wouldn't let him have peanuts and a light supper. Seems fine, just nervous.
<br />
<br />
<br />He's still stooling, did give him some milk of mag just to keep things moving. Just haven't had to deal with anything like this for a long time, so made me edgy. Later said he was hungry and had a light lunch, snacked on chips this afternoon -- wouldn't let him have peanuts and a light supper. Seems fine, just nervous.
<br />
falloutboygurl16
New member
awww im sorry liza! hopefully everything works out.....i got my gallbladder taken out a week and a half ago so im still recovering...when it was removed the surgeon said t was small and shriveled so it wasnt working at all...so hopefully this and taking the meds from the c-diff will make everything work out. im still taking lactulose every other day but otherwise i dont feel too bad anymore! thank god. :]
so now we just gotta see how my stomach does without the gallbladder and all that...good im hoping. :]
so now we just gotta see how my stomach does without the gallbladder and all that...good im hoping. :]