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cris50

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PALS
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California
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Ukiah
Hello to you all,
I'm a new poster but have been visiting this forum for several months. I appreciate all of your postings. My 82 year old mom was diagnosed with ALS in January of this year. She has bulbar symptoms and is now unable to walk..she can shuffle to the bathroom with a walker but has gradually moved to sitting in one place most of the day. She initially did not want a peg tube or bipap. She changed her mind about the peg and had one installed in March. She cannot tolerate full feedings (and absolutely hates the constipation and alternating diarrhea that results from use of milk of mag) She's instructed us to give her half strength feeds 3 times a day plus some water. Friday we tried a highly concentrated small volume food supplement via the tube (benecalorie) on suggestion from the ALS cllinic nurse, and immediately after she experienced what she described as a "constant cramp" so severe she refused food and couldn't sleep. 2 days later, after consults with MD, use of reglan to avoid nausea and push feed through intestines and no relief we took her to the emergency room where they pretty much blasted her colon and gave her morphine for pain. A CAT scan to rule out a complicating factor revealed nothing but much more stool in her colon. We left her weak and sleeping last night and expect to bring her home today. My question is how to avoid this situation. She was having bowel movements every few days, was not taking in much formula although it did have a lot of fiber in it, did not "feel" constipated but suddenly had this terrible pain which was caused by a pile of pasty stool piling up in her lower bowel.
Any suggestions? Thanks so much for sharing your collected collective wisdom.
cris
 

vantec

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Dec 12, 2006
Messages
108
Reason
Learn about ALS
Country
US
State
OH
City
Wakeman
cris50 said:
Hello to you all,
I'm a new poster but have been visiting this forum for several months. I appreciate all of your postings. My 82 year old mom was diagnosed with ALS in January of this year. She has bulbar symptoms and is now unable to walk..she can shuffle to the bathroom with a walker but has gradually moved to sitting in one place most of the day. She initially did not want a peg tube or bipap. She changed her mind about the peg and had one installed in March. She cannot tolerate full feedings (and absolutely hates the constipation and alternating diarrhea that results from use of milk of mag) She's instructed us to give her half strength feeds 3 times a day plus some water. Friday we tried a highly concentrated small volume food supplement via the tube (benecalorie) on suggestion from the ALS cllinic nurse, and immediately after she experienced what she described as a "constant cramp" so severe she refused food and couldn't sleep. 2 days later, after consults with MD, use of reglan to avoid nausea and push feed through intestines and no relief we took her to the emergency room where they pretty much blasted her colon and gave her morphine for pain. A CAT scan to rule out a complicating factor revealed nothing but much more stool in her colon. We left her weak and sleeping last night and expect to bring her home today. My question is how to avoid this situation. She was having bowel movements every few days, was not taking in much formula although it did have a lot of fiber in it, did not "feel" constipated but suddenly had this terrible pain which was caused by a pile of pasty stool piling up in her lower bowel.
Any suggestions? Thanks so much for sharing your collected collective wisdom.
cris

Have you tried Polyethylene Glycol 3350, NF powder for solution? I find it works well for me, and can be mixed with water or other fluids. It was prescription only, but just this month, it can be purchased over the counter. Hope this helps.

Conrad
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
Hi cris,

I have found that the fiber contained in my liquid food is not enough. I don't know what country you live in, but in the US, I use a product called Metamucil. I use the tablet form, and dissolve two tablets in water every other night. This, together with lots of water during the day, keeps me regular. This is a very small dose. The directions allow more Metamucil if needed.

Mike
 
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