backed up!

Ratatosk

Administrator
Staff member
When DS was a baby, he'd have issues where his tummy would get distended and he'd wouldn't want to eat, would throw up. When it first happened at 4 months, his doctor ordered an xray where they found a LOT of stool in his colon. So we'd treat him with milk of mag twice a day to get him cleaned out when his stooling and feeding would slow down.

When he had his obstruction a few years ago, the first thing he wanted to eat was peanuts and sunflower seeds. And his doctor told us a story about a patient of his who ate an entire can of mixed nuts and got an obstruction and required surgery. And they found a nutty, waxy substance lodged in her intestines -- a big old pile of mixed nuts. So he suggested limiting peanuts and nuts. So DS gets a small package for a snack at school and a small dish for afternoon snack. Thats it because otherwise if he overdoes it -- his tummy will hurt, he won't feel hungry and he has vomited on occaision. Better safe than sorry for us.
 

Ratatosk

Administrator
Staff member
When DS was a baby, he'd have issues where his tummy would get distended and he'd wouldn't want to eat, would throw up. When it first happened at 4 months, his doctor ordered an xray where they found a LOT of stool in his colon. So we'd treat him with milk of mag twice a day to get him cleaned out when his stooling and feeding would slow down.

When he had his obstruction a few years ago, the first thing he wanted to eat was peanuts and sunflower seeds. And his doctor told us a story about a patient of his who ate an entire can of mixed nuts and got an obstruction and required surgery. And they found a nutty, waxy substance lodged in her intestines -- a big old pile of mixed nuts. So he suggested limiting peanuts and nuts. So DS gets a small package for a snack at school and a small dish for afternoon snack. Thats it because otherwise if he overdoes it -- his tummy will hurt, he won't feel hungry and he has vomited on occaision. Better safe than sorry for us.
 

Aboveallislove

Super Moderator
Flagile is the "go-to" drug for intestinal issues. Higher doses when you have something that you shouldn't, i.e., friend was on it after getting a parasite in Russia. (She said it was soooo much of an improvement she was ready to name her first born Flagile.) Lower dose if the "normal" bad bacteria in your intestines "overgrows". So with our son, for 1.5 years he was having issues that we put down to only a back-up, but a back-up can cause bacterial overgrowth which can then cause other issues/related issues as well. The med is NASTY, but it really helped. If you google "bacterial overgrowth wiki" you can read about it. Apparently the Flagile kills off enough of the "normal" bad bacteria to get the balance back in check. We then do Culturelle to keep the good bacteria at a good level. Still not convinced this was the silver bullet, but 5 of his symptoms went away and his tendancy to back-up is more controlled/controllable with lower doeses of Miralax and no milk of magnesia.
Good luck!
 

Aboveallislove

Super Moderator
Flagile is the "go-to" drug for intestinal issues. Higher doses when you have something that you shouldn't, i.e., friend was on it after getting a parasite in Russia. (She said it was soooo much of an improvement she was ready to name her first born Flagile.) Lower dose if the "normal" bad bacteria in your intestines "overgrows". So with our son, for 1.5 years he was having issues that we put down to only a back-up, but a back-up can cause bacterial overgrowth which can then cause other issues/related issues as well. The med is NASTY, but it really helped. If you google "bacterial overgrowth wiki" you can read about it. Apparently the Flagile kills off enough of the "normal" bad bacteria to get the balance back in check. We then do Culturelle to keep the good bacteria at a good level. Still not convinced this was the silver bullet, but 5 of his symptoms went away and his tendancy to back-up is more controlled/controllable with lower doeses of Miralax and no milk of magnesia.
Good luck!
 

Havoc

New member
It's flagyl, and a commonly used antibiotic for C-diff, although it can treat a host of problems including trichomoniasis and amebiasis. It's also carcinogenic in mice FWIW.
 

Havoc

New member
It's flagyl, and a commonly used antibiotic for C-diff, although it can treat a host of problems including trichomoniasis and amebiasis. It's also carcinogenic in mice FWIW.
 
My son's got severe delay in gastric emptying, which causes lots of days of backups and pain, nausea & such. One thing our GI doc put him on was Amitiza. It helps move things along. We also do 2 caps of miralax daily. LOTS of liquids also helps. Please keep asking questions and look at new GI docs if you don't feel satisfied. My son was in severe pain for almost 6 months until we moved to another cf center. Now he's doing MUCH better and only has bad GI days once in a while instead of a constant pain that had him laying on the couch moaning. Good luck!!
 
My son's got severe delay in gastric emptying, which causes lots of days of backups and pain, nausea & such. One thing our GI doc put him on was Amitiza. It helps move things along. We also do 2 caps of miralax daily. LOTS of liquids also helps. Please keep asking questions and look at new GI docs if you don't feel satisfied. My son was in severe pain for almost 6 months until we moved to another cf center. Now he's doing MUCH better and only has bad GI days once in a while instead of a constant pain that had him laying on the couch moaning. Good luck!!
 

LittleLab4CF

Super Moderator
To anybody with CF knows is transmembrane regulator gene dedects mess with water, salts and whatver passing through the cell membranes. Different mutations effect CFers to a greater or lesser extent. At 62, my mutations are not as severe as a 15 year old waiting on a lung transplant. My mutations effect everything below the diaphram including a pancreas that is gone. I take some serious narcotic which is hard on bowel motility. I have lived long enough to develop parkinson's and it and the meds for it take their hit on the bowels.

Last year I went 6 weeks without a bowel movement. It was expensive involving lots of doctors but found what works for me. Amatiza prevents your large bowel from reabsorbing every drop of water in your feces. I take 300 to 600mg of magnesium, 1-2 bisacodyl sodiumand titrated an appropriate amount of Miralax. Also do something physical. The motion of walking or pushing a vacuum is good. I add a strong cup of coffee daily and if I get off schedule I will amp up the coffee intake. I don't think this helps regularity but I suppliment B,D,E and K, all oils. A GI doctor will frown at stimulant laxatives and they have good reason. Most CF doctors seem to be pulmonologists and have been no help. Take bisacodyl vacations is the compromise I have made with my GI doc. Do it all or suffer in ignorance. Actually, I invested a lot of money and pain on one possible solution. Hope it helps.
 

LittleLab4CF

Super Moderator
To anybody with CF knows is transmembrane regulator gene dedects mess with water, salts and whatver passing through the cell membranes. Different mutations effect CFers to a greater or lesser extent. At 62, my mutations are not as severe as a 15 year old waiting on a lung transplant. My mutations effect everything below the diaphram including a pancreas that is gone. I take some serious narcotic which is hard on bowel motility. I have lived long enough to develop parkinson's and it and the meds for it take their hit on the bowels.

Last year I went 6 weeks without a bowel movement. It was expensive involving lots of doctors but found what works for me. Amatiza prevents your large bowel from reabsorbing every drop of water in your feces. I take 300 to 600mg of magnesium, 1-2 bisacodyl sodiumand titrated an appropriate amount of Miralax. Also do something physical. The motion of walking or pushing a vacuum is good. I add a strong cup of coffee daily and if I get off schedule I will amp up the coffee intake. I don't think this helps regularity but I suppliment B,D,E and K, all oils. A GI doctor will frown at stimulant laxatives and they have good reason. Most CF doctors seem to be pulmonologists and have been no help. Take bisacodyl vacations is the compromise I have made with my GI doc. Do it all or suffer in ignorance. Actually, I invested a lot of money and pain on one possible solution. Hope it helps.
 

LittleLab4CF

Super Moderator
Sorry, after all I pontificated on I forgot good old probiotics. Choose your poison here, Activia to dry scoopfuls of culture. You need to titrate this as well depending on your colon health, antibiotics etc. I am a lot more regular when I am well hydrated so I should have put water high on the list. Also set aside two times each day to set on the toilet and try to have a bowel movement.
 

LittleLab4CF

Super Moderator
Sorry, after all I pontificated on I forgot good old probiotics. Choose your poison here, Activia to dry scoopfuls of culture. You need to titrate this as well depending on your colon health, antibiotics etc. I am a lot more regular when I am well hydrated so I should have put water high on the list. Also set aside two times each day to set on the toilet and try to have a bowel movement.
 
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