Yup--laxatives/softeners etc reviews

[SaraNoH]

I thought we needed a single place were we could post reviews/thoughts on any laxatives, stool softeners and etc that people have used. As we all know, this can be a big (and potentially) dangerous aspect of CF care and it's good to have options.


I know many on this forum have had obstructions, and they are not pleasant. Personally, my experience has been a nasty one, with a horrendous obstruction in high school that landed me in the hospital for a week with recurring DIOS type symptoms for then on. I don't know about you guys, but I'm paranoid about that happening again (more so than about my lungs).

So, if you could post what kinds of things you've taken for obstruction prevention, how effective it was, how reliable, cost effective, convenient, comfortable etc, that would be wonderful!

Happy bowel health!

 

[Jellybaby]

Hey Good idea!
Not many people talk about this.
I started having problems this year, although I would be using the toilet normally alot of times when I would eat I would feel full and that has sometimes left me gagging and feeling really really nauseous!

Anyways I started taking senokot which helped for a while but now I know when I'm getting blocked up (I get it really high up so even if I'm using the toilet normally there's still stuff blocked high up)
and when I do I use movicol sachets for a good clear out and this works well....although make sure your near a toilet for a good week! hope this helps

 

[Ratatosk]

When DS was a baby his appetite would decrease. He'd still be stooling; however, it wouldn't be well formed. So we'd dose him with milk of mag for a few days to get him cleaned out. About 4 years ago he ended up in the hospital with a blockage caused from adhesions from surgery as a baby. He had to have surgery to clear that obstruction. Afterwards he didn't go again and developed another blockage. They tried golytely and later mucomyst orally. The mucomyst sorta just broke everything loose after what seemed like forever. Nasty smelling stuff, but I know a friend of mine's son takes it orally on regular basis -- maintenance dose --- to clear the crud.

 

[cabadie1]

I give my 5 year old a half of capsule of miralax daily to keep things moving. I have done this since she was 2, and it definitely helps.

 

[Rebjane]

Prune juice soda......one half prune juice to one half diet coke in a cup with a straw. My daughter drinks one a day; has since she could sip from a straw..Used to be half prune juice half apple juice when she was a toddler.

Miralax if she gets backed up.....

 

[heidikk]

not sure if it's in the same category, but I give pedialyte on any day over 80 degrees

 

[Printer]

The issue is mucus. When we swallow mucus, even in our sleep, it ends up in the colon where it combines with the stool. It is then a glue that sticks to the walls of the colon. This build up continues and continues upon itself.

Daily use of Miralax will allow this to be released.

Bill

 

[nmw0615]

I take two fibercon a day and have since I was in the third grade and had to be hospitalized for an obstruction. When I go on vacation, because stuff like that really messes with me anyway, I add a cup of Metamucil every night. This routine usually works like a charm, but if I haven't gone for two days, I start taking the miralax.

 

[cheerfulpuppies]

I used to be "irregular" with my enzyme compliance when I was younger so I have never really had a blockage issue. Even when I was taking regular vitamins with iron I didn't have any problems until I took prenatal vitamins. Ever since then I take 1 colace and 2 senna daily. If I have not gone in a few days I will use miralax with warm prune juice at night. My cf doctor also suggested miralax on a daily bases for preventative. But the colace & senna with my vitamins work well for now.

 

[rheamc]

I take Miralax on a daily basis and it has been a life saver. I can't believe I didn't know about it earlier!

 

[Printer]

Everyone who coughs up mucus, should be taking Miralax or an equivalent.

Bill

 

[SaraNoH]

I'm on the Miralax bandwagon too. Buuuut I didn't like how expensive it was, so I googled around for polyethylene glycol 3350 and bought LaxaClear, which is Kirkland's version--a bit cheaper BUT I don't feel it's as reliable as Miralax. It'd take days before I noticed a difference, whereas for me Miralax works next-day without fail.

Right now I'm taking a full dose of LaxaClear every other day (if I can remember). It seems to be working better when I'm consistent, but I think I'll just go back to Miralax next time.

Anyone have good recs for more portable options? i.e. tablets etc and not powder. Something discrete and easy to take. I travel quite a bit an lugging a whole bottle of powder can be annoying.

 

[MichaelL]

I have had a lot of issues this year with digestion and blockage. I'm not sure if I have actually had DIOS or my symptoms are just very much like it. When I'm clogged up and need to be cleared out, I drink 8 to 10 litres of PegLyte (also called GoLightly). Depending on how clogged I am, I sometimes need even more. This is a significant undertaking and I usually set aside a whole day to do this.

To keep myself clear ongoing, I am using a combination of one dose of Peg Flakes (PEG 3350) a day and 45 ml of mineral oil. The Peg flakes by themselves didn't work for me -- even using them twice a day. I was told that for the Peg Flakes to work, you need to follow the dose with lots of water. I usually try to drink half to 3/4 of a litre of water afterwards. Mineral oil can be dangerous if you get it in your lungs. As such, I think they don't like using it for children and don't suggest taking it before bed.

 

[LittleLab4CF]

SaraNoH,

It is somewhat amazing how limited medical professionals are about something like using Mirilax or PEG. I have been using PEG for forty years now, although it has been recent years that I use it consistently. As for reliability of PEG 3350 I share some of your concern over quality and safety of the product. About five years back an offshore pharmaceutical company mixed industrial PEG with PEG 3350 resulting in the deaths rumored to be in the hundreds.

Without going into all the reasons to be careful with the source of PEG, this is not worth going really cheap on. I’m not talking Kirkland and other store brands, when you find something that is too good to be true....

When the specter of PEG contributing to gassy stools came up a while back I studied a number of PEG studies as a bulking laxative. It is fact that it doesn’t change chemically nor does the body metabolize it. Surprisingly though, we do absorb some of the PEG and excrete a considerable amount in our urine. A “considerable amount” being somewhat subjective since it is hard on the kidneys at an extreme concentration. The daily dosing of Mirilax can be multiples like four or five doses and your kidneys start barking back at the amounts it has to filter. Studies don’t really cover the type of chronic use of PEG like is in store for a lot of Cfers. So far I haven’t found anything better.

Lactulose, however is nature’s version of a “PEG”. It has the added punch of being slightly irritating or stimulating in effect. It has about the same weak stimulant effect as Milk of Magnesia. Lactulose works like PEG in that it expands its chemical matrix to capture enormous amounts of water and keeps it. It has the reputation of being a little gassy, but it is inert like PEG. Be aware that Lactulose may be prescription which may make it expensive or maybe a savings.

I could go on, maybe I will.

LL

 

[LittleLab4CF]

Sorry, for travel Movocol (sp) is PEG and electrolytes in packets and capsules. Mirilax also sells packets. As to one brand over another I too have found Mirilax superior to all the store brands. If I were to guess about a difference, milling and drying methods for PEG easily affect how well it works. Travel while in constant abdominal distress is NOT worth the free miles.

The dose of mineral oil is a trick I keep forgetting. Introducing it slowly is in order, but from DIOS stressed infants to old CFers, mineral oil can literally change the quality of bowel transit.

LL