Re: Does anyone use miralax and is it legal?

[Guest guest]

Hi ,

Miralax has been a life saver for me because, for the longest time, it was

the only thing that helped me go as I suffer from chronic constipation. My stools are very hard so miralax helped in that it brings water to your colon and

helps everything pass through. If

her stools are usually very soft, miralax might not

be the best thing for her. You

could always try it once, in a small amount, to see. Then progress or skip a day or 2… You’ll have try

different things.

Eventually miralax

didn’t work anymore for me and I don’t know why. What I take now is milk of magnesia. Because I suffer from acid reflux I

could never take a large dose of magnesium as this too is suppose to help. The difference with milk of magnesia is

that is soothes acid reflux and alleviates constipation. Double-wamo

for me )

GERDS and chronic C.

SCD 2 yrs

Does anyone

use miralax and is it legal?

I have 21 yr.old daughter with Rett syndrome. Have been on SCD for 5

months to see if will help with intestinal pain and food intolerances.

She is completely dependent on enemas and digital stimulation to pass stool and

gas. Have been to emergency room a couple of times since on the diet when stool

just not moving thru (her stools are never hard. They are usually soft and

formed but just don't move thru well resulting in lots of pain and self abusive

behaviors)

We just were at ER room last night. They suggested miralax which alot of girls

with Retts use. We did try it probably 6 - 7 years ago and seemed to cause her

alot of discomfort and made her stools too loose which is a problem for her.

Wondering though if we need to try it again.

Curious what your thoughts are and for those of you who use it, does it cause

alot of gas or other issues for you .

Thank you so much.

[Guest guest]

I've been on Miralax for just over six years, as long as I've had functional

upper GI disorders that also affect digestive motility. I started off using

prescription Miralax, then the generic, and now the OTC version. I didn't do so

well with the generic prescription version but did better with the original

Miralax and now the OTC version.

My experience has been positive. I have no side-effects from it. Just the

positive benefit of helping keep things moving. It is an osmotic laxative, works

by retaining water in the stools so your intestines still work to the best of

their ability and don't get lazy. Miralax is tasteless (to me, anyway), so I

have it in diluted fruit juice or in water, depending on what I'm having for

breakfast, which is my preferred time to drink it. I use the full 17-gram dose,

once a day. That works well for me; I rarely get really loose stools, just a

general mushiness which moves easily yet is controllable.

I also need to supplement magnesium, partly for muscle issues (and I'm

deficient), but also to help keep my intestines moving things along. I was also

on a low-dose motility medication, Zelnorm, for several years, until the FDA

pulled it. I've been able to do without it, thanks to being on SCD and

continuing to use Miralax and taking extra magnesium. I miss Zelnorm, as it

really helped get my entire digestive tract moving in sync, especially after a

surgery. Haven't yet felt desperate enough to find overseas sources of Zelnorm.

Since my digestive motility issues are neurological in origin, I still get bouts

of more severe constipation despite eating the same foods and using Miralax and

supplementing magnesium. It is a regular cycle of 10 to 14 days for me [sigh],

and I get a flare-up of my other upper GI symptoms along with a neurological

impact. I keep water enemas on hand for the really bad times; usually I just

live with the discomfort for a few days until things get moving again, upping my

magnesium fpr a few days and eating a few prunes (normally I limit fruit because

of blood sugar issues).

I did find that during the first year on SCD I went through episodes of severe

constipation, even though taking Zelnorm and using Miralax at the time. I

decided it was part of the healing process. By the end of the second year I

stopped getting the bouts of really severe constipation; things just settled

into what has become my " normal " routine. Your daughter should start to really

improve when she reaches the one year on SCD mark.

I keep hoping I can taper off of Miralax one of these days. I try periodically,

but so far haven't been successful. My doctors swear that Miralax is safe to

use over the long-term. So far, so good for me, although I do work with my

doctors and get bi-annual checks on my blood levels, making sure all is well.

And I keep on eye on recent research, looking for any studies that find issues

with long-term use of Miralax. So far, so good.

At least Miralax has worked very well for me. I do deal with bloating because

of the poor motility, and gas in the descending colon comes and goes depending

on what " new " foods I've tried to eat lately or whether I'm in a symptom flare.

Overall, the longer I've been on SCD, the better things have been when it comes

to constipation.

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological & spinal deterioration 3+ years

>

> I have 21 yr.old daughter with Rett syndrome. Have been on SCD for 5 months to

see if will help with intestinal pain and food intolerances.

> She is completely dependent on enemas and digital stimulation to pass stool

and gas. Have been to emergency room a couple of times since on the diet when

stool just not moving thru (her stools are never hard. They are usually soft and

formed but just don't move thru well resulting in lots of pain and self abusive

behaviors)

> We just were at ER room last night. They suggested miralax which alot of girls

with Retts use. We did try it probably 6 - 7 years ago and seemed to cause her

alot of discomfort and made her stools too loose which is a problem for her.

> Wondering though if we need to try it again.

> Curious what your thoughts are and for those of you who use it, does it cause

alot of gas or other issues for you .

> Thank you so much.

>

>

[Guest guest]

Thank you so much for your emails on the miralax. Sounds like it is definitely

a necessity for some people. You make a good point since her stools usually are

fairly soft that maybe it might not be for her. Besides making stools softer

does the miralax help with peristalsis?

Haven't heard any definite on whether miralax is legal or not in regards to the

diet. But seems like even if it is " illegal " that there are situations where it

is needed to prevent a greater problem. What is it about miralax that would make

it illegal?

> >

> > I have 21 yr.old daughter with Rett syndrome. Have been on SCD for 5 months

to see if will help with intestinal pain and food intolerances.

> > She is completely dependent on enemas and digital stimulation to pass stool

and gas. Have been to emergency room a couple of times since on the diet when

stool just not moving thru (her stools are never hard. They are usually soft and

formed but just don't move thru well resulting in lots of pain and self abusive

behaviors)

> > We just were at ER room last night. They suggested miralax which alot of

girls with Retts use. We did try it probably 6 - 7 years ago and seemed to

cause her alot of discomfort and made her stools too loose which is a problem

for her.

> > Wondering though if we need to try it again.

> > Curious what your thoughts are and for those of you who use it, does it

cause alot of gas or other issues for you .

> > Thank you so much.

> >

> >

>

[Guest guest]

I also wanted to ask is there ever a possiblity that someone can regain pushing

stools out on own again after being dependent on enemas and digital stimulation

for several years by trying miralax? My daughter is 21 with rett syndrome and

this has been her situation for 5 years now

> >

> > I have 21 yr.old daughter with Rett syndrome. Have been on SCD for 5 months

to see if will help with intestinal pain and food intolerances.

> > She is completely dependent on enemas and digital stimulation to pass stool

and gas. Have been to emergency room a couple of times since on the diet when

stool just not moving thru (her stools are never hard. They are usually soft and

formed but just don't move thru well resulting in lots of pain and self abusive

behaviors)

> > We just were at ER room last night. They suggested miralax which alot of

girls with Retts use. We did try it probably 6 - 7 years ago and seemed to

cause her alot of discomfort and made her stools too loose which is a problem

for her.

> > Wondering though if we need to try it again.

> > Curious what your thoughts are and for those of you who use it, does it

cause alot of gas or other issues for you .

> > Thank you so much.

> >

> >

>

[Guest guest]

Hi ,

Miralax is totally SCD legal.

Several people on the diet use it.

GERDS and chronic C.

SCD 2 yrs

Re: Does

anyone use miralax and is it legal?

Thank you so much for your emails on the miralax. Sounds like it is

definitely a necessity for some people. You make a good point since her stools

usually are fairly soft that maybe it might not be for her. Besides making

stools softer does the miralax help with peristalsis?

Haven't heard any definite on whether miralax is legal or not in regards to the

diet. But seems like even if it is " illegal " that there are

situations where it is needed to prevent a greater problem. What is it about

miralax that would make it illegal?

> >

> > I have 21 yr.old daughter with Rett syndrome. Have been on SCD for 5

months to see if will help with intestinal pain and food intolerances.

> > She is completely dependent on enemas and digital stimulation to pass

stool and gas. Have been to emergency room a couple of times since on the diet

when stool just not moving thru (her stools are never hard. They are usually

soft and formed but just don't move thru well resulting in lots of pain and

self abusive behaviors)

> > We just were at ER room last night. They suggested miralax which alot

of girls with Retts use. We did try it probably 6 - 7 years ago and seemed to

cause her alot of discomfort and made her stools too loose which is a problem

for her.

> > Wondering though if we need to try it again.

> > Curious what your thoughts are and for those of you who use it, does

it cause alot of gas or other issues for you .

> > Thank you so much.

> >

> >

>

[Guest guest]

Miralax

is SCD-legal, and all of my doctors swear it is safe to use over the long-term.

I keep an eye on research, so will post something if something turns up

that indicates there are some newly-discovered risks.

I

don’t know what the outcome is on reestablishing peristalsis after years

of using enemas so that the colon and small intestine become lazy and

ineffective. I do think there should be a good chance of improvement as

the gut ecology is restored, even if there isn’t a total cure. Or

at least we have to hope that there can be improvement.

I

had a conversation with my gastroenterologist on this issue just after my

diagnosis as he explained my chronic symptoms to me. In my case he didn’t

think I’d see significant improvement with constipation as my problem is

functional, involving the nervous system. However, I do feel that my

intestinal peristalsis has actually improved the longer I’ve been on SCD,

even if I still continue to use Miralax and magnesium, and still need to use a

water enema once every three or four months when my nervous system goes cranky

for a day or two.

I’m

not too familiar with Rett Syndrome, so don’t have an opinion on the

possibilities. But I do know, from experience and my research in the

medical literature and databases, that the body has a marvelous ability to heal

itself, given the chance. SCD does work wonders, and even if our bodies

don’t reach a “cure” they at least improve considerably.

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological & spinal deterioration 3+ years

>>>>>>>>>>>>>>>>>>>>>>>

>

I also wanted to ask is there ever a possiblity that someone can regain pushing

stools out on own again after being dependent on enemas and digital stimulation

for several years by trying miralax? My daughter is 21 with rett syndrome and

this has been her situation for 5 years now