Miralax or BUST!

[Farmwife]

:hug:
I decided to make a new thread on this.
Sometimes (I think) when you have a long multi page thread you lose the abbilties to get the last minute questions through.

Ok, you know my many struggles with Grace and her daily BM's.
The GI made it clear she has to have 1 - 2 BM's a day.
Well through the course of many months I've tried diligently to tweak her amounts of miralax.
I added fiber to her daily routine. Each time the formula works for awhile. YA!!!
But.... then it stops and she goes 2-5 days in between. :voodoo:
As always I call the GI nurse and she says add more. If it's liquid she says take away.

My question is what could be happening to her GI track to make this happen?
She does get a LOT of water (8-10 cups). She gets fruit smoothies every morning and lots of exercise.
Also, when the stool does come out most of the time it's soft.
The nurse told me that's NOT constipation if it's soft!!! WHAT????:shifty:
Then what in sam hill is it?

Farmwife

 

[Patricia56]

soft sh*t...

sorry I could not resist. and it sounds exactly like what we heard over and over when BAdger was not in remission but the ped GI insisted he was.

You have my sympathies. I have no answers for you.

 

[my little penguin]

So sorry --
We r in the same boat.
Are you measuring actual oz.
Since cup size can vary and the amount drank from each cup.
Past two days I have filled a water bottle. 20 oz so I know when he finished that twice plus more .
I can say for DS at least the hyoscyamine seems to have made it better not sure why. If he has one dose he has trouble 2 doses no issues .
I would recommend a kitchen gran scale as well.
Since kitchen measuring spoon or the cap are not nearly as accurate.
Have u seen this app??
We track all if DS symptoms and meds including miralax/ BM etc on it.
It's free and does not need wifi to work all data is on your phone.
http://www.aboutkidshealth.ca/En/News/NewsAndFeatures/Pages/SickKids-first-mobile-app-IBD.aspx

The app is in iTunes

Good luck

 

[Keepingfaith]

I have a lot of issues with constipation from strictures-but like you said it isnt truely constipation like most would think because the stools are extremely soft and have mucus. When you do miralax you HAVE to find a balance and you can not stop it just because you feel cleaned out. It is best to have a maintenance dose and you can always add or subtract depending on frequency. My 'maintenance' dose has changed throughout my life[been using since I was eighteen months old and am now sixteen]. If she needs a boost you cold always ask about usig mineral oil. It is clear and tasteless and over the counter. I drink about two tablesppons on an empty stomach and by the end of the day I am cleaned out! I only us it when I haven't gone for more than five days and miralax has not helped.

 

[Farmwife]

MLP- we measure with teaspoons. I'll invest with a kitchen scale when we have the funds.

Keepingfaith- I always keep her on miralax. Never have I stooped. Good idea about mineral oil. I'll be calling the GI nurse (AGAIN) to ask for more advice. Maybe they'll be so tired of me, they'll do something about it. YA!!!!

 

[Farmwife]

sorry I could not resist.

:rof::rof::rof:
Oh no!!!!:eek2: What have we done!!!
Your turning into one of us!:tongue:
:dance::dance::dance:
SORRY

 

[Tesscorm]

No advice Farmwife, just sorry you and Grace are still have these problems!:ywow:

 

[crohnsinct]

Maybe they'll be so tired of me, they'll do something about it. YA!!!!

Thata girl!

 

[poppets mum]

Going through the exact same thing with Amy and have to keep adjusting her dose too.