Adults on Miralax can you help me

[Aboveallislove]

DS has horrible GI issues and is on maintenance of Miralax. He regularly takes 2 capfuls daily. He often gets tummy aches. I'm trying to determine if this could be cramping from Miralax. Usually the tummy ache is after he has drank 1/2 of the dosing in AM or after eating for about 5 minutes. And after about 5 minutes of food at breakfast he has to poop RIGHT NOW. He usually has 1 dose at 10ish and then the 2nd dose throughout the afternoon/evening. If I don't give him the 1 dose at breakfast when he is thirsty it's hard for him to drink it all. So I'm wondering:

1) If you have cramping when do you usually get it?

2) Do you feel the urge to poop so quickly after having consumed food?

3) Does this sound like Miralax cramping? CF pain? Something else??? It isn't horrible and usually the tummy ache goes away after his poop or shortly thereafter.

4) Anything else you can share re the cramping? Your typical bowel movements and stomach discomfort when dosing is right? Too high? Too low?

THANKS!!!

 

[Printer]

Hi Love:

I am sending you a private message.

Bill

 

[Grendel]

I have Double-DF508, so I guess I have typical CF digestive issues. I too take Miralax and never have cramping and no quick urges after eating either.

Where specifically is the cramping? Have you had your gallbladder removed? Do you eat fried or greasy foods?

I get cramps from obstructions developing if I don't take Miralax. I've also had my gallbladder (gb) removed, and if I eat greasy foods I get cramps and abdominal discomfort. Before the gb removal I would get cramps passing gallstones.

Hope that helps.

 

[Aboveallislove]

Thanks Grendel. It is my 3.5 year old son, but he usually indicates like his upper tummy. It often is before he's had anything solid, just 4 ounces of water or 6 ounces of Boost Essentials (which does have high fat), or his prunes and enzymes. He does usually have to poop and sometimes he looks like a baloon and has a lot of gas right then; others it is a huge poop, but it is like 5 minutes after. I know the GI track starts the second you put food in your mouth, but that seems strange and he says his stomach hurts. It is NOT severe pain (he's had that before) and when a back-up is starting I can usually tell that "my tummy hurts" is different b/c he is more uncomfortable. That's why I'm thinking this is Miralax cramping. He has his gallbladder but has had it ultrasounded b/c of severe GI issues and nothing wrong.

 

[rubyroselee]

Hi there,

Sorry to hear he's having these issues, but it could definitely be related to the Miralax. I recently just had my first partial obstruction that landed me in the hospital, and that was my first real digestive incident ever. So I also take maintenance Miralax. It has been a struggle finding a balance between too much Miralax and too little. If I take too little I get stomach pains of a blockage forming, and if I take too much I get cramping. I have found finally found the perfect amounts, but it has taken a few weeks to get it right.

When I was taking too much, I would typically get the cramping shortly after taking the dose. Sometimes the pain would come when I would eat breakfast (about an hour after my dose). My worst cramping used to come at night after my nighttime dose and I'd be in pain all night and having to get up to use the bathroom. I have had "regular" CF cramping from lack of enzymes here and there and in my opinion the cramping is very hard to distinguish from the Miralax cramping because they feel very similar to me. The one difference I could tell between the Miralax cramping and regular CF cramping is the increased bowel sounds with the Miralax. My stomach will gurgle and gurgle when it's the Miralax! When I get those gurgles, that's now when I know it's too much Miralax. I do not have any audible bowel sounds when it's just a CF stomach ache.

I sure hope that helps, because neither cramping is fun. It's just finding the sweet spot on the Miralax amounts.

 

[Aboveallislove]

Thanks Leah! I was hoping you'd respond b/c I know you were just going through this. The info re the noise helps alot b/c sometimes he does have that. I actually think it was he was getting backed-up again b/c after 5 days of tummy aches and his GI appointment where he could feel some stool (not alot--but given his amount of poop, I'd think there wouldn't be any too feel), I was thinking that might be it. He seems to have 3 good weeks and then 6 bad weeks, until it builds up too much. He was indicating the pain was on the top of his tummy--pretty high up. (Does that tell you anything re the pain when getting backed-up?) And the clincher was when I asked "do you have to go poop?" "No." "Do you have gas?" "No." "Does it feel like the poop is stuck?" "Yes" And then next day when just asked why his tummy hurt he said "the poop is stuck" and "I need milk of magnesia." That's what we do when he gets backed-up--up the Miralax and do a 5 day hit of milk of magenisa. Yesterday was day 2 of it and he had no tummy aches yesterday. Hoping that's it. . . Let me know if you think of any other signs you can share for the different pains, either when, where, pain, etc. How to describe? Stool changes, etc.? So I can try to ask him more questions to figure out what it is. he's 3.5 so it's soooo hard not knowing what's going on and what I need to do to adjust.
Bill: Thanks too! I couldn't find and am PM.

 

[TreasureGoddess]

My son also has GI issues with all the other fun CF stuff. UGH! We go back and forth between 1/2 cap and 2 capfulls of miralax daily. It's more of a guessing thing, when my son's bm's are going good (ropey & 2-3 daily which is his "normal") we stick with 1/2 capful daily. It also seems to help if we do the dose after school around 3pm, not first thing in the am and not before bed. Less issues with GI when he's up walking about and playing with neighborhood kids after school. All that movement seems to help the miralax work without cramping. If he starts to get backed up, we go up to 1 cap twice a day and for full cleanouts 1 cap hourly for a day to blast it all out.

Have you talked with your GI doc about amitiza? For my son combining this med with miralax has been a lifesaver and much less GI issues. It also works to pull liquid into the digestive tract, but it works in a different way than the miralax. The two combined really help with maintenance. Good luck!