4-year-old with chronic constipation despite Movicol and picosulfate, any advice?

[PeppySnail]

Hey, so I have a 4 year old, ever since birth he's struggled with his bowels. He's been on movicol since he was a baby, he can go up to 8 sachets a day if necessary but I try to avoid such a high amount. I followed the disinpaction routine I was given a long time ago and it worked but my child always seems so go straight back to struggling, I'm on about the shaking, sweating, screaming, crying.. the lot.. eventually they said keep up with the movicol and also give him lactolose, the lactolose never worked, didn't touch him at all.. after a lot of back and fourth they done a bowel biopsy to test for a certain condition but that came back absolutely fine. So after that they said keep with the movicol adjusting the doses as I see fit but also give him sodium Picosulfate. He's allowed up to 10ml of the sodium Picosulfate.. now when he has high doses of both what he passes through eventually ends up being very mucusy, this usually comes with a very solid bowel movement. I feel awful.. he's now to the point he doesn't even want to go and he ends up holding it, no matter what I do he can still go such a long time without going and when he does even if it's regular if it's either too runny he gets extremely sore or it's so solid he's in agony and usually bleeds a tiny bit.. now I've tried giving him lots of water, vitamins, foods that would usually help to soften poos or cause you to go.. I've tried leg movements, belly movements, baths etc.. absolutely nothing helps and it's always the same outcome and the hospital always say the same thing of keeping up with the doses and he should grow out of it which yes I agree he may but it's not helping him, he doesn't want to go, it's painful, uncomfortable and in the long run I don't want his body to come reliant on the medication, particularly the Picosulfate.. also when he does end up going he pees at the same time, as if it's pushing on his bladder/a strong pain response, does anyone have any other recommendations or advice I could try.. I feel like I'm losing this battle and mentally its so exhausting.. help needed please

Have you had a referral to a paediatrician or bowel/bladder team? Has he ever had an x-ray on his bowels?

Yes he's been under both and I believe is currently still under the bowel/bladder team at the hospital but despite constantly asking for appointments/follow ups I always get the same response of the hospital being behind with patients and I will get an appointment as soon as one becomes available and then after speaking to them I just get the same response of "he will grow out of it" "keep up with the medication" or my favourite line so far "hes not the only child going through it, some adults still need laxatives to go to the toilet we just got to hope he will grow out of it". I don't believe he's ever had an x-ray only been asked about his eating, drinking, stool samples and the bowel biopsy he had.

I would recommend joining the movicol mummies group on Facebook. It’s a wealth of information. Also there are private drs on there recommended who specialise in this.

What they tend to say on the group is that after disinfection don’t stop the movicol or reduce it too much. Gradually do it. The bowel takes a long long time to shrink back to normal size. So you need to keep them on it while it does this. We spent a whole 6 weeks going from 8 sachets down to 4 in a summer holiday. The stayed on 4 for months and then now 2 years later down to 1/2.

It’s ok to be on it long term. What’s worse is letting them get constipated and it stretching the bowel.

Has he had a coeliac screen?
The bowel biopsy will have ruled out Hirschsprung’s disease.

I would redo the disempaction routine. What did you do afterwards for a maintenance plan? He will need meds for a good while if his bowel has been stretched with poo.

I suspect he needs another disimpaction, though obviously none of us can properly assess your child. But, as a general rule, they only grow out of it if you can keep the poo soft and coming out regularly, so the stretched up rectum can shrink back down and get proper function. I presume you’re familiar with the Eric website?

I will have a look into that group, it's hard to find people that are or have gone through the same thing.

I've done exactly like you've said, my partner who's also been through this and knows the ins and outs has helped massively but we still got a blank wall sometimes. It seems to be you will clear the impaction completely and keep up going for a long period of time but within a week he's back to being completely bunged up and in agony.. even so if you keep him going to the point he's having the runs consistently with no change despite not changing that routine he gets all impacted again and sometimes worse than before.. part of me feels there's another reason as to why it's happening but obviously I'm no medical professional.. but that definitely makes sense. I'll look at that page as soon as I can

I was just about to ask the same ! My granddaughter was chronically constipated with all the above problems and she became terrified of pooing,she was finally diagnosed with coeliac disease just from her blood test results…so no biopsy necessary.
Now almost 2 years later she is a different child but she still has a mood change when she needs a poo .

Yeah I'm familiar with the Eric website, I've just replied back to another comment and I mentioned the disinpaction but incase you don't see it I'll just briefly explain here.. he's had many disimpactions and both proven to be that and no matter how long you keep up with that maintenance without any change he's still getting blocked up very very quickly and there's only so many sachets/Picosulfate I can give him.. I'm not sure whether there's something else underlying or this is just how it is? I've never been through this, he's my first child and despite sticking exactly to what I'm told to do he just always seems to go backwards very fast

I've actually never heard of this screen? Yes that was the disease they ruled out, I couldn't remember the name. I'll have a look up about this screening as it seems to be the one thing that I don't think has actually been done. And kept up exactly how it's been recommended by his doctors with the maintenance, as said in previous comments I feel like I'm fighting a losing battle but I'm not sure if it's normal or not? (Read other comments if possible) I appreciate the response!

When you do the disimpaction, how many sachets a day are you going up to, and what is being produced at that peak point? Because it basically needs to be water. And then you very very slowly reduce the dose back down, until things are moving consistently.
Please don’t stress about him becoming reliant on the medication - the most important thing is clearing any blockage and then keeping the bowels moving.
It might be that movicol isn’t great for him for maintenance - for my DS, we could never achieve a consistency that worked to
manage appropriately. He was changed onto
sodium docusate and that worked a treat for
him. He took it for 6 years, and eventually weaned off it age about 11, and now does not have any difficulties.

Currently he's on 4 but I will be increasing that. According to the team he's under I'm allowed to go up to 8 sachets a day which he has been on previously. The consistency will go exactly as you described like water, I can keep up with the regular doses whilst it's at that consistency too but sometimes it will go back to being built up again within a few days.. could I increase the movicol further or will I be better off trying to discuss alternative medication for him for the maintenance? He's been on movicol since he was a wee baby and it's always the same results during the maintenance

My son the same, diagnosed with coeliacs disease 18 months ago and constipation was one of his main symptoms.