Those on movicol long term, what does that look like for your little one?

[Lenor]

We followed the disimpaction routine in May, which worked well and took about 3 weeks. Since June our daughter has been on 2 sachets of movicol per day. She has had to go back into nappies (prior to movicol she was toilet trained for 12 months, but soiling whenever she needed a poo) and she poos in the nappy several times a day. Each day I’m satisfied she has enough poo to make up one ‘normal’ poo… but why is it happening multiple times a day? The poo is soft like cow pat, but any time we try and reduce the dose, even by a quarter of a sachet, she stops pooing at all. She still seems to get basically no warning that she needs a poo, which apparently is normal as her bowels were stretched when she was constipated.

How long was it before your little ones were able to poo on the toilet again? She’s meant to be starting school next September and given that we’ve made absolutely no progress in the past 4 months, I’m terrified that she’s still going to be having multiple poo accidents a day when she starts school. She was 3 in May. Toilet trained just after her 2nd birthday and at first, did poos and wees on the toilet no problem. Then slowly as she became more and more constipated, the poos became less and less reliably on the toilet. I’m so worried for her, and have no idea what the process should look like (our continence team has a 12 month wait!). Thank you if you’ve gotten this far. X

I thought that with children it shouldn't be used longer than a few weeks; it should just be used to remove the impaction and then they could use Lactolose for longer term. I could be wrong though- and it's due to electrolyte imbalance (the soft poops).

You need to wean off and let her get use to the feeling of needing to go "poop" again. It's how the learn they need to use the toilet- the full feeling or funny bellly feeling. It may be that you need to allow it to happen using a nappy and then retrain with the potty.

But defo ask a doctor as she shouldn't be on it long term, especially since June.

That's totally not true. Many kids are on it quite long term.

I have a child who had been on it for about 15m now. Only one sachet a day but our latest wean attempt was an awful failure. She had other quite complex medical issues but there's been no concern expressed about her being on it long term and I know many other kids that are on it for very long times as well.

OP, my daughter has poo continence issues as well, but hers is likely to be a bit more complicated than just movicol.

If reducing the movicol by only a tiny amount means she doesn't poo at all, and she's having sloppy poos, I wonder if she's still having overflow around impacted poo, and may actually need another clear out? May be worth having a look at www.eric.org.uk

I'd wonder about encopresis as the previous PP suggested. These symptoms are classic encopresis.

If an xray establishes it isn't I would talk to the doctor about trialling a different laxative, not a macrogol.

FWIW my son was on movicol for over a decade and nobody was concerned.

My DS was on it for years too OP, he had very similar symptoms to your DD. He also took pico-sulphate at night, and movicol in the morning.

As a PP said the poo you are describing does sound like overflow.

It was so difficult to solve the issue with DS, took seeing two different consultants to get the problem fixed, the first one was awful quite honestly, very off hand manner, just said use suppositories, no way could I do that, it upset my son etc, so we struggled on for a few years.

Saw another second paediatric gastroenterologist was absolutely amazing, got to grips with the problem straight away, give by pressing his tummy, DS had allergy tests just to check that wasn’t the cause. Prescribed meds, mentioned above, that my son was on for quite some years.

THIS IS the important bit….The consultants rule of thumb was, one year of medication for every year of constipation.

my DS is an adult now, never has any issues whatsoever, goes to the loo fine, no meds, no marks in underwear.

so please don’t worry it can and will be sorted out.

if you are on the south coast and want the name of the consultant we saw just PM me, we saw him privately, he was wonderful and changed our lives, I felt desperate by the time we saw him.

good luck

I really feel for you, OP, it’s miserable. But it can get better.

It sounds like she isn’t fully disimpacted, and that the frequent pooing is in fact leaking around the blockage.

Go back to your GP and (a) say you need another disimpaction. Did DD have a stimulant medicine like senna or sodium picosulfate the last time? You need to ask for this. (b) insist on a referral to a gastroenterologist. Emphasise the quality of life issues and the impending school start.

Contact ERIC, as a PP suggested. They have nurses on their helpline and are very helpful. They’re very busy so you might have to keep trying.

There are some simple but very important self help things you can do. Make her sit on the loo for ten minutes half an hour after breakfast and dinner. This is when a poo is mostly likely to occur so it helps with clearing out. Give her a stool to put her feet on so her knees are raised above her hips.

Make her drink lots of water - this is vital for the meds to work properly. To give you an idea, when my DD was 5, her specialist told her to drink 1.5 litres a day.

Kids can obviously be resistant to all of this sort of thing so do what you need to do - rewards etc, even if that’s not usually your parenting style.

Join Movicol Mummies on Facebook - fantastically useful and knowledgeable group.

It all takes time, energy and persistence but you can tackle it.

@Basilthymerosemary is talking nonsense. My DD has been on Movicol for four years, and is under the care of a specialist consultant.

Good luck and keep us posted.

Oh and to answer your question, my DD is now 7 and does normal poos but this is after specialist involvement, everything I’ve described above and a couple of really aggressive disimpactions. And even then I still have to be really on the case with water, medication and toilet sits.

Thanks so much everyone. I am concerned myself it could be overflow, although it’s very different from the overflow we were experiencing prior to disimpaction. This isn’t a small amount of poo, it doesn’t smell horrific, it isn’t sticky/ like tar/ very runny.

I suspect that either it’s overflow and she’s still constipated, or that she’s on such a high dose that the reason it’s multiple times a day is because it’s diarrhoea and every time she eats she needs to poo.

but I’m terrified to change our dose incase I’m wrong in either instance! Disimpaction was terrible and she missed 3 weeks of childcare.

she’s never had a scan so I think it does sound like that’s the next course of action, thank you.

Hi OP, just wondered how things were going? Asking as I have a DD, 3.5yrs old, in a similar position. We're flipping between 1&2 movicol a day. One doesn't seem quite enough but 2 gives the symptoms you describe.

Thanks for checking in. I’m sorry you’re in a similar boat. We’re a month on and no progress unfortunately. We’re now on 4 sachets of movicol and 8ml of senna a day.

Still 1-3 bowel movements a day with no sensation prior, all in the nappy, no dependable schedule.

I am quite confident we aren’t experiencing overflow. Even on the much bigger dose now we aren’t seeing any old poo. The first time we disimpacted we were seeing serious movement at 4 sachets per day. I have shared images of what she’s passing on the movicol mummies Facebook group too and no one seems to think it’s overflow. They think it is likely just loss of sensation in the bowels, but the senna hasn’t helped with that yet. We will continue up til 10ml a day and then try pico sulphate.

Also, if she was impacted then the high doses of senna would have likely caused discomfort- they haven’t given her any symptoms at all.

I’m loathe to contradict Movicol mummies, who are all fantastic and of course I’ve not seen the nappy pic, but four sachets a day isn’t a disimpaction dose

Yeah it's a comparatively low dose. We went up to 12 sachets for disimpaction. (Don't do that without discussing it with your doctor my kids were older when we were doing that).

The only way to figure out if someone is impacted is an xray. Even with an ACE stoma at times one of my kids would get impacted. At one stage we were doing Xrays regularly to monitor what was happening.

My DS (6yo) has been on movicol for years. He has half a sachet a day.

And probably has a big poo every 2/3 days. If I remove the half sachet, he struggles to go once a week. If I up the sachet to a full one a day, he gets a bad tummy and runny poo.

So, we stick with our half sachet 🤷🏻‍♀️

Sorry OP, it’s a stress isn’t it :(

Just coming on to add NiCE guidelines are to refer to specialist if not sorted after 3 months.

We were referred to the community paediatrician service but that meant we got to see the continence nurse. She was absolutely amazing and sorted ds out.

He is now on a v small dose of sodium picosulfate only.

GP was utterly hopeless. Saw a private consultant - read me the NICE guidelines (worth the £250 -not ) but told me about the continence nurse service.

ERIC are great but not enough for something like this - you need actual treatment by someone who knows what they're doing.

I think you might just need to be the squeaky wheel op. Good luck xxx