Has anyone’s DC been on Movicol long-term?

[SomeCatsLikeCheese]

Firstly, I promise I am not the poo troll, I’ve been on here for years.

I’m looking for some advice about Movicol, pending being able to get hold of our GP on Tuesday. DC1 is 5 and has been prescribed it by the hospital following referral for toileting issues (repeated soiling). We followed a disimpaction regime for constipation a few weeks ago and he then moved onto a maintenance dose of Movicol. We were advised to start with one a day and then play around with it if needed.

He has done amazingly well with no accidents for over a fortnight - and then we’ve had a run of daily accidents, often but not always as a precursor to a bowel movement. I’m wondering whether we should reduce the Movicol - or whether it could indicate that the constipation problem is recurring and we should increase it.

I will obviously seek medical advice on this as soon as I can but am wondering if anyone else has been in the same boat and how you worked out what the right dose was?

@SomeCatsLikeCheese I’m sorry you didn’t get any responses. My son had this and IMO the dose of movical needs to be increased. hope you get sorted ok.

My DD is 2 and a half. She has always struggled with constipation but when we started potty training about 6 months ago she started refusing to poo and caused herself so much pain. She has been on a maintenance dose of movicol for the last 3 months to help her to go without being scared of it.

Our gp told us we could increase or decrease the dose depending on how DD was managing each day. She roughly needs half to a full dose every day - although on rare occasions she can need 2x full dose.
It really is trial and error to get them into the right routine for them so it might be worth increasing the dose for a short time to see if it helps.

Hi OP! My experience with movical for my son has been tested many times. He was on it from the age of 6 until 10 years old. You say he has been to the hospital. Did they do a scan of his bowels? Did you increase each day for 10 days the amount he takes? It can get very messy at times when the number of sachets is high 😔 in the end for my son I had to fight for a different script for him due to the soiling becoming so bad and me feeling movicol was getting us nowhere and we ended up with biscadoyl. Glad to say he is a happy 12 year old now and only on a managing dose of one biscadoyl tablet a week. Definitely seek your doctor's opinion and ask for advice. Not a pleasant thing for your little one to have to be going through or yourself as a parent.

Dd had movicol for about 4 years and at times it was combined with another laxative. She doesn't need it anymore and is a healthy 7 year old with no toilet problems or hangups.

Thank you so much for your replies!

@Tequilamakesmehappy, they did an X-ray which showed the constipation - nobody realised before that as he was going most days and no doctor could feel anything in his tummy. We followed paediatrician instructions for the disimpaction, over four days, increasing up to ten Movicol plus some senna. It was messy!

We were told to tinker with the maintenance dose until we were getting at least one soft poo per day. But this week we’ve had two most days (some of which have been loose) but with soiling as a precursor. Then yesterday’s was super loose (sorry for tmi), which made me wonder if we were giving him too much. But the soiling made me wonder if we weren’t giving enough.

It is great to hear other people have come out the other side of this!

My child is nine and has been on it for five years. We have now reached a point with a low maintenance dose but I fear there may be occasions where another disimpaction is needed.

I think the return to accidents is a sign that a disimpaction is needed. Have you discovered the poo nurses? I found they really explained how movicol works.

www.thepoonurses.uk/

I'd suspect another impaction and would ask for an xray ASAP.

A few of the gastros we have seen had us follow up movicol with a bisacodyl tablet on the theory that if the bowel is really stretched, the movicol can soften the stoll but there's no impetus to poo. That can help with keeping him emptied out.

Oh God. Not again. Please!

Thanks for the advice and links. I’m going to try to speak to the GP tomorrow. We should have had a follow up appointment from the hospital by now as they wanted to see us again within four to six weeks so I probably need to chase that as well.

It has been really difficult with the Movicol because of him being in school so we’ve had to time it for when he gets back (and three days that’s from wraparound care). He doesn’t drink enough either, and at home we can nag him to get liquid intake up, but at school he doesn’t drink enough at all and there’s only so much you can get him to drink in a narrow window before bedtime...

Hello OP, I feel your pain.

Can I recommend a Facebook group called Movicol Mummies? It’s a very supportive and knowledgeable community of people all going through the same thing. It’s saved my sanity on more than one occasion.

Am I understanding correctly that his disimpaction was four days long? That’s not long at all and I wouldn’t be surprised if he was still disimpacted. The rule of thumb is that you should be looking to get to ‘rusty water’ - poo that is basically liquid.

Getting enough water into him is key and it’s so hard with school. My DD’s teacher reminds her and she still comes home with a near-full water bottle. I’m about to contact her to ask them to get more strict with her - eg you can go outside to play when you’ve drunk a quarter of your bottle.

Do you do regular toilet sits? He needs to sit on the loo half an hour after each meal. That’s when the gut is at its most active and is likely to do a poo.

I wish you lots of luck. My first step would be to disimapct again. Sorry. Maybe over May half term?

DS has been on Movicol roughly ten years. Sometimes the dose needs to be increased either temporarily or permanently (often during periods of growth, holidays when the diet varies or if he is moving/upright less). We haven't found decreasing it to be a good idea. Weve occasionally needed laxatives.

TMI alert. Is the stool actually loose or are you getting the liquidy stuff that is the only bits that can get round a stuck poo? Are you getting other signs: lack of hunger, nausea , stomach pain?

We were told You can make up the Movicol and keep it in the fride for 12 hours. If you make it up can school keep it in the fridge and give it at lunch?

DS started this two years ago now. He is 5yo. The HV suggested that we use Laxido to help him with constipation and so that he gets the urge to poo. It worked. No more soiling. He is on a sachet once a day. It has varied though, initially 2 sachets, then down to 1 and a half, then back to 1 etc. He was referred to paediatric continence service and the nurse did six monthly telephone appointments. We also filled out a fluid diary for a week.

Continence nurse has suggested he stay on it long term and it's such a mild laxative it's not going to have any adverse effects on him.

Good luck, hope your DS feels less constipated and gets a dose that's right just for him. It can take time 🤞

I am up 6am every morning so make up DS's cup of Laxido and pop it in the fridge ready for him to drink at any point that day. Usually he has it with fresh orange or diluting juice.

This is a very helpful thread. My 5yo is on 1 sachet a day too. We have just figured evening is better than morning, and currently accidents are confined to home due to timings.

Still many accidents though...
He has been on it since November.

Thank you again.
@Rainallnight, I also expected it to take longer but to be fair, what was coming out by day 4 was green liquid. So I assumed the paediatrician had advised correctly (as you would!) based on what she’d seen on the X-ray.

@Hazelnutlatteplease, the stool itself looked soft when I helped wipe yesterday. Soft but solid, if that makes sense. DH has helped with more than me and one did sound like an explosion which would fit the idea of stool coming round a blockage. But yesterday’s was soft and definitely stool.

Sorry, what a lovely conversation over breakfast!

He hasn’t complained about tummy ache at all (whereas previously prior to disimpaction he did). No change to appetite or diet, no complaining about nausea. He says when the accidents happen, he thinks it’s wind but then realises it was a bit more than that.

Oh and I’m loath to give Movicol at school because even if school were willing to administer it, I’m worried about him having a more substantial accident there. So we are essentially trying to train him to go later in the day to make sure it happens at home.

I should explain that toileting has become a Thing for DC1 and he’s very worried about being in trouble for accidents so refuses to tell anyone if he’s had one. He has come home from school with a full bowel movement in his pants before now. School are willing to help but generally don’t follow through - I’ve asked them to remind him at break and lunch to try for the toilet and also to ask directly whether he needs a change (he has clothes and wipes at school) but this is very patchy as to whether it happens. It’s really difficult.

It sounds like you’re worried that Movicol acts very quickly and would cause him to do a big poo? It’s really fairly slow acting - all it does is carry water to the bowel to make the poo softer. It doesn’t cause a poo, IYSWIM?

I don’t know if you can train him to go later in the day but certainly regular toilet sits would help him let it out at convenient times.

Oh lord yes. It's been a saga! DS is 5. He was on it for about 18 months on and off but we never managed to get any real help with how much he should be having. GP similarly told us to tinker with the dose and figure it out ourselves.

Finally had an appointment with the bowel and bladder nurse just before Christmas and she said she couldn't feel anything in his tummy and that things might just be getting better by themselves.

The trouble was that even with the smallest dose of half a sachet a day he was doing up to 6 poos a day and wasn't in any control of it. Since Xmas he hasn't had a dose at all. He only goes about every 3 days but when he does it is independently, a large but soft poo without any difficulty and we don't have accidents any more.