Still soiling after disempaction

[Golddust99]

Hi, My son is 10 and suffers with constipation/soiling/incontinence. We've done disempaction with movicol a few times and cleared him out but it never seems to last. This latest time we got down to pure liquid poos and since then have been giving a maintenance dose of 2 sachets a day and he's been doing a nice soft poo most days. But he is still soiling most days as well. The soiling is quite soft but not diarrhoea like, it's usually a normal poo colour but today it was very dark. Do we need to do disempaction again? And why is he still soiling after clearing out, is it cos his muscles aren't strongenough? If so how long does it take before going back to normal? Is there surgery he can have to sort it out faster? He starts high school next year

[SallyandPaul]

This sounds so much like my daughters story. Everything is exactly the same except she also has 10mls of senokot as well. This helps her to have the sensation to go , which I think she lost a long time ago!! She still has accidents most days. We are going back to see the consultant at half term, who did speak about the possibility of injecting Botox into her bowel. In a way things have improved for us because she hasn't had a uti for six months, they were virtually nonstop for 9 months, they were worse than the constipation!! I know I haven't been a lot of help but just wanted to say I know how you feel as our story is so similar.Good luck

[Golddust99 in reply to SallyandPaul]

Thank you, it's nice to know we're not alone. I've just been reading up about sphincter muscle damage, from his symptoms it seems like both is external and internal muscle is damaged. We have the incontinence nurse coming to see us next week so will talk to her about it and see if they can try anything else. Good luck to you too x

[SallyandPaul]

Ps she is nine and a half

[BabygrowMama]

My son is almost 10 and we did a disimpaction back around March. We were told that it was likely to take 12 months at least to get to a point without soiling accidents. It takes a long time for the muscles to be able to get back to how they should be. We have seen an improvement but are a long way from where we hope to eventually be. And I would guess as our boys are similar age, and probably always had the issues it will be a similar time frame. We were also suggested to watch this video which was helpful, youtu.be/SgBj7Mc_4sc(Not working as expected?)

I hope things work out for you both

[ivory_47]

Just a thought - could it be that the maintenance dose of 2 sachets of Movicol is just too low? My daughter who is three has a maintenance dose of 2 sachets of Movicol and 5ml lactulose a day, anything less and she starts soiling again. Bearing in mind your son is 10 and therefore much bigger he may just need a higher maintenance dose after disimpaction? Good luck!

[Jellylorum in reply to ivory_47]

Yes I thought this too. My son is only three (nearly four) but he was on a maintenance dose of two sachets of Movicol per day, which we now realise wasn't enough for him. He was doing soft poos as well so I assumed everything was fine. However the most recent consultant we've seen explained that constipation isn't about the consistency or frequency of the poos, it's about whether the person is regularly clearing out everything that's in the bowel. In my son's case we think the Movicol was enough to keep the poos that came out soft but his bowel was so stretched that a little bit of poo was staying behind each time. It was then drying out and he gradually got impacted again. We were advised that the starting maintenance dose should be half the disimpaction dose, even if that means runny poo for a few months.

[Golddust99 in reply to Jellylorum]

thank you I'll try this!

[Golddust99]

Thanks all, I'll watch that video later and try adding lactulose to the maintenance dose. Can I ask how your kids manage it at school? My son has always refused to take any spare clothes with him cos he doesn't want anyone seeing them or seeing him take his bag to the toilet. He's only had a bad accident at school once where I had to pick him up. I worry though as when he does have an accident the amount of poo seems to be more than it used to be and obviously smells bad. He says it never happens at school, not til he gets home but I worry that it will do at some point and other kids will notice

[Louloubelle23 in reply to Golddust99]

Hi there. My daughter has a health care plan in place at school. She’s allowed to go to the toilet during lesson times no questions asked if she needs to. She’s allowed to use the disabled/staff toilet if she has an accident and also to sit on the toilet for 10 minutes after lunch. She’s also allowed to take her iPod in for timing herself on the toilet and giving her something to do while there. She has a bag of spare clothes and flushable toilet wipes which is kept in a place outside of the classroom, near the toilets so that if she needs it she can grab it without any of the other kids knowing.

There’s plenty that the school could and should do to support. These are all small things but make a huge difference to her confidence in dealing with this at school.

Have a chat with the teacher and even head/deputy if necessary.

Good luck

[fedupmum]

my son is 13 and this was him over a year ago ( he has been a sufferer since 7) , its had continued right up until august this year , 5 sachets a day and a senna at night . Since August he has had no leaks no soiling . toileting daily , So I guess my advice is keep going it seems like its not working but eventually it does for now we are enjoying a bit of normality . Good luck

[Nicky555]

My 13 yr old did disimpaction last December and on advice of continence nurse we continued until we got to “brown water” this was at 12 sachets a day then we halfed to 6 a day while using pico sulphate enema daily and slowly over many months reduced. Just got to 1 sachet daily and no accidents since we started. My advice would be talk to continence nurse and reduce slowly after disimpaction. My lad had no sensation so didn’t know when he needed to go but his nerve endings and muscles are now working.

[Narniesangel73 in reply to Nicky555]

My son will be 14 in April. This gives me hope , Thankyou for sharing 😊

[Nanoiu]

This is one of the best articles i’ve read on the topic of constipation and soiling, see if you can learn anything new from it. bornready.uk/blog/the-mecha...

[Louloubelle23 in reply to Nanoiu]

Great article, thanks for sharing

[Lancsmum]

Hi,

Please can I ask if you ever got a solution to this? I'm going through it with my son now and looking for some hope?

Hope all is well with you x