Very frustrated mum.

[Misty10]

Still frustrated my daughter now age 6 years is still struggling with chronic constipation she now on movlicoil and sodium pic everyday sometimes we go up to 6 a day sometimes we stay on 2 a day but the soiling never stops .Her tummy is normal just she has trained her brain not to poo so 1 how do we stop the soiling everyday all day she in pull ups as toileting is a nightmare. 2 The doctor said she be like this for another 6 years where do I get her pull ups from as she has no feelings to urge to poo .I just feel she be in pull ups for life as she nevers poo on toilet.

[Laurasax]

Hi misty

My 4 year old son is the same, we’re on day 7 with no movement and he has 1 laxido a day.. we experience smears in his pull up and with holding. Yet when he goes there soft. This has been on going since he was very young. It consumes us as a family and can feel so daunting. I just keep gliding hope he outgrows it.

[Misty10 in reply to Laurasax]

That's what we're like but until that child tell their brain there is nothing we can do .just be patience they say .x

[Bambie83]

Oh I feel your pain - I also have a 6 year old who withholds and it’s an ongoing nightmare.

Do you see any difference with her on the level of sachets a day? I found with mine that actually once the blockage had been confirmed from the doctor had gone from her tummy, she actually found the lower dose easier to begin to feel. I mean mainly she’s still having to do routine sits but she’s now occasionally even going by herself and saying she’s feeling it. And the soiling has definitely gone down to a minimum.

Sorry can’t advise on larger pull ups but I can say you’re not alone!

[Misty10 in reply to Bambie83]

We're down to 2 sachets and 2.5mls sodium pic but from tonight she going up to 6 see if it shift as she soiling so bad even at night it's like having a baby again .she has no feeling so sitting on toilet she refuses she say she can't feel the toilet seat but she can feel her pull up or is it her brain just telling her that .I don't no her tummy normal nothing unusual so they won't scan her as we know she back up .keep going backwards can't see a way forwards ATM also she 21 pounds in weight but looks healthy it's the pooing she can't keep her weight .x

[Bambie83 in reply to Misty10]

Have you tried a full disimpaction recently? If you have enough movicol, could you try one in the Easter holidays and see if that clears her out?

My doctor said that the muscles wouldn't start to repair until at least 6 months-2 years with no constipation, but if there's still any like of blockage this just won't happen.

Also increasing the sachets but not fully disimpacting may make the whole situation worse as the poo will be sloppier and be pushing around the blockage to get out.

I've found this article explains is really well bornready.uk/blog/the-mecha...

I really feel for you, especially through the night time too.

[Misty10 in reply to Bambie83]

She been like this for 6 years been on meds for 5 years .her muscles are repaired but it's her she trained her brain not to go so withholds .we do disimpaction every weekend and holidays we have the cup of tea stage for 3 days then I reduce every 3 days I take her down slowly but that causes more harm as the more she feels it she will withhold we are just going round and round.she exercises everyday on trampoline and down our local park.never ending hence my frustration x

[Misty10 in reply to Bambie83]

Yes I read that article nothing works we have tried every method .

[Bambie83 in reply to Misty10]

Yes it does sound more like a mental block than physical one now… my 6 year old is the same it’s a constant struggle to get her on the toilet - it’s the source of so many melt downs and frustration. We’re currently doing couching for her behaviour called Ollie coaching - it gets them to see their emotions as superpowers and when to use them. There’s so much anxiety built up around the toilet so we’re hoping it will help her manage it.

Could something similar work for you?

[sairthompson]

Sounds like you need to follow a disimpaction regime. There is instructions on the website. My son struggled for years and we were also told it would take years to get better by some GPS. This is not helpful at all. I battled to get him referred to a specialist team and this was a life saver. We saw a consultant who said he was very constipated and would need disimpacting. We did this with the support of a continence nurse. It took a week to fully empty his bowel, going from 4 sachets, 6, 8, 10 and then 12 sachets daily. We then kept him on 4 sachets for a while then moved slowly to 2 sachets daily. I would ask for a referral. Good luck

[Misty10 in reply to sairthompson]

Yes we are starting after school today she can have up to 12 a day now this will be our 12 time we have done the disimpacting but surely my answer is can't I don't want my daughter on this medication all her life .but again no answer it's just so frustrating I can't just stop as she won't go .just seems like we're going round and round no changes x

[Bambie83 in reply to Misty10]

I feel for you, I've been doing this for the last few years and it's only starting to get a bit better now, keep going , you've got this! ❤️

[14crosstitch14 in reply to Misty10]

Whats her diet like, dose she drink plenty through out the day? Dose she eat enough fibre. I'v recently been buying dried fruit, banana chips are a good source of fibre, theirs lots of things to use, prune juice also, my daughter has a fidget toy and music and sits on toilet for 10 minuites 3xs a day after meals.

[Misty10 in reply to 14crosstitch14]

She has fresh fruit and veg every day cereals protein snacks 2 meals a day 2 litres of fluid .we seen a dietitian she happy with her diet .she losing weight she weights 21lbs.But looks healthy. X

[14crosstitch14 in reply to Misty10]

Have you tried prunes and apple juice piree it and put it in her food.?

[sairthompson]

My son was a similar age when he suffered. He is now in high school and goes daily on just 1 sachet a day. Hope things get easier for you, I know how much it takes over your life x

[Emily84Emily]

You need to demand to be referred to a specialist the gp doesn't know enough. You also need to ask for a constipation nurse to get in touch with you. My son is 6 he has it so bad he soils several times a day it's to the point it effects if we can go out and for how long. I want to go on holiday with him but I worry he will poo himself on the plane. Its so frustrating all he gets is bloody 4 years of daily movicol. I'm furious. Don't give up you need a specialist the gp can't do it all they are a giant tool box but master of none of them lol they know a little bit of everything and specialise in nothing. It's so frustrating I totally understand your pain. And for the kids it's so scary I mean other kids and people have started to notice my sons smell. He was at beavers last night he pooed himself and he's supposed to go camping with them next week I don't no if I should let him go what if he poos himself I won't be there to help. The medical staff don't get it. This affects their whole life and yours. I feel like I have a giant baby constantly cleaning him up I'm exhausted and depressed.

[Misty10 in reply to Emily84Emily]

Hi there we have seen them all she under gi specialist and nurses we see them every 4mths .They are saying until she tells her brain to go to toilet she withholds she on 12 sachets and sodium pic now its coming out but how long is this I want her to have a normal life we can't our daily life is at home or in the bathroom.

[Emily84Emily in reply to Misty10]

I was told his brain needs to figure it out etc which isn't fair surely as even on the box it says they can end up soiling themself. I don't believe his brain is the only issue sometimes it just comes out and I can see he can't help it. It's so bloody frustrating

[StellaA]

Can't really give any better advice on disimpaction but if you want advice on pullups feel free to message me in the chat section

[Misty10]

Chronic constipation is a condition not a illness we can't get pull ups free of charge boots do them but they are adult pads I don't want my daughter been in pads all her life but how do I stop this soiling if its only her that can stop it .if she train her brain not to poo .