Disimpaction question

[Starryeyes2000]

Hi there, my daughter is 9 and we are currently following the disimpaction regime. We are currently on day 3 at 12 sachets. Her poo is very liquidy, however, there is still the odd sweetcorn piece in there. She last ate sweetcorn 9 days ago. How much longer should I keep her on 12 sachets do you think?

[Robinia]

Until you get to rusty brown water, then gradually reduce sachet quantity slowly to find the right maintenance dose. Easy to stop disimpaction too quick!

[mabelrose4 in reply to Robinia]

Hi Robinia ,

I would love your advice .

I am on day 7 of 12 sachets with my 10 year old. We had brown water on her second day of 12 sachets but then it went back to Poo soup . She then had a watery Poo yesterday but now is back to a liquid chocolate mousse shooting out . I am worried as to how many days to continue

On 12 sachets .:: are we still not there yet . She has been constipated fir many years and has never been dry at night which is why I’m really trying to crack it this time .

Any advice would be greatly received as I k is that you have now come out the other side .

Many Thanks

[Robinia in reply to mabelrose4]

Ok full disclosure...my son is on a maintenance dose of 12 sachets a day!! Alongside 3 Senna tablets and 1 bisocodyl tablet. I realise this may sound excessive but he actually stopped soiling last week and it feels totally miraculous. I will reduce it in time but he’s keen to stay in 12 sachets at the moment. He drinks it all after school.

I can only speak from my experience obvs and I’m not medically trained but based on my experience I would say keep going on 12 for longer until you are really sure she’s clear and then reduce very very gradually.

My son is now pooing on the toilet 4/5 times a day, going without prompting sometimes, and his pants are clean- it’s been a very rocky road with loads of set backs along the way but so worth it now we are finally here (with high school due to start in sept)

[Starryeyes2000 in reply to Robinia]

Ah so you have stayed on a high dose for a while then. My daughter goes back to school next week but right now has very little control over her bowels at 12 sachets a day. Does it get easier? Do they gain some control at that dose? We flit between sludge looking poo and cow pat squishy ones so far. I’d hate for her to go to school and have an accident.

[Robinia in reply to Starryeyes2000]

It’s deffo taken a while for him to have any control. I think the stimulant alongside helps. He’s in a good toileting routine trying regularly throughout the day and the good thing is the poo comes out really quickly and easily now. He was in thick pads and having accidents at school sometimes (he can clean himself up and takes bag of spares to school) and also soiling constantly - been incontinent for nearly 3 years so being continent is a massive step forward.

Pads in the pants help and encouraging them to clean themselves up.

I guess you can assess how you think she’s doing just before she goes back.

I think the fact my son drinks all the movicol after school helps as it lessens the volume of soiling/poo coming out during the day.

He now poos after breakfast, mid morning if he’s at home, after lunch, after school and before bed. I’m assuming the frequency will diminish once the movicol has reduced but compared with 24/7 soiling this is a huge improvement!

In a strange way covid has helped him because he had a block of time at home when we managed to get much of the disimpaction done

[mabelrose4 in reply to Robinia]

Thank you so much for replying and sharing your information.. it is really helpful.

My daughter has never soiled or had a daytime accident . She was doing 3-4 massive poos a day without movicol . My motivation for clearing her out is that she was getting anal fissures . I’ve seen GP’s over the years for constipation and had a few hospital visits . We saw Gastro doc for constant tummy pains six months ago and she was diagnosed with IBS and I think we are now managing this condition with diet .

She was dry at night during the first week of disimpaction but has gone back to wetting the last two nights ... so I’m trying to work out if more Poo is stuck and slowly dislodging .

I agree that this Covid home schooling has allowed us to at least try this and I don’t want to give up.

I am so pleased that you have found a way of managing this now Robinia and it sounds like the long term high sachets of movicol are not harmful .

Do you buy the adult version and use half ? I am on the movicol paediatric and am calling the gp to get more today , but she may not re prescribe if she doesn’t agree with me following this strong regime . .. and you can’t buy that strength in the chemists .

Starry eyes ... we both seem at similar stages. I read that it can take between 7-14 days . We are on day 7 of 12 .sachets so I am going to keep going as my daughter is not back at school .

Robinia .. thanks again for your guidance based on your mass of experience .

[Robinia in reply to mabelrose4]

We use the paediatric plain (cosmocol). The GP said he will be able to prescribe the adult one once he’s 12. I think it depends very much on the health professional as to whether they will agree the high dosing. Some GPs are more relaxed about it than others. My son has it on repeat prescription so that makes it easier.

There is definitely guidance available that says disimpaction is reached once you get to rusty brown water stage. I know now when we have done disimpactions previously they haven’t been complete enough (incld in hospital) and then the maintenance dose he’s been on after has been too low so he hasn’t been able to relax his sphincter muscles enough on the toilet.

We’ve also done lots of work (me and him) around what he does on the toilet- helping him relax the right muscles and blowing (on a harmonica has worked well) to help push the poo out.

I really think the stimulant has helped him as well.

We can all only speak from our personal experiences on here!

The other thing is I think if it’s constipation it can take multiple disimpactions to get on top of it. So if this one doesn’t get on top of it fully it’s worth trying again in 6-12 weeks.

I read someone who posted on here saying they do them in school hols- that’s what we did- one at Feb half term and then a really big one Easter.

[mabelrose4 in reply to Robinia]

Ahh ok .. that is really helpful . I will speak to the Gp today and see if she thinks we need a stimulant too or whether we should just carry on . If she doesn’t agree with us then I will be a bit stuck as you can’t get paediatric plain over the counter.

Many Thanks

[Robinia in reply to mabelrose4]

GP will still need to prescribe more movicol for the maintenance dose anyway so maybe ask if they can put it on repeat, good luck!

[mabelrose4 in reply to Robinia]

Thanks Robinia,

I also had a very good conversation with one of the ERIC helpline assistants who like you said that disimpaction is not complete until 3 days of watery Poo and that it can take a month or more if a ten year old has never been dis impacted before . She also recommended holiday disimpaction a as she said it can build back up quickly anc if the second disimpaction happens quickly then you have proof that back up isn’t happening . She also said that the bowel takes up to a year to regain tone and that the bladder needs time to readjust .

I thought I would add that info for anyone else and starry eyes .

Take care

[Starryeyes2000 in reply to mabelrose4]

Oh thank you, that’s hugely helpful. We’ll keep going on a high dose for some time then and hopefully she’ll be able to cope with school. It’s just unfortunate that she goes back next week 😱

[mabelrose4 in reply to Starryeyes2000]

You are welcome . She also mentioned that because we are on day 7 of 12 I should ask the doctor for one Senna ( stimulant) per night prescription to move it along quicker .

My daughter is also now going to school next week but just for a few hours in the aft .. so I am hoping to work the movicol round her day and keep the teachers up to speed .

I’ll keep you posted

[Robinia in reply to mabelrose4]

That’s funny because I was going to suggest you speaking to one of the Eric advisers if possible. What a great thing we all have this forum for sharing information- it’s helped my sanity no end ☺️

One thing I noticed today was that my son was very unsettled when I collected him (like he used to be all the time when constipated) and then, after sitting on the loo and doing a lot of poo once he got home, he explained that he had wanted to go at school but because of the bubble rules only one child is allowed to go to the toilet at a time so he had to wait and by the time he could go he didn’t feel he could any more (and then he had stomach ache).

He also can’t use the disabled loo like he used to because he has to stay in his bubble.

Just wanted to share that for any returning to school soon.

[mabelrose4 in reply to Robinia]

Sorry to hear he didn’t have a good day... Surely the school have another toilet that he could maybe use ? . I noticed once when we were on a walk my daughter had to hold it in and then had Terrible tummy ache.

I’ve just spoken to my GP and he has prescribed sennakot .. just worried it may give her bad tummy cramps ? She has just had some watery Poo so maybe we are getting there ... but going to stick for three full days .

Thank you for the Pre warning re school ... I will make sure that the school have some arrangements in place re the toilet facilities .

[Robinia in reply to mabelrose4]

I have found Senna (same as sennakot) fine for my son, it was picasulphate he couldn’t cope with.

I have also found all the meds hurt more when he’s full of poo. Now he’s clear he copes so much better with the meds- actually wants to take them now!

Pls let us know how you get on xx

[mabelrose4 in reply to Robinia]

Good to know . I’m going to give it a go tonight !

Thank you x

[Starryeyes2000 in reply to mabelrose4]

Good luck to you both. My daughter has also started having to use catheters in the last three months or so. The support you all offer on this crazy journey is invaluable xxx

[Iwouldwalk500miles in reply to mabelrose4]

Hi there MabelRose, We are at exactly this stage - it went watery and I thought I’d cracked it and then back to poo soup next day. Just wondering what happened next - did you keep going and get to the fabled ‘rusty tea’ stage? Thanks!