Still soiling...Do we need to disimpact again?

[SarahKate85]

I am so confused... Disimpacted my 4 (now just turned 5) year old son last month - he was on maximum dose for 9 days but we never fully reached "rusty water" stage, just gravy type 7 poos. At this point we were told to stop by the GP, so we've been reducing down to find a maintenance dose. Got down to 2 sachets a day at which point soiling started again. I've increased back up to 4 sachets and the soiling has continued, I'm not sure if this is due to things still settling down/bowel still recovering (I suspect he was constipated for years before I realised), or if we stopped too soon and should give disimpaction a second go until we are unquestionably at the rusty water stage! It feels like now could be a good time to give it another go with the Easter break, I'm just reluctant to put as both through it again so soon But also don't want to go back to daily soiling at school, he's also having wetting accidents too. So lost and depressed with it all He is still pooing a LOT every day which I don't know if is a good sign or not!

[Yaleamanda]

Absolutely disimpact again, remain on the maximum dose until you reach watery stools with no lumps consistently for a few days before you start reducing the doses down extremely slowly ie one dose every few days until you reach a suitable maintenance dose to remain on.

[SarahKate85 in reply to Yaleamanda]

Thank you! I sort of knew we were stopping too soon but was so worn down I didn't have the energy to argue with GP! Will brace myself and try again!

[Vnix89]

We had this same problem, have you been prescribed senokat? The movicol loosens but doesn't stimulate. We were stooling daily, 2 days on senokat and we have had 2 accidents in 4 weeks

[SarahKate85 in reply to Vnix89]

I bought senna and picosulfate OTC but haven't had much joy with the senna (maybe not giving him a high enough dose?) Going to try the pico this time and see if that makes a difference. I just had sooooo many hopes pinned on disimpaction improving the soiling (which has been going on for years), really hope take 2 works 🤞🤞

[H1234K]

Hi Sarah, sending huge sympathy, we are in the same position a year down the line with our nearly 5 year old. We continued the full 8 sachets for 2 weeks (second attempt) and never reached the gravy consistency. The ERIC helpline specialist told me to stop- she said if they have a good appetite you might never reach the water stage. We have had to disimpact a couple of further times since the first go, over a period of a year or so, the indicator that we need to redo it being- new soiling and new wetting again. Usually there is no other hint that things are building back up, and we are on 4 sachets per day plus picosulphate, but I think that it’s incomplete emptying each time that allows it to slowly build back up. Even despite bowel training exercises with balloons etc.

Going down to 2 so quickly might be the downfall, as it’s a pretty low dose, but you probably need to do it again unfortunately. My boy found it way easier to tolerate the next time- I just go straight to 8 now.

[SarahKate85 in reply to H1234K]

Thank you your situation does sound similar! Decided to go for it again and put him up to 8 sachets yesterday which he managed really well, wore pants all day and we went out and about no accidents! His control/awareness seems to improve with the higher dose so I think after this disimpaction we will need to keep things fairly liquid with a higher maintenance dose for a good while. Do you give pico daily? What dose? I'm trying 2.5ml every night at the moment and seeing how that goes, good morning poo soo far... Going to try upping to 10 sachets today as he's 5 now.

Also really useful to know what ERIC said, i posted here as the Facebook group I'm on are obsessed with getting 3 days "rusty tea" so I know that's the only answer I'll get there! I'm not sure we would have ever reached that...

[H1234K in reply to SarahKate85]

Yes we give picosulphate 7.5ml at night. Not sure how much difference it makes to be honest, but we did try to decrease and thought things were worse to went back up again. We’ve never had ‘rusty tea’ ever! You can go up to 12 sachets at age 5, it feels like a lot of liquid to consume. Poor things.

My advice would be be patient with it, the disimpaction isn’t likely to be the end of your journey, just the start…..

[Beccaell]

Hi - we have a 5 yr old daughter and it took us 10 days to reach the rusty water stage. We were advised by Eric to put her on the max dose of 12, rather than the smaller max dose for younger children. Just wondering if that might make a difference for you? The lady at Eric also advised not to reduce doses slowly after disimpaction has been reached. She said go straight to 4 doses per day and maintain that for at least 2 weeks to give the colon a chance to settle down. The Eric podcast also advises same. Good luck - I know it’s so stressful.

[Tatty74]

It's so hard to get the right balance I find Sarah. My son is 7 going on 8 and exactly the same as your little boy. He soils everyday unless he's really had a good clear out. He's suffered from Chronic Constipation since he was a toddler. I work ot with a combination of softners and laxative (senna) but we've just been away for a few days and now need to get back on the medicine before school starts 😫 I'm at my wits end too and believe he now has encopresis which is a psychological from the constipation. I plan to re-refer back to child psychologist for help as he is an extremely selective eater. I've realised as parents - WE have to work to fond the solution as GPs and pediatricians will and can only prove guidance and a certain level of support.

Are the school supportive?