Son withholding bowel movement

[northernmamax]

Quite longwinded but was wondering if anyone had experienced the same and have any tips to help.

5 yo son pathway for ASD.

Suddenly two months ago started withholding his poo. Putting it down to sensory issues.

He is still in nappies as not tolerated toilet training.

He physically will not let his poo come out and holds it in so much he is now suffering with constipation.

Dr prescribed movicol which he will not take (our doctor is useless) DS will NOT drink anything other than water and can taste it in his water, even in small doses. I've tried it in yogurt and all kinds. He just knows (SN parents will understand).

Pharmacist recommended glycerin suppository which he will not let us put in and has triggered crisis.

Rang drs said nothing else they can do and to try get the movicol into him (stupid, I have tried everything) and last port of call is hospital for a manual evacuation. Yes, I could take him for a manual evac but this does not solve the problem long term.

Has anyone had this problem and can give any suggestions. I have asked for a referral to continence team but this will probably take time and as he doesn't have an official diagnosis yet it seems like no one wants to help me!

This is day 13 of no poo and smearing on nappies. I'm so helpless and he is so scared of letting anyone go near his bottom now that I feel totally hopeless and know whatever happens next is gonna massively traumatise him if we don't get this fixed quickly :(

Bumping this as really desp to hear any similar experiences

Have you tried syringing movicol into DS?

My dd withholds poo she's on daily movicol to keep her going the movicol really is great my dd went 17 days and was in a lot of pain and after 3 days of movicol finally pooped it's now so soft that she can't hold it and she's much happier. Try and find a fruit juice or cordial he likes try every drink you can think of and I'm sure u will find one he accepts the movicol my daughter has is tasteless and she will only have it in vimto cordial which took a lot of drinks to discover but that seems to hide the taste completely my dd is on a limited diet and only drinks apple juice so it takes some time to find the drink that worked you could also try putting it in a juice cup so he can't see what's inside hope he's ok and you aswell I have seen myself cry over this before we got the daily movicol into her she's much healthier and not in any pain good luck 🤞 all the best

So sorry I have no real advice but we’ve been going through this for a year now almost! ☹️ It got real bad last May time when he got to a whopping 18 days of holding it in. We tried all meds and the one that works is called Sodium Picosulphate. It tastes just like Calpol.

He’s nearly 5 and is still doing it, for the life of us we cannot get him to stop withholding. He now only gets to about 6/7 days has 5ml
of the medicine and the following day will do a whopper of a poo and on the toilet too.

I’m hoping and praying it’s just a phase he grows out of, we do everything right. Even had a brilliant week where we sat him on the toilet every day and stayed there with him until he did one. It would take around 40-60 minutes but he did it. Thought we were finally getting somewhere until he just stopped again and the time we were sitting there was getting longer and longer, until eventually we just gave up as it was obvious he wasn’t going to do one.

He gets himself in to a right state when he passes a certain amount of days. Doesn’t eat much, finds it uncomfortable to sit down, tip toe walks and almost waddles. It’s like his autism becomes very obvious. It also massively is affecting his days at school too. I just don’t know what to do honestly 😩 So I’m sorry this is no real help but hopefully it gives you solidarity that you’re definitely not alone.

I know all about the smearing too, it drives me mad. We change about 6 nappies a day because of tiny stains and my house STINKS because of it! That doesn’t bother me half as much as seeing him in distress though, just wish he had better understanding but I’m hoping one day he does and this is all a distant memory.

PP - did you get the sodium picosulphate prescribed or can you get this OTC?

My doctor just basically said nothing else they could do but I had seen this when I was doing some research about the whole thing.

We're totally in the same situation word for word!! It's awful the poor thing and just can't imagine ever being able to toilet train him now :(

@northernmamax Yes the doctor gave it us on prescription. I think we took him once it had been 8 days and they prescribed us laxido, it did nothing. They told us to come back if it got to 12 days. Went back and they prescribed something else.. could have been Lactulose maybe? Also did nothing. They told us to go back at 16 days I think which is when they gave us the Sodium Picosulphate and it worked immediately the day after we first gave it him. I was sceptical at first as the doctor wanted us to give him 10ml and that’s pretty much an adults dose, so we only gave him 5ml the next day and on day 18 I think he did about 7 poos, quite literally.

I know how hard it is, it consumes your life and ruins the family, as harsh as that is to say. I’ve had many meltdowns and been in so many floods of tears begging him to just poo. Like I said we’ve been at this almost a year now, I have no idea how to fix it or help him. It’s all down to him, only he can really allow himself to poo and get over it.

With my son I try to see it as a positive. He went years and years of being totally in his own little world where he ignored every sensation, every person, every change possible and then suddenly he did start to come out of it and started interacting with us more, started school, and started involving us more in his play. I think with this he started to pick up on the sensation of needing to poo and like you said in your original post it’s almost like a sensory issue. Because he has a lack of understanding he doesn’t understand what the sensation is and it’s probably a terrifying feeling imagining you’re ‘losing’ something from inside your body via your backside so to speak.