My 8 year old son is still soiling himself daily and has done all his life since being constipated for a considerable period as a baby.
We’ve done everything we have been advised to do by consultants and doctors, and we are just pursuing a diagnosis of ADD (which I’m convinced is linked to his bowel issues). He’s on Movicol, we’ve done disimpaction regimes, regular toiletting, I know all the advice about toilet sitting etc. Nothing is working, and as each year goes by I think to myself , right , this is the year we’re going to get this sorted, and it’s not happening.
I’m feeling so down about it at the moment, and don’t know what to do next. I was just wondering if there were any success stories I could perhaps hear about to give me a bit of a boost. I just want to know if/when will this end ? Will it continue into secondary school? I need to prepare myself for what’s to come.
Thanks !
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Roxyrox
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Hi there, my daughter has been like this since she was 31/2 and she is now nearly 12. we have tried everything as you describe plus senokot. Over this last year she has been using peristeen,a colonic irrigation system . This has worked well and she doesnt have accidents at school anymore,still some at home. I had hoped that this wolud be a complete cure but it hasnt been so far, maybe eventually. This was sorted out by the paediatric nurse at the hospital,someone comes out to show you how to use the system,might be worth asking.
Good morning. No not at all,she"d rather not do it but its fine, a lovely specialist nurse comes out and shows you what to do. You fill up a plastic container with warm water and attach a long tube to that and another lubricated ,soft catheter to another tube. Both tubes are attatched to a central control/dial. You insert the catheter ,gently pump in some water, sit on the toilet having removed catheter,water and pooh comes out. She sits on the loo for about 20 minutes. Sounds complicated but it really isnt.Good luck xx
well you start off everyday for i think it was two weeks and then alternate days for two weeks,the nurse that came out said that would be it but for us it wasnt. If she goes normally then we dont do peristeen but if she doesnt we do. For us she still does peristeen most days.
In my experience my sons disimpactions were not successful until his soiling stopped completely. My sons maintenance dose is currently 12 sachets of movicol a day, 3senna tablets, 1 bisocodyl tablet and he us irrigating with 600mls of water every day as well using the qufora balloon irrigation system. The issue we had after disimpaction was that the maintenance dose was too low so he would just get blocked up again.
My son is hardly soiling at all now but it’s taken 4 years to crack it and countless hospital admissions and doctors.
My sons irrigation system was prescribed by a paediatric surgeon.
It’s really important to get to see the right doctor. I resorted to writing to them myself after doing my own research and that did the trick!
Thank you so much for sharing your advice. I feel like I’m at my wits end, so I’m going to try and get in touch with the doctors at the hospital to step things up as I feel like we are getting no where. X
My so turned 9 on Feb 13 2021. He is the same as your son. Soiled from more or less all his small life. I am also looking for a positive story. His Peadiatrician Dr Cameron just keeps giving us Movicol. Nothing helps I have tried all the advise. He is now getting bullied at school. We don't even have a continence nurse etc due to hold ups caused by covid! I am fed up throwing clothes out and underwear and he is just down about it all. I don't know next step.
I really feel for you and know what you are going through. This is so stressful for all of the family. I had a tough day yesterday beating myself up thinking maybe I haven’t tried everything, maybe I could have done more when he was younger, maybe I should’ve been more pushy with doctors etc. I also get fed up, angry and embarrassed that my son has this awful problem. I’ve got cross with him countless times and I’ve really hit rock bottom with the guilt, as I know it’s not his fault. We are a family of four with a busy life of work, like most, and dealing with this on top of everything else is hard. At the moment he seems happy to carry on with life as normal, school, clubs, friends etc., but he refers to this as his “secret”, and I’m worrying that it’s only a matter of time before his anxieties get the better of him and he starts to be more withdrawn. I don’t want him to feel the weight of my worries too, so I know I’ve got to change the way I look at this and do everything I can to make him feel comfortable and at ease until the time comes when he’s cured. I feel that the doctors need to do more for him and I’m going to write to the paediatrician at the hospital in a plea for more help. At the moment, he has access to a disabled toilet at school with all of his spare things, which has helped him feel more safe at school, as he has a place to go where he can clean himself up etc. He’s so paranoid about his friends finding out that I have to buy him the exact same trousers so that no one will notice he’s got changed. He also has a toilet card so that he doesn’t have to wait to ask his teacher. I’m going to speak to the Head and School Nurse too, as I haven’t really got anyone else involved other than his teachers, who are great, but my son refuses to talk to any adults at school about it so we’ve just carried on like this. I think it would be helpful for him to have a go to person at school that he feels he can talk to. I really feel being more open about it will help.
We are also doing more to make sure that he drinks a litre of water a day in addition to his medicine , and we are in the middle of a disimpaction, as we haven’t done one for some time. I now accept that this is not going to be cured in several weeks and that we could be in this for the long haul, but I’m going to make it my absolute priority in life to do everything I can to help and support him.
Sorry for the long message, and that this isn’t a story of success.... YET, but I’m very determined that it will be given time ! Don’t give up you are doing a great job !!! Xxxx
I have just read all these comments and am in tears, my 9yo is irrigated daily and been on movicol for 4 years now and sodium picosulphate. He was on tablets too but national shortage so changed to sterculia granules and they're now having production problems. So just movicol irrigation and sodium picosulphate. I think he's now back to being impacted and overflow issues, it's not got any better and if anything as he's getting older feels worse. I feel upset that he's having accidents, it's the "feeling" he doesn't get... Its awful and Reading some of this is painful that there's other children in a very similar situation. Sorry for the long one x
I wish there was a way that my son could talk to your sons and daughters, as I think it would make him feel so much better knowing that he’s not the only one going through this. I’ve shown him some of the videos on here with other children but it’s not the same. Has your son told any of his friends about it ? I’ve heard that it might help to share with a close friend , but how do they bring it up in the conversation... like btw I poo my pants...its such an debilitating problem I really feel for them xxx
My sons refuses to talk about it, only to his close family and sometimes he doesn't like doing that. I've just found this sitr with these posts, what videos do you mean? He was in hospital in October for 4 days as was impacted badly and he was so adamant his school friends didn't know why... So hard for them all x
HiIt’s just so awful for them, and the older they get, the more I worry it will affect their confidence. I am really scared about my son starting secondary school like this, although he’s in year 3 so we have a few more years. The videos are under “stories”. There’s one about a boy called Sam and there are also some real videos of older children speaking about their difficulties at secondary school.
Another big problem we have is that when Declan has an accident, he doesn’t tell us (especially if he’s playing on the Xbox or something he’s engrossed in), he’ll just sit there....then it ends up going everywhere all over his clothes, bedding and the carpet etc. and it’s a massive clean up. We do get frustrated with him about this, as he seems to make no effort sometimes to actually get to the toilet/call us for help. He just sits in the mess until we discover somethings happened. I’m wondering if anyone else’s child does this and why? I say to him that I know he can’t help the accident but he must know that he’s had a accident and why is he not doing something about it...even if it’s just getting up and going to the toilet or asking me or dad to help.
Oh it's interesting to read your son just doesn't tell you either as mind just does it too, especially on the xbox, I make him sit on the loo like thdybtell you to after each meal but he still can have accident and sit in it until I go in to his room, I say the same surely you must feel that and smell it, he just says sorry!!I can't see where stories are.
Hi we have this exact same thing but could be playing watching telly or any thing ,when you ask her if need s toilet says no and i ask if she s clean she say yes sometimes or can tell by he tone of her voice!! when i check and she say oh did nt know i must of pumped, we ve been having problems for a few years now but been up and down but i just wish we could get it sorted before she goes to secondary school she just in year 3 now i so worry for her ,i think with reading a lot of these stories i need to push more at the doctors !!
Hi,I dont have sucsses story either im afraid but live in hope. My son is 12 and he has gone through this since 3 y o. But to add to this he is also holding it in ,he is on the sofa next to me atm and he has not been for about a month now . This is first time iv written about this and its just so awful to live with i dont know what else to say. I don't have any medics that helps ,so iv made an appointment with my doctor to beg her for help .
Yes you need to ring Dr. That's awful, you poor thing and your son. I had to mention to my Dr faecal impaction and overflow before they actually started listening, all the lactulose in the world wasn't helping!!!
Oh my goodness that must be so stressful for you all. Has he ever had any medication/movicol? You are not alone with this and there is lots of help. Try phoning the Eric helpline tomorrow and I’m sure they can advise what you should do next. I hope your son gets the help he needs x
Hi yes he is taking movicole ,I have now got him liquid dulcolax but he is reluctant to take it as he is so scared of whats gone happen ,my son needs psychological help and I'm gone have to get the ball rolling with that thus afternoon when doctors phone.
Ditto! I think there's a lack of positive replies as I believe that people tend to be on here when they need help. I'm trying to live for the day and not worry about what might happen in the future, I would like to prepare like you but it's so stressful. Better just to get through each day knowing I have done my best. Lots of deep breaths, hugs and washing!
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