Teen encopresis. It’s a behavioural thing.

[Drybutnotcool]

I posted in SEN chat but I’d appreciate the relational wisdom of this section.

I am losing my fucking mind with encopresis teen
He’s 13. Big strapping healthy lad, he’s at mainstream school with an EHCP for sensory processing and ASD. He’s holding his own academically but socially he’s wonky.

And he stool-withholds. He says he likes how it feels. Then he gets impacted, has overflow diarrhoea and soils himself. But he doesn’t care. He saves/hides the poo pants and says he sniffs them sometimes. I find them stashed, under cupboards and behind drawers.

He saw a cognitive psychologist who recommended essentially sitting with him until he got used to just being able to sit and void on the toilet. He can do that now, but he won’t.

Added to this, apparently he doesn’t do this at my ex husband’s house. My ex has taken delight in explaining how all of this is all my fault, there’s clearly a lot of tension in my house, etc. He is a DisneyDad extraordinaire and lets the kids do what they want, for the 2 nights per month they stay with him.

I have tried everything I can think of - and god knows I’ve read anything I can lay my hands on. We saw the paediatrician who deals with encopresis, privately and he just said “well it’s behavioural. So not my department” hence seeing the psych.

He went to his Dads for 10 days and got back yesterday and I’ve just gone into his room, and been hit by the stench. He was lying in bed watching the telly, in soiled pants on soiled sheets.

I have 2 other children, also SEN, btw and this tonight has sent me over the edge. If anyone has any wisdom please share it now. I feel like I’m losing him and yet I don’t know what to do.

I said I’d take him back to his Dads but his dad won’t have him. And of course it’s all my fault, even though he came home from there already impacted.

please help.

Hi, I haven't read the full thread, but as a mother of children with bowel issues I can empathise. Have you joined the Facebook group "Help!!!! My child has Encopresis"? It's quite Amercian-centric and you do have to wade through lots of posts, but you may find some useful advice .

You could also search for posts mentioning "Daum". Sadly Dr Daum died recently but I believe his wife still runs his practice. His methodology is basically to give the equivalent of about 60ml of Senokot Syrup each day (along with stool softener if needed) to force bowel movements, then taper down. (FYI, the Amercian equivalent of Senokot is ExLax (sold as little chocolate covered squares) and Movicol is Miralax)

Dr Daum's website

Oh my word, what an absolute nightmare. I don’t get it, but I get that I don’t get it. It sounds almost like self harm. I used to see patients who self harmed (not for the self harm) and obviously there was injury. Which I was trying to physically treat, and it was not fun, and I just couldn’t get past ‘well, stop bloody doing it, then’. I know now, with a lot more stress and a bit more worldly experience under my belt, that it was sign of deep mental distress, and that somehow, via a mechanism I can’t fathom, the harm was an outlet into physical distress, which was more bearable. It was almost pointless treating the harm without addressing the mental distress and need for outlets.

I suppose usually with an undesirable sensory or control need, you try and substitute other sensory input or general control. I can imagine that no one wants even think about any sort of like-for-like sensory input, but perhaps sensory input in general could help meet other sensory needs and reduce the need to hold? I’m really just thinking out loud, here. I don’t know what that would be. Are there other sensory needs you can identify that you could up the input and see if you get any sort reduction in the holding need? I’m thinking pressure garments or weighted blankets, massage therapy or hippotherapy could possibly help to produce some of the physical pressure that seems to be sought? But it could be any other sensory need they have and find satisfying that might help reduce the really unacceptable one. (After all, you cannot control this, ever) And maybe that could help with the behavioural side - the deal is that the other sensory stuff (whatever it is) helps with the holding, and you trial it expecting to see results. Not in a reward/punishment scenario, but as a cause and effect. Presumably other sensory input (or therapy) would have a cost (time, energy or cash) associated with it, and you aren’t prepared divert resources to it without a measurable benefit. But you’ll be happy to flood him with acceptable sensory inputs if the outcome for the family is not having this less acceptable sensory-seeking behaviour. Obviously it’s not going to be an overnight magic bullet, but maybe it would help a bit.

Apologies if this is naive or basic. I know how irritating that can be. I hope you find something that works, I really do.

Absolutely sensory input.... especially messy sensory input if they're up for it.

Now, I'm really interested in this as as far as I'm aware, he hasn't had early trauma. He was the most wanted and loved firstborn to a professional middle class couple and although my marriage was crap and subsequently went pear shaped, he was about 9 or 10 when that happened and I've been flagging this up since he was three! I've also got another son who is 21 months younger and had exactly the same upbringing and has no issues. Is it always trauma related?

@TheSnootiestFox you might remember earlier on I think I mentioned it in terms of trauma in the child's inner world, which isn't necessarily the same as what we might identify as trauma originating in their external world. He'll have an individual personality and orientation to the world and people, so that goes a long way to explaining why he's different to his younger brother. But one strong possibility is how he ultimately processed the arrival and establishment-within-the-family of his younger sibling. Very possibly the meaning he gave to that affected him in ways that were noticeable behaviourally and emotionally at first, but then were masked in ways that you wouldn't have realised were strategic. If, for example, cracks in your and your husband's relationship were already appearing occasionally back then too - even subtly, as you might recall - what he picked up on from atmosphere and observing communication issues between you and your husband could have added to the meaning he gave to his brother's arrival (which of itself can produce all kinds of insecurities in some young children). Interesting that you mention it seemed to all start when he was around three, by which time his baby brother had been on the scene for a bit. Or those two factors (sibling and the marital relationship) may be red herrings, but a good child therapist would work towards identifying quite what it was that impacted on his relationship to his own poo.

There's always a context, and the context is created through transactional dynamics that we're generally not aware of. The transactional model of development is (very basically) what it sounds like: you offer something, the child offers something back based on what you're offering, and you respond by further transacting with the child based on what the child is offering you, and so on. An example of a simple transactional sequence is a baby crying to be fed, and a mother correctly interpreting the meaning of the cry and feeding the baby. The baby responds by stopping crying, which serves to reassure the mother that she has responded accurately and effectively, which in turn influences her mood (eg. regarding herself positively) which the baby picks up on and responds to with smiles. The baby and the mother are fed emotionally. Contrast that with a sequence beginning with a mother disturbing the baby by shouting within earshot, and the baby crying anxiously, which serves to increase the mother's frustraton levels so that she shouts at the baby to stop crying, which frightens the baby and stimulates louder and more anxious crying, resulting in the mother leaving the room altogether and the baby feeling abandoned to its anxiety.

Those are purely illustrative examples off the top of my head, just to show that such transactions form patterns of behaviour and communication between child and parent/parent and child which can be benign or can result in feelings of miscommunication and misunderstanding (for example). It's possible that your son somehow views his poo as something he can use in transactions with you and others, to get a need (or needs) met that he can't articulate because there has never been anyone who really understands how it all began and what it represents for him. When weaning and then toilet training phases started for him, he would have been pre-verbal and then fairly newly verbal, so communication strategies would still largely have been dominated by bodily processes for a while, where some critical things he was trying to express at times (eg. anxiety, dissatisfaction, confusion, anger) got stuck for him at a certain level which he has struggled to move beyond, despite having succeeded to greater or lesser extents at other developmental tasks. So much of his own process from those early years is now unconscious for him, and he can't articulate what he doesn't remember/understand. But an important part of the transactional theory is its emphasis on the two-way dynamic, as in highly sensitive children can have a diffciult impact on the most well-meaning parents. So complex.

It's very difficult for you all and I grasp some of the theory and even a little of the practice, but sadly I'm not qualified to claim proficiency despite a fair few years of training in adult and child counselling/psychotherapy. But if any of what I've described seems relevant and useful, I hope it helps in some small way to move you both forward.

I know you said DS was a bit wonky socially, but does he have any friends and do they know about it? How do other pupils react at school?

I don't have any experience of it and it sounds like such a hard time you're having, I'm sorry for that. I only say it because I was very worried about my son but he's much younger. He couldn't care less if he wet himself, his nursery teachers said it to me too. I used to wonder how can you make someone care about the toilet, shouldn't it come naturally. But then one day I think some other children teased him about it because he asked me why so and so called him a baby when he wet himself. I tried to explain honestly but kindly and he didn't seem upset, just thoughtful. But after that he slowly seemed to get better at not sitting in his own wee and not telling anyone or doing anything.

Could it maybe be that he hasn't yet disappointed the person/people whose opinion matters to him yet?

Also wanted to say it's really awful that ex won't try having him stay more if it doesn't happen there. How could ex not want to get to the bottom of it and help his son achieve something so fundamental for independence.

@BuntingBonanza your post is brave and beautiful.

I'm so sorry that you are going through this. Me and DH went through it for 6 years until we found something that our DS wanted more than anything (to go on an open top bus tour) which was based on his bus obsession, we told him that if he would just sit on the toilet at the same time everyday in addition to taking prescribed laxatives, we would go on the special bus. It took time even with the promise but we go there and eventually he started pooping on the loo. But even now at almost 10 he will have minor accidents in his pants and not tell us, it can be soul crushing because he knows he has had an accident. And oh goooooshhhh the fucking sitting around in his own poop deliberately 🤬

To me this seems closer to anorexia nervosa and/or hoarding, both of which I have some experience with from family members, (and both of which incidentally also cause ignorant bystanders to imagine that they can be cured by strictness, rage and the ton of bricks approach.) Both are incredibly complex disorders, where dealing with or controlling the symptoms has of course, almost no connection to healing the disorder itself.

I actually have never heard of anyone being 'cured' of hoarding although hoarding usually does not manifest outwardly as a problem until late adulthood by which time it is far harder to treat, and an adult can simply refuse help anyway. I suspect that many recovered AN patients are never entirely safe from relapse but can certainly conquer it enough to lead full and functional lives.

However these are young DC, and with love and compassion there must be hope. I really applaud the parents on this thread and wish them well.

I was not being smug at all, you've made it that way. If I was being smug I wouldn't have admitted how hard it was and the stages we went through. All I have done is said what worked for us

@FrasierCraneDay I'm just an observer here (I've worked with younger children with this problem in the past so was hoping I could offer something, but soon realised I couldn't) but you were absolutely being smug, and actually quite aggressive in your first post.
And you didn't.just 'say what worked for you' you made it vey clear initially that you thought that the two main mums on this thread should be doing what you did and that you thought they were pathetic for 'putting up with this'.

You're now backtracking, but your early posts are there to see, and they were really unpleasant and unnecessarily brutal.

Thank you to the poster who linked Daum’s website. We have similar issues but for different reasons and I’m hoping this service might be able to help us when so many others haven’t.

Crikey that kicked off since I last looked!

I laughed, out loud, at “I wouldn’t have that.” I am no wallflower, I have ranted, raved, removed all that he holds dear, enforced with any number of his favourite things, removed favourite things, cried, begged, pleaded, ignored, shamed, the lot.

it makes no difference.

I have engaged the services of the doctor who wrote “What to do if your child won’t poo”. And the psychologist he referred us to, is often on the tv talking about autism and how it manifests.

I have implemented her suggestions that I sit him on the toilet for 15 minutes every hour, initially and then reduce once he had got used to sitting. This involved me being parked outside school for WEEKS on end.

He has been admitted to hospital 4 times for enema/manual bowel excavation because he was so impacted he vomited.

And I’ve seen him ingest 200ml of picolax and still refuse to open his bowels.

So, I have no space for “I just wouldn’t put up with that.” @FrasierCraneDay i think you probably mean well, but you don’t know what you’re on about. This isn’t a naughty child that draws on the wall sometimes.

Something I’ve noticed is that he is not appalled in the way that he should be, by what he does. It doesn’t compute. It’s been pointed out that he will be the smelly kid that no one wants to sit with, but that doesn’t go in somehow.

Thanks that is very useful.

Ah so none of these kids Have autism and you r lumped them all as exhibiting this because of trauma? Nice. Cheers for that.

I hope it helps!

Dr Daum was a Paediatric Gastroenterologist whose own child had encopresis, hence he developed his own programme to deal with it. He helped so many families who thought they were beyond help, but his bedside manner could be a bit brusque, so there are some mixed reviews about him.

He was in the US, but did consultations by phone so has helped families everywhere. Sadly he died a year or two ago, so I'm not sure what the format is now.

If it helps, one square of American ExLax is the equivalent to 10ml Senokot Syrup.

@baroqueandblue thank you for this - so useful and definitely food for thought. In fact thank you all for your kind words and support, apart from the advocate of a prison camp 🙄and I'm so glad the OP started this thread or else I'd still be sat there with no clue how to proceed!

Well since I started this, there has been something of a Spartacus moment of poo-club members outing themselves via PM. It’s a club no one wants to join but it’s kind of consoling that we are not alone.