My son who will be five in April was "diagnosed" around his birthday last year. He was soiling up to three times a day so for us it was pretty easy to work out once we saw a Paediatrician.. Unfortunately because of his age we had been assuming he had just never toilet trained properly.. Our first visit to the Paediatrician involved the Dr feeling Ethan's abdomen and telling us he could feel some poo and that the best course of action would be to start taking Ozmolax and see an Occupational therapist. We saw the OT and she advised us to have Ethan sit on the toilet three times a day and chant "ooooo" "eeeee" and "rrrrrrrrr" to help him move the poo out.. He would sit on the toilet and tell us "I don't want to poo" and he would quite literally choose not to poo which is really what this condition is.. It isn't (and I say all this as someone who has read a shitload, pun intended, of information and personal experiences from other Enco parents) 99.5% of the time it isn't diet, your child doesn't need to increase the fibre in their diet, eliminate certain foods or drink more water.. The time for that has passed for now.. Something to consider in conjunction with dealing with the soiling, but at this point in time and for whatever reason your son has held on to his poo so many times that it is now automatic and even if he wanted to the reflex action when he feels a poo knocking at the back door is to hold it in.. What happens when he holds that poo in is that more water is drawn out of the poo the longer it is in there and the harder it gets.. Poo backs up behind that poo and this continues until either there is a super poo or as we used to call them before they stopped coming out at all a "holy moly" or the poo just continues to back up and once it is backed up high enough the liquid poo coming from your stomach all that way up just oozes around the blockage and into their undies.. They don't feel it and after a while they even can't smell it..
Welcome to the shittiest condition there is.. It is confounding and seems to defy logic in it's very nature..
First places I would advise for the best information on this condition is www.gikids.org go straight there and watch the video "the poo in you" it is designed for kids but it explains what happens in the body when poo backs up and soiling occurs..
The next port of call should be www.encopresis.com this is the website that I found the best and it also had a treatment plan I believe is scientifically sound. To add info as to why I ended up choosing this is because we did what the Paediatrician told us to.. We did what the OT told us to do.. It actually got worse.. He just refused to poo and it was that insight that also showed me what we were facing.. How can you fix a problem like that if the child won't help. You can't make a kid poo.. Well, actually you can.. We use the Soiling solutions program and it is the best investment I have made in my son's future (approx. $100 aus dollars for a manual and the best support group ever).. I won't hide the fact that the program uses suppositories and enemas. It is because of these products and techniques that my son hasn't had poo in his undies at all this year and last year when we had a run of soiling after some initial success that all my reading and research led me to the understanding that we hadn't gotten all the old poo out like I thought we had and an xray showed he had poo backed up his colon to his ribcage.. Life can't be fun when you are literally full of shit.. The Paediatrician was extremely surprised by the xray as he had only felt a small mass of poo.. You can hide a heap of poo inside a little kid.. So we actually went in to the hospital and had Glycoprep put through a nasogastric tube until the Glycoprep had broken down and flushed out all the old hard poo.. Since then using the program he hasn't soiled his undies at school since.. theory is, in the first instance, if you have gotten all the poo out once a day then there is nothing left to come out in the undies.. No stress for the child and you don't dread opening the school bag to find pooey undies and you also know that there is no tell tale smell for the other kids to pick on..
The main things I have learnt -
Dr's in Australia are clueless as to treating Encopresis and you can end up doing the same thing for years with no results. They are also very unsure about using enemas and suppositories and my own Paediatrician asked me how my son reacted to having a microlax enema (it's 5ml of liquid in a little tube with a long but pliable nozzle that I insert in to my little man's bottom every morning to make him poo, we call it "bottom medicine") and I was able to tell him that me son takes a Microlax 10,000 times more easily than he will swallow Panadol..
He was just surprised that we were comfortable using an enema product when as a western society we are very weirded out by putting anything in our children's bottoms.. I get it.. No-one actually wants to do it but It has totally made the most amazing difference to my little man's life.. He is happier and healthier for not being full of shit..
There pretty much isn't a quick fix for this but I can assure you that of everything I have read Soiling Solutions is the only one that I believe that seems to work in fixing the problem.. I will probably be assessing my son's "output" for a couple more years to come (he's one of the harder cases because he is ADHD he literally doesn't want to stop and poo) but I don't get surprised every day any more with the undie count and he doesn't have to suffer the taunts of the other kids.. That is priceless..
I hope I haven't freaked you out.. I am an open book and I tell you this because I don't want you to feel alone or that no-one gets it.. I get it and I know that it is a tough and pretty Taboo subject.. I am happy to have a chat or answer any questions you have because I just don't want to see any other children suffer any longer that necessary and that goes for the Mum's and Dad's too.. I am always happy for a chat if you like..