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@onetiredmama — Welcome to Mayo Clinic Connect!
It must be extremely stressful for you to deal with your son’s problem all alone, especially since you don’t feel well yourself.
Toilet training can be very complicated. Out of my 3 children only one toilet trained easily.
My son also developed severe constipation and fecal soiling. The longer they hold the stool in when the urge comes to go, the more difficult it will become to pass a normal stool. Fecal soiling happens when the colon is so full and enlarged by hard stool that more liquidy stool runs down outside the large stool.
It sounds as if your son has had extensive testing done. Did he have any more radiological testing than a regular X-ray? They also often take a video type of X-ray while the child voids. It’s called a VCUG and can detect if there is an anatomical abnormality.
It’s possible that severe constipation could cause a urine problem by putting pressure on the bladder and interfere with all the nerve impulses needed to void normally.
Did the doctors check for a neurological cause?
I believe it’s true what they say that it has taken a long time for the constipation to become this severe and it will take time to get back to normal.
It’s a good idea to keep regular contact with the gastroenterologists so that your son will make progress emptying his large intestine.
It’s also possible that your son is too young to benefit from physical therapy and biofeedback.
It must be very upsetting for him to have to deal with this, especially in school. Does he have some form of underwear protection in case he doesn’t make it to the bathroom? Does the nurse’s office have a private bathroom?
I also think he will eventually outgrow it, especially if he gets his constipation under control.
I don’t think motivation is an issue, he’s still so young and it’s probably overwhelming.
It’s probably a good idea if he can speak to a psychologist about how he feels about all this.
I also hope that you can talk to someone about the stress you experience. It’s not easy for you.
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Thank you for your kind message and questions. Unfortunately, in a year and a half we have only gotten one 10-minute visit with the gastroenterologist and then they said "see you in five months," so it hasn't felt very integrated with the other care they are providing at the hospital and it has not felt supportive at all. And yet, urology and PT have said we can't address the urinary incontinence until the fecal incontinence is sorted.
My son has always had multiple voluminous poops a day and never strained, so I never would have imagined he was constipated (at least until kindergarten when he must have begun withholding at school and then accidents became frequent in the afternoons) but, yes, they assume he has encopresis. They have not done other imaging besides the xray, and that only once last January. Thanks for info about the VCUG. Nothing neurological has been suggested/considered/treated.
He has access to the nurses bathroom because I requested a 504 accommodation but it is literally a 5 minute walk from his classroom. He has such urination urgency and frequency that he often doesn't make it in time and it takes so much time away from school for him to go as often as PT has prescribed...Then his teacher talks about it in a very loud voice both at pickup and when she notices he has leaked and so he is all the more overwhelmed because "everyone knows."
PT has said that part of the problem is he has been wet for so long that he literally doesn't know what it feels like to be dry, so nothing has been recommended in regard to protective products. He never emptied his whole bladder in his clothes until very recently, and several times I have picked him up from school and he has been soaked front and back. I am so embarrassed by it, because then I too feel like "everyone knows" and I want to run away in shame because it feels like the one practical thing I needed to teach my child I completely failed at. And I worry this will become a lifelong problem...
I definitely need to talk to someone too but it is really hard to find anyone and there are so many other pressing medical appointments and things I have to arrange! Not to mention all the laundry I do all day!!!
Thanks again for your care and concern.