Bladder and Bowel Dysfunction
I am desperate to find other caregivers dealing with this. The chronic stress is so very much, it's really running our lives, and the fact that we make little to no progress after seeing urology, gastroenterology, and physical therapy is disheartening, to say the least.
I am a 100% of the time solo parent to a 6.5 year old boy who I presumably tried to toilet train way too early (19 months) at the urging of his daycare at the time. We went cold turkey with the diapers, never wore pull-ups, and he's leaked urine virtually every day since. Poop accidents were few and far between starting around age 3 and then began to become a more serious problem at age 5, when I asked the pediatrician for help.
One and a half years later, we have had bladder/kidney ultrasound to rule out disease, and a pelvic x-ray which led to referral to gastroenterology for chronic constipation (presumed root etiology of the urinary incontinence), daily stool softeners (Miralax), two colon cleanses (late June and early September of this year), urodynamics and biofeedback training, and now physical therapy all at the same children's hospital where we live. Nothing is working. They say that it's taken years to develop the habits and it can take months and YEARS to fix.
We are talking about anywhere from 2-5 pee accidents a day, frequent bedwetting (that has also become more of a problem over time), and 3-4 times a week fecal soiling. Physical therapy has had us on an hourly toileting regimen, which is is extremely disruptive at school due to the location of his classroom and his need for a private bathroom so he can sit for 2-5 minutes to properly void.
I am working hard to get mental health support to find out if there is an underlying behavioral issue (ADHD?) that may be interfering with his ability to feel motivated to fix this and to support the executive functioning needed to follow the protocol.
Is anyone else dealing with this? I am so desperate for help because I don't really trust the healthcare providers at this point since nothing is helping at all … it's actually gotten worse since we started biofeedback and physical therapy.
To make matters even worse I have pelvic organ prolapse (due to traumatic vaginal delivery / childbirth) and am currently dealing with similar issues in my own body! What fresh hell is this???
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I have a relative who had a childhood incontinence problem. I believe it was primarily at night however. He went to a private grammar school that employed a on-site school nurse, who helped him with any daytime accidents. He eventually did outgrow it, which is of little comfort to you now I know. I looked in a older book on children's health I've saved and it states under daytime wetting "Attention must be given to both the physical and psychological aspects of daytime urinary incontinence". So it does sound like you are already on the right tract, and God willing, sooner rather than later your son outgrows this too.
@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.
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.