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???