So glad you asked! We have strong feelings about the importance of a good bowel management program. Spina Bifida almost always causes some level of nerve damage to the colon, which can mean slow motility (the colon can’t squish the poop downward), lack of sensation that there’s stool in the rectum waiting to come out, and/or the inability to hold it in until an appropriate time and place (like, say, on a toilet).
The most important goal is to prevent constipation. We have a common enemy, and that is poop. Constipation stretches out the colon, which leads to megacolons that get even more easily constipated. Constipation can cause shunt malfunctions, UTIs, diarrhea (because only liquid poop can get around the blockage), decreased appetite and nausea, worse urinary incontinence, and sometimes hospitalizations or surgery for impaction. It’s bad, and we have to prevent it.
Effective bowel management also prevents accidents, constantly poopy diapers, diaper rash, skin breakdown, blowouts, and an exorbitant diaper budget. Many people think that because their child is having constant bowel movements, they aren’t constipated. Actually, the colon is probably full of poop, and it’s just getting pushed out little bits at a time. Without a good program, we are pooping constantly and in a constipation/blowout cycle.
The psychological damage of incontinence is just as important. Let’s face it: smelling like poop is not socially acceptable. Many school age children miss class to be changed (or get sent home regularly), are embarrassed to wear diapers and have accidents at school, feel frustrated, are victims of bullying and ostracism, and lack privacy, independence, and self-confidence. As they get older, incontinence can impact their social lives (think: sleepovers in diapers, blowouts at soccer games, and accidents in the pool) and romantic relationships. Young adults don’t want to be dependent on their parents to help them with their bowel problems, and let’s be honest, it’s pretty stressful for caregivers too. Constipation and accidents can greatly interfere with college and careers, and many adults feel trapped in their homes on “bad bowel days.”
Is there any hope?
YES! It probably won’t be easy, but the vast majority of people with Spina Bifida CAN become socially continent with an effective bowel management program. We don’t have to live our lives with the constant interference of poop. We can set predictable, manageable programs that allow us to control the poop so that it doesn’t control us.
Next: BM 101