It’s probably safe to say that all parents get over being squeamish about poop after, well, a week. Those first infant tarry poops really just get you right in the poop game! Then as your child gets older, you experience other milestones such as when they first start eating food and the poop just changes. And stinks. And is all sorts of crazy colors. Their first poop on the potty. The first poop in their undies after they’ve been “potty trained”. Or the first poop they carry to you. Then there’s those parents that get to experience constipation, or the other extreme…
Suffice it to say that poop is just part of having children. We were very fortunate with our first two in that constipation was never an issue for them – way too much fruit in their diets! It always amazed me when another parent would remark that their child goes DAYS between bowel movements. The boys in this house are poop machines! More than you wanted to know, right?!
Well, this post isn’t about your typical poop stuff that you see with most kids. This is about poop and kids with spina bifida (or any other diagnosis that includes a neurogenic bowel). I’m going to write this post in more of a generic sense because I’m guessing as Colten gets older, he won’t really want the specifics of his personal bathroom duties outlined online. Let’s start with the definition of neurogenic bowels – just so you can see how confusing and frustrating the whole thing is to begin with. From the Mayo Clinic:
“Signs of neurogenic bowel include loss of bowel control (bowel incontinence), constipation, bowel frequency and lack of bowel movement.”
So you have both loss of control and constipation, too many movements and not enough movements. Yup, that sums it up. It is complete bowel chaos. This isn’t necessarily a huge deal when you’re a baby in diapers, but for many people with Spina Bifida and other spinal cord defects/injuries, this could eventually become a social concern. And really, it is a big deal when you’re in diapers because you still have the issues of going too much, or not enough and it stinks to high heavens, or its runny and breaks your skin down, or it’s hard and tears your skin up, or its grainy and roughs up your behind… get the point?
So how do most people with Spina Bifida handle it? MANY DIFFERENT WAYS. There are surgical procedures some have as early as 3-4 years old – others have them when they’re adults. Many kids are put on daily Miralax, a laxative (that is not actually FDA approved for kids, nor FDA approved for use longer than two (2) weeks). Some try various supplements from Senna syrup (a natural laxative) to probiotics to digestive vitamins. Some are regimented about their diets and consume certain amounts of prune juice each day. Many of those without surgical procedures that help drain the bowels need to do more to help things flow.
The frustrating part of a child that does not have muscle control down there is that they cannot push, and rarely can they even feel anything moving down there. So what happens in the intestines is that waste products (can we just call this poop from here on out? thanks…) build up and as the poop continues to accumulate, eventually the massive backup will push some out through force. Other things can help move it along – tickling, crying, screaming, blowing bubbles, trying to encourage a child to push, crawling, jumping. But when a child has no feeling of pressure down there and cannot push out, it just comes out when it wants to. The longer it stays in, the more it stinks. So you end up with a diaper that stinks enough that you expect to see an unloading inside, but you end up with a nugget the size of a large grape. Or you get a more liquid release that comes out around a blockage and ends up sitting against the child’s skin and breaking it down. Some kids with Spina Bifida will go through a phase (or years) where they need specialty creams applied to their bottoms due to severe skin breakdown. When you see this type of breakdown, it makes you want to cry! The saving grace is that the kids usually cannot feel it. BUT, it is not healthy to have breakdown there so often as it can lead to longterm issues.
This cycle of pooping/not pooping is where suppositories and enemas come in – often in addition to something from above (such as supplements, oral laxatives, dietary changes, etc…). I’m sure about 80% of you will now exit this blog post because YES, that’s where I’m going next… suppositories and enemas. We didn’t realize that there was such a variety of these items out there, and had some confusion for a while thinking we were giving enemas when it was really a liquid suppository. Anyhow. Suppositories are typically made of some water-based solution, sometimes including glycerin. They might be solid and wax-like or liquid in form. They don’t contain much in regards to volume and their purpose is to stimulate the end of the rectum to get things moving out. Well, when you have a child that doesn’t have very good innervation in that region of their body, suppositories often are just not enough. So some families move to enemas. Pediatric enemas are fairly small in volume compared to an adult enema or high-volume enema. A pediatric enema might contain about 2-2.5 ounces (about 66 milileters; a recommended amount for children 2-11 years old). When you do high-volume enemas, you do 10ml per pound of body weight as an initial estimate. So a child that is 35# would be getting 350ml of fluid – compared to only 66 with an over-the-counter, pre-packaged basic enema. That’s a HUGE difference!
So when the small stuff fails – the diet, supplements, laxatives, suppositories, basic enemas… you move on to the bigger stuff. High-volume enemas. Even within this category, there are options. The two we’ve been looking into are the cone enema and a Peristeen enema. Both require inserting something into the rectal area and flushing water up and into the colon. Both require the child (or adult) to sit on the toilet for an extensive amount of time every day (some can do this every other day)… from a minimum of 30 minutes up to and over an hour.
We have started on this journey as of yesterday and it is interesting, frustrating, heartbreaking, and brings a slight feeling of being overwhelmed. We need to set aside about an hour each evening until we get this schedule figured out at least, to make this happen. Needless to say, we are trying to amass easy table-top activities to occupy a busy 2.5 year old! We are told by many in the Spina Bifida community that the beginning is difficult but the end is so worth it. Accidents can still take place of course even with a consistent enema program, but this management program will hopefully take us a step in the right direction.
While we would have a lot of other hurdles to get over in order to move Colten out of diapers due to a neurogenic bladder as well, not having any more poopy diapers with this child would be amazing!