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This post is sponsored by AeroFlow Urology, but all opinions are my own.
Today’s topic may be a little graphic. It’s one of those things in life that hardly crosses our minds when working perfectly, but it can make us absolutely miserable when its function is compromised. To put it bluntly, today I am talking about bowel movements (okay, poop), and specifically how we’ve dealt with the challenges surrounding a neurogenic bowel.
Consider yourself warned: this is a descriptive post!
If you have a child with Spina Bifida or incontinence issues, hopefully this info will arm you with confidence as you problem-solve and find solutions for your child. Every child is different, and trial-and-error is part of discovering what works best for them!
With my first two babies, I took their bodily functions for granted. They ate, they pooped, they grew, they thrived. The only diaper-related complications we had were our own doing, caused by the choice to cloth diaper. Although cloth diapering was a smelly job, we had no concerns about the quantity or consistency of poop. Their little bodies functioned normally, and we learned how much we took that for granted when our 3rd baby came along.
When our youngest was born, we were told that he would have a neurogenic bowel and bladder due to nerve damage from Spina Bifida. His NICU doctors didn’t have much to offer besides a “wait and see” approach, which involved watching diapers and making sure a healthy amount was exiting. But when we switched doctor teams to a larger children’s hospital, they were more proactive in their management of the neurogenic bladder and bowel. They got us started on a catheterization schedule when he was 2.5 months old, and began to plan for the day we’d start a bowel program to keep the stool moving out.
What Is a Neurogenic Bowel?
“Neurogenic bowel is the loss of normal bowel function. It’s caused by a nerve problem. A spinal cord injury or a nerve disease may damage the nerves that help control the lower part of your colon. This is the part of the body that sends solid waste out of the body. This problem gets in the way your normal ability to store and eliminate waste. It often causes constipation and bowel accidents.” (source)
Since peristalsis (the movement that happens in the colon to move stool out of the body) doesn’t happen properly with a neurogenic bowel, this can cause at least two bowel issues (or a combination of the two) – constipation (not enough poop coming out) and/or accidents (the inability to control bowel movements).
“The muscles and nerves around your rectum and anus need to work together for your bowels to work properly. Nerves control the muscles of the rectum, and they signal when the rectum is full. Damage to these nerves can interfere with bowel control. The damage may reduce the peristalsis in the muscles around the colon. The damage may block signals to or from the rectum and anus. This means you may not feel when you need to have a [bowel movement, or BM]. Or you may not be able to have a BM when you want.” (source)
When our son was a tiny baby and only drinking breast milk, he didn’t have issues with constipation, and instead had the opposite problem – lots of bowel movements, all day long. I was thankful it was coming out, but that did present its own set of challenges (like constant diaper rash)!
Liquid Glycerine to the Rescue
Around 4 months old, his bowel movements changed in frequency and consistency (though his diet remained the same). There was more texture, signifying a slowing of motility in the colon, and he wasn’t going enough, so we had to intervene. We began to use the baby-sized liquid glycerine suppositories most pharmacies carry, and that worked well for a little bit. Then we hit another bump in the road when the baby suppositories lost their effectiveness.
I learned through other experienced parents that the baby-sized liquid glycerine suppositories are often not enough glycerine to stimulate the level of peristalsis that’s needed in a child with Spina Bifida, so we tweaked our amounts. Eventually we learned that our little one needed one or two adult-sized liquid suppositories to get things moving appropriately (and as a side note, only liquid glycerine is effective for a neurogenic bowel. The hard glycerine tablets do nothing, although many doctors and pharmacists insist on trying those instead of liquid. I tried a hard glycerine suppository once while in the hospital, to appease the resident that was insisting they couldn’t get liquid unless I tried the tablet first. It was useless, and they eventually got the liquid version ordered up from the pharmacy).
The liquid glycerine suppositories worked successfully for over a year. Some nights we had to give more quantity than others, but the poop kept flowing and we stuck with what was working. Until it stopped working. Then went back to the drawing board and did more research.
I knew a nightly high-volume enema was our ultimate goal, but most urologists don’t recommend starting this until the age of 2 years. My son’s urologist’s office suggested using half of an adult saline enema to encourage evacuation if the glycerine wasn’t working alone, so I began to experiment with saline enemas (I tried a mineral oil enema once, but it didn’t work…I wasn’t thrilled with the ingredients anyway).
I tried to only use the saline enemas when there hadn’t been enough poop for a day or two, but quickly realized I was setting up our little guy for a constant “yo-yo” between constipation and normal evacuation. So I embraced the inevitable, and when he was around 15 months old, I started a regular schedule of doing “mini enemas.”
I had several complicating factors in our son’s development to work around, including the fact he could not sit up by himself. The recommendation to start a bowel program around the age of 2 is probably influenced by several factors (including coverage of supplies by insurance), but one of these factors may be related to core strength.
Children with Spina Bifida often have some delay in developing the strength needed in their core to sit on the toilet or a potty chair for the 40-60 minutes needed to empty the bowels. Since he could not do this, I had to improvise and figure out another way to make it happen. I laid a few chux pads (disposable underpads) under him, and strategically folded the edges so that the expelled liquid would be held in the chux pad and not run all over the bed.
This “chux enema” method worked well, and the mini enemas morphed into larger quantities of enema solution as he grew. By the time he was 2 years old, I was instilling 1.5 to 2 adult saline enema bottles each day. I was trying to avoid spending money on a cone enema kit at the time, but in hindsight, I should have bought one much sooner (it makes it SO MUCH EASIER). Instead of using a cone kit, I would squeeze each enema bottle in, one right after the other, and then use my fingers to apply enough pressure to the buttocks to prevent the enema solution from coming right back out. (along with a neurogenic bowel comes sphincter dysfunction, which means retention of the liquid can’t be controlled).
Each child’s needs will vary on how long they need to hold in the solution, and though the urologist said to aim for holding it in for about 5-7 minutes, I’d allow it to flow earlier if his body was kicking into gear to get things out. Sometimes it only took a few minutes for this to occur.
Home Delivery of Diapering Supplies
I used to purchase incontinence supplies from various local stores, but it made for a LOT of extra errands. I would get diapers from one store, chux pads from another, and disposable gloves from a third. When my son turned 3, it was time to look into having these supplies covered by his Medicaid insurance, so I did all the running around to get prescriptions from the doctor and get them to a DME company (DME = durable medical equipment) that could supply his needs (then I got to do it all over again when the prescriptions got “lost” in that company’s files). The hassle was worth it, since it’s been SO WONDERFUL to have boxes show up on my doorstep every month, cutting out multiple errands in one fell swoop. However, there’s a better option out there that will spare you all of the “run-around” I went through, if your child qualifies.
AeroFlow Urology is a DME that provides incontinence supplies to children with Medicaid (many children over the age of 3 or 4 qualify for supplies at no cost, depending on their location, benefits, and medical plan). I have heard so many positive things about their company from other parents, so looked into them for my son.
AeroFlow can supply chux pads, gloves, wipes, liners, diapers, etc. They ship the Cuties brand of diapers, which are hypoallergenic and go up to a size 6. We’ve been using Cuties for several months, and have been very pleased with their quality.
The thing that gets me most excited to share about AeroFlow is the level of customer service they give every month. There are no extra phone calls to remember to make, because they call you to double-check on sizing, and then your supplies are shipped to your door.
The DME company we use for my son’s supplies doesn’t call me automatically. Instead, they wait for me to call them every month, and just maneuvering the automated phone system is a pain (that might sound a bit ridiculous, but when most of the medical supply calls I make involve talking to computers that can’t distinguish between the background noise and my voice, as well as sitting on hold incessantly, it’s a very helpful service when a company calls me when it’s time to place a new order). I wish AeroFlow was in-network with my son’s medical plan for this reason alone!
To see if your child qualifies for supplies through AeroFlow, click here to fill out their short application form. It took hardly any time for me to enter my info (2 to 3 minutes tops!). The hardest part was getting up to find my son’s Medicaid ID number. 😀
A Continence Care Specialist will reach out within 1-3 days of filling out the form (it was a matter of hours for me!), and they will keep you updated on the status of your application. If your child’s medical plan is in-network with their company, they will contact the doctor you specified in the application form to obtain prescriptions. Once those have been written, supplies can be at your door within 7-10 days!
Medicaid coverage of these supplies is contingent upon your child’s diagnosis, the Medicaid plan your child is on, the child’s age, and what supplies the doctor will sign off for.
AeroFlow makes a complicated application process very seamless. If your child has health issues that require diapers, pull-ups, liners, or any other supplies that could be covered by Medicaid, it’s worth filling out AeroFlow’s form to see if they can help.
Thanks to companies like AeroFlow, I have the supplies I need delivered right to our door, saving valuable time, energy, and resources!
Feel free to share this with friends, and let me know in the comments if you get a chance to fill out the form! I’d love to know how your application process goes!