Around age 3, most typical kids are potty trained. That should be our ultimate goal too. It absolutely might take longer because it is much more complicated for our kids, and that’s okay. But it’s psychologically important for a child to hit milestones around the developmentally appropriate ages. Many kids with Spina Bifida do become socially continent with a bowel program (and often cathing) around age 3. If your child is 10 and doesn’t have a bowel program, now is a great time to start too. The important thing is to work toward bowel continence. As our kids get older, it becomes increasingly more important socially, emotionally, and for their health.
Yes, there are a rare few kids with Spina Bifida who can potty train typically. For most of our kids, that is not going to be the path. Some of us had to try that first though–sticker charts and all. And that proved to us that we would need to take alternate methods. Please don’t feel defeated. Your child can still become continent in his or her own way, and there are plenty of people in this community who have been there, done that, and are willing to help you.
Some parents are so excited to start a “big kid” bowel program, and others are scared to death. Just remember these are your feelings and not your child’s. It is important that parents take the lead with a positive attitude. Remove your grief about Spina Bifida from the situation, and treat this as what it is–toilet training.
A very effective first approach for many kids is the cone enema. You can read all about it in the Cone Enema section of this web site, but one of the biggest appeals is that a parent can get started with this program even if they do not have access to a doctor well versed in social continence programs. You can simply buy the supplies on Amazon and get started on your own.
Others may choose to go directly to a bowel bootcamp where knowledgeable medical professionals can get you started on a pretty successful program in about a week. Many of these programs use balloon enemas. It’s the same concept as the cone enema, and which a doctor uses is a matter of preference.
A more recent (at least in the United States) approach is the Peristeen. While some start with the Peristeen, many say it works better on older children. Because the process to get insurance approval can take months (sometimes years), many parents go ahead and start a cone or balloon program while they are waiting. The advantages of the Peristeen are that a teen or adult can potentially do it independently, and it may clean out faster. However, it doesn’t work for everyone.
Most medical professionals want parents to try various bowel management strategies before trying surgery, but some surgeons are very proactive with performing the MACE or similar surgery on very young children.
The goal of any of these programs is to clean out the descending colon and rectum once per day (or every other day) so that there are no accidents in between. Obviously another goal is to prevent constipation. Once the bowel is cleaned out, it’s easier to start working on bladder continence (if not already begun) because the bladder works better without a full colon pressing on it. Also, once stool accidents become highly unlikely, even if the child is not bladder continent they can begin wearing big kid undies with an incontinence pad. Exciting!
As the child reaches upper elementary age, start thinking about independence. If you are using a cone enema, will your child be able to do that program independently at age 18 or 45? If you think not, it may be time to try the Peristeen or start looking into the MACE or Cecostomy.
Finding a social continence program that works for your child and will carry them into adulthood is a huge accomplishment that will hopefully prevent many social and health problems for them down the road.
Next: Teens and Adults