There are a several reasons children are more likely to have bowel programs than teens and adults. First, bowel management techniques and programs have come a long way in recent years, so they are more readily available now compared to even a decade ago. We all know there are fewer medical professionals who treat adults with Spina Bifida compared to children. And there are a greater range of programs appropriate for children that are not as easy for adults. For example, a parent can lift a child onto a toilet for certain bowel programs, but an adult may not be physically capable of transferring in the same way and too heavy for a caregiver to lift. Finally, it is much easier for a child to recover from a continence surgery than it is for an adult. Parents are wise to start thinking about independence for bowel routines when their children are young and approaching adolescence. However, for those teens and adults who want to start or change a bowel program now, there are still options.
Probably the most effective–and yet most difficult–option is surgical. Several studies show that the MACE or similar surgeries are very effective long term bowel management options for adults with neurogenic bowel. Obviously, choosing to do an elective surgery is a very difficult decision, and it can be a tough surgery. For nearly everyone who does choose surgery, they say it’s one of the best decisions they’ve ever made and they regret nothing, even when they experienced complications and difficult recoveries.
Another option is the Peristeen, which was designed for adults with spinal cord injuries to perform independently. Some adults with SB, especially overseas where it has been available longer, have success with the Peristeen either independently or with the help of a caregiver.
Depending on the person’s level of mobility and physical capability, some adults with SB can perform a cone enema or balloon enema on themselves. A caregiver could potentially help with either option while the person sits on the toilet, reducing the need to lift him/her.
More often, adults with Spina Bifida deal with varying levels of continence with the aid of “controlled constipation” (intentionally staying constipated to avoid accidents … we do not recommend this), stool softeners and laxatives, diet and supplements, suppositories, digitial stimulation/manual disimpaction, and/or over-the-counter enemas. If these methods are not working, we encourage you to consider one of the above options instead.
Next: Diet and Oral Meds