New Bowel Program Guidelines for Pediatrics

Posted by Nurse Linda in Daily Dose on April 27, 2021 # Health

Neurogenic bowel is a disruption in nerve communication. Messages to and from the brain and the bowel are interrupted due to issues from medical conditions or trauma. It causes an inability to control bowel movements either by developing a reflexive bowel (too much tone) or flaccid bowel (little to no tone).

The source of neurogenic bowel can be from an issue within the brain, spinal cord, or both. Spinal cord injury, brain injury, stroke, acute flaccid myelitis, multiple sclerosis, tethered cord, and spina bifida are medical conditions that are commonly associated with neurogenic bowel in children.Child being lifted from her wheelchair

When children are born with neurogenic bowel, develop it in infancy, or anytime it occurs in childhood, a bowel program should be started. Since infants and young children typically wear diapers, all too often instituting a bowel program is overlooked. This is because stool can partially be expressed from the rectum. However, the bowel is not functioning fully. Not instituting a bowel program even at a very young age can lead to blockage problems, over-stretching the bowel and long-term consequences for life.

Another complication is that people typically have never heard the diagnosis of neurogenic bowel, so they are unfamiliar with it. They look at a child’s stool. It is usually hard and dry. As individuals inexperienced with neurogenic bowel, they think constipation, so they devise a plan to correct constipation, but this will not treat the source of the issue. Indeed, unattended neurogenic bowel can lead to constipation. But treating constipation does not treat neurogenic bowel. A bowel program developed for your child specifically for reflexive neurogenic bowel or flaccid neurogenic bowel needs to be devised and carefully followed.

Therefore, it is critical to your child’s health to institute a bowel program as soon as neurogenic bowel is diagnosed. Basically, a bowel program for reflexive bowel consists of a suppository followed by digital stimulation. A flaccid neurogenic bowel program is the manual removal of the stool. There are more details, but this is an overview of the program. More about bowel care can be found on the Christopher & Dana Reeve Paralysis website.

Because children’s needs vary, understanding the nuances of a bowel program varies by age and size of the child. The bowel program of an infant or small child will be somewhat different for an adult-sized teen. The overall process is the same but managing and advancing different aged children’s bowels changes over time.

You have probably been taught the basics of bowel programs by your healthcare professionals. Hopefully, if your child is new to neurogenic bowel, you have been instructed in care. If not, it is time to ask for a bowel program for your child. The next steps are to know the questions to ask and how to advance your child as they grow and develop. Transitioning to independence, including performing the bowel program, is something to be thinking about for the future.

Some helpful tips can assist you. First is how to talk about stool. Describing bowel output can be confusing and difficult. What one person sees as diarrhea is not such an issue to another. Therefore, the terminology has been standardized to help you describe issues to your healthcare professional and caregivers. This is through the use of the Bristol Scale, which identifies the characteristics of various types of stool. Here is the chart:

It is important to follow the consistency of stool over time to adjust for constipation and diarrhea issues, both ends of the Bristol Scale. Making slow adjustments over time, not radical changes, will keep the stool at a normal or easy-to-pass consistency. Tracking stool can be done on the Bristol Stool App. You can obtain the Bristol Stool Chart App for free on the App store. There are a variety of other stool charts that are also free. These are especially handy for the following progress over time. It was really difficult to remember stool quality two weeks ago, so tracking can help follow the progress and make any changes. If multiple caregivers are providing services, this can coordinate the entire bowel program.

A second tip is the publishing of an extremely helpful bowel program manual by the Spina Bifida Association. This guideline has been recently released. It contains a comprehensive bowel program information guideline that can be used for any child with neurogenic bowel regardless of the source of the issue. Your child may have spina bifida or may have neurogenic bowel from another medical condition. Make sure to read the Guidelines for the Care of People with Spina Bifida to find out more. There is a chapter about bowel care within this guideline beginning on page 186.

The Spina Bifida Association’s guideline contains information by age. Since there is such variability among children of different ages, these guidelines can assist you with understanding your child’s current needs as well as what to expect in the future and how to advance your child. This will give direction about questions you may want to ask your own healthcare provider. This guideline is specifically written for individuals with spina bifida, so some of the information may not be pertinent to your individual needs, but it will give you a head start in knowing what should be happening.

If you think in general terms, the sections about mobility, sexual issues, and individual educational planning in schools can also be a helpful resource for adaptions for your own needs and plans. The entire guideline is full of information that healthcare experts have validated.

You should always use the information provided by your healthcare professional for the bowel care of your child first and foremost. However, educating yourself and your child about advancing techniques and processes can help you ask questions to improve care. Additional pediatric bowel program outlines available on the internet can be used as a framework for establishing and progressing a bowel program. Here are some sites about neurogenic bowel care:

Nationwide Children’s Hospital

For Teens, the Adult Guidelines from the PVA are helpful.

The important issue is to provide your child with bowel care if they have a neurogenic bowel diagnosis. If it is not offered to you, ask. Be prepared with information from the sources above. Be able to talk about stool consistency over time, note any incontinence or abdominal distention or discomfort, ask about issues related to proper bowel care. Ensuring bowel evacuation through the use of a bowel program will ensure your child’s bowel health for a lifetime. Nurse Linda

Linda Schultz, Ph.D., CRRN, a leader and provider of rehabilitation nursing for over 30 years, and a friend of the Christopher & Dana Reeve Foundation for close to two decades. Within our online community, she writes about and answers your SCI-related healthcare questions in our Heath & Wellness discussion.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.