Achieving bowel and bladder continence for individuals with spina bifida is a vital part of staying healthy and being independent. Both systems need to be monitored and assessed throughout life. It is a major goal that children, parents, adults and health care providers always hope to reach, however, getting there can be challenging.
Most individuals with spina bifida do not have intact nerve pathways in the spinal cord to signal a bowel movement or that their bladder is full and needs to be emptied. This is referred to as a neurogenic bowel/bladder:
This section of the website will provide information to assist parents and adults to work with their health care professionals to manage bowel and bladder continence.
If you or someone you love is dealing with continence issues related to spina bifida, you are not alone! At SB&H, we not only have some of the latest and best information, we can connect you with others who are willing to share their ideas, experiences and lessons learned about bowel and bladder management. We understand that these are sensitive and difficult issues to discuss and they can greatly impact health, social and emotional well-being. We can help!
Most individuals with spina bifida will have bladder function issues due to nerve damage which interrupts the messages between the bladder, sphincter muscles, spinal cord and the brain. The amount of damage and bladder control varies depending on the location of the lesion. A bladder management program is also based on individual needs and which methods work best.
The priority is to preserve kidney function as long as possible and manage urinary continence. A bladder that does not work normally might not empty properly and urine may flow back into the kidneys leading to urinary tract infections (UTIs) and other life threatening issues.
The Neurogenic Bladder
People with spina bifida, particularly the myelomeningocele form, "have impaired autonomic [nerve] function and may therefore have absent or minimal sensation of bladder fullness and an inability to initiate the voluntary, coordinated process of urination." (Sandler, Adrian (1997). Living With Spina Bifida, A Guide for Families and Professionals, University of North Carolina Press, p.25). Autonomic nerves are responsible for transmitting messages from organs to the brain. In this instance, the message that your bladder is full does not get properly sent to the brain. Also, the nerves that control voluntary muscles like the urinary sphincter and the relaxation and contraction of the bladder itself don't work properly. This miscommunication between your brain and bladder can cause several problems including:
Without proper management, these problems can lead to life-threatening kidney failure or blood poisoning!
There are too many tragic stories to sit back and do nothing. Bladder infections and other problems are serious and need to be treated quickly:
Regular visits to a urologist is paramount. These visits could include various tests to monitor your bladder and kidneys such as a renal and bladder ultrasound, renal scan, intraveious pyelogram (IVP), voiding cystourethrogram, urodynamics, cystoscopy and urine tests.
Urinary Continence Programs/Methods:
An effective bladder program will reduce common problems such as UTI’s, overfull bladder, bladder and kidney stones, reflux, hydronephrosis and bladder accidents.
Dr. Sender Herschorn, noted Urologist and Researcher from Sunnybrook Health Sciences Centre presented at the 2005 SB&H Annual Meeting.
Each person’s bowel program is based on their individual needs and which methods work best for them. To manage bowel continence you may need to explore a variety of options before you find the right fit for you. A good bowel program aims to keep stool firm, empty the bowel at a specific time daily or every few days and not to have any bowel accidents.
The Neurogenic Bowel
Most individuals with spina bifida will have common bowel problems as well as the bladder issues related to the damage to the nerves responsible for the sensation of bowel fullness and emptying. Constipation, impaction, diarrhea and bowel accidents are all possible. Signs of bowel problems can include hard stool, no stool, poor appetite, abdomen is enlarged and feels hard, blood in the stool or loose stool that leaks around the hard stool.
Exercise, drinking plenty of fluids and eating a healthy diet high in fiber can help in achieving a bowel program that works for you.
If a bowel management program is not effective, surgical treatments may be needed. These may include the cecostomy/c-button procedure or a colostomy.
Bowel Management Programs/Methods:
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