Bladder and Bowel Continence | Spina Bifida and Hydrocephalus

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!

Bladder Continence

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:

lack of control of urination
Incomplete emptying of the bladder
and, increased pressure that can lead to complications such as urinary tract infections, reflux (urine forced back up towards your kidneys) and kidney damage.

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:

The purpose of telling this story is to impress on all of you how quickly what Dennis and I thought was the flu could mask a developing bladder infection that went out of control in such a short period of time. Bladder infection symptoms are so similar to those of the flu. We thought we were on top of the situation. For over thirty years we had dealt with his neurogenic bladder and bowel and thought we knew the difference between a bladder infection and the flu.

If you are experiencing flu-like symptoms, seek medical attention immediately and insist that they check bladder functioning. Don't make assumptions as one can never be too careful. Read more...

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:

Clean Intermittent Catheterization (CIC)
Other types of catheters-condom catheter, indwelling foley catheter, suprapubic catheter
Medication
Crede technique (pushing on bladder with your fingertips)
Urinary diversions-ileal-conduit, continent stoma, vesicostomy, Mitrofanoff procedure
Surgical intervention-bladder augmentation, sphincter tightening
Biofeedback and electrical stimulation
Botox treatments

An effective bladder program will reduce common problems such as UTI’s, overfull bladder, bladder and kidney stones, reflux, hydronephrosis and bladder accidents.

Healthy Lifestyle Choices Can Help Prevent UTI’s

Urinary tract infections (UTIs) are one of the most common and costly secondary health complications for people with spinal cord injuries. Neurogenic bladders, resulting from spinal damage, require the necessary practice of intermittent catheterization, which can introduce unwanted bacteria into the bladder. These unwanted microbes can cause recurrent bladder infections and these may lead to many debilitating and life threatening conditions such as fatigue, fever, autonomic dysreflexia, sepsis and kidney failure. The most efficient and natural treatment for UTIs is prevention. Read more...

Dr. Sender Herschorn, noted Urologist and Researcher from Sunnybrook Health Sciences Centre presented at the 2005 SB&H Annual Meeting.

The important issues that I would like to talk about are urinary incontinence and urinary tract management, prevention of kidney failure, and also touch briefly on sexual function and fertility as it relates to the neurogenic bladder. Read more...

Bowel Continence

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.

Imagine sitting in the front row of a university lecture hall early one morning, surrounded by 200 fellow students. Suddenly you feel your stomach contract. You hold your breath and your body freezes. “If you don’t move, then you should be O.K.,” you say to yourself. But the bowling ball in your abdomen keeps moving ahead. The pressure grows and no matter how still you sit, you can’t prevent the inevitable. You panic, as you know that you will most likely pass gas and will pass feces along with the gas. Your throat constricts, your thoughts pound in your head, you grip your desk as you wait for the horror to happen.

For many people with spina bifida this represents a series of events that plays itself out all too often. Fecal incontinence can have devastating effects on one’s ability to live a full and independent life. This article explains it in the context of spina bifida and outlines the latest development to address this highly personal issue. Read more...

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:

Habit training
Digital stimulation
Disimpaction
Stool softeners and bulk formers
Suppositories
Laxatives
Enemas, fleets and enema continence catheters
Diet and exercise
Anal Irrigation

My name is Brock Edward Masters and I was born in Ottawa on April 8 1980. I was quite a handful for my parents right from the get go...On top of all the obvious bumps, bruises and physical injuries that I had brought upon myself over the years, I was experiencing a pain that I hid from my family and even my closest friends. It was a pain that would not go away, an emotional wound that to this day brings back difficult memories. As a child I was cursed with the inability to control my bowels. There was neither rhyme nor reason for the problem, only the certainty that I was just going to keep having “accidents.” Read more...

Lieke will sit on the toilet for 20 minutes every second day waiting for her bowels to empty. At the age of three she is happy to play with her Barbie dolls – and when she learns to read, a good book or magazine will fill her periods of waiting.

Being a bright child with lots of energy and courage, Lieke is ready to start pre-school. She will go to the same primary school as her sister Eline, who is 5. Lieke faces certain physical challenges because she was born with spina bifida (a lower spinal cord deformity). She is fast learning to walk after two operations to straighten her legs. Her persistence is admirable. Read more...

After a complicated pregnancy and a difficult birth, Emil was born. He had spina bifida, which was quite a shock for his parents. "Emil was transferred to Lund (hospital in Sweden) for immediate surgery and the whole thing was very confusing and shocking," explains Emil’s father, Tommy.

Emil came home and the confusion continued. A few months later, two aunts came to visit and Tommy heard about a network of families who were in exactly the same situation as them and realised that there was hope of getting help. Read more...

Peristeen Anal Irrigation in practice - “New body sensation developed”

Caregiver Sandra Rust works for ParaHelp, an association for outpatient counselling on the care and rehabilitation of people with paraplegia, in collaboration with the Swiss Paraplegic Centre in Nottwil, Switzerland. Collegial has spoken with her on her ﬁrst experiences with Peristeen Anal Irrigation. Read more...

Learn more about Peristeen

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