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Among the many challenges faced by people with disabilties, their parents, and families, the problem of urinary incontinence remains a high priority. This is because control of bodily functions is a personal and private concern involving the genitals and "private parts," and it affects feelings of self-confidence and self-worth.

Perspectives in incontinence

People with disabilties such as spina bifida, those with cerebral palsy, and some muscular dystrophies experience incontinence involving nerve and muscle control of the bladder and urinary channel. Disabilities also include those with abnormal formation of the bladder, such as bladder extrophy, where the abdominal wall fails to close, leaving the inside of the bladder exposed; or epispadias, where the urinary opening is on the top of the penis.

Treatment considerations for these individuals must be placed in perspective in terms of priorities. These priorities are:

1. Preserving kidney function

2. Avoiding urosepsis (life-threatening spread of urine infection to the bloodstream)

3. Achieving urinary continence

4. Maximizing independence

People with abnormal bladder function are at risk for problems that may shorten life due to infections, kidney failure, pressure sores from wetness, or high blood pressure from kidney damage. Most of these problems can be avoided. Children born with these problems now can benefit from lessons learned in the past.

Looking back

Prior to the 1950s, many people with incontinence were treated by leaving an indwelling catheter to drain the bladder into a bag. The constant contact of the catheter with the urine made infection, stones, and eventual erosion of the urine channel almost unavoidable.

In the 1950s, Dr. Bricker developed the ileal conduit, and through the 1960s and early 1970s this was thought to be the solution to the problem. The ileal conduit worked by bypassing the bladder and substituting an isolated segment of intestine to carry urine from the tubes draining each kidney to a stoma (an opening on the abdomen) and wearing a stoma appliance (an external bag to collect urine). This procedure avoided the need for an indwelling catheter.

Long-term complications, however, from the loss of kidney function to the undesirable aspects of having a stoma and a bag led to abandonment of this procedure.

The next procedure to be developed was urinary undiversion. This was accomplished by the means of a surgical procedure in which a segment of intestine could be added to the bladder to increase bladder capacity. A variety of techniques were developed to improve bladder control. The most significant of these was intermittent catheterization.

Intermittent catheterization--a safer way

Intermittent catheterization involves emptying the bladder periodically by using a clean, non-sterile technique that preserves both kidney and bladder function. Intermittent catheterization, performed whenever possible by the individual, and if not possible, by a caregiver, has achieved the goal of protecting kidneys, preventing infections, and allowing increased independence.

There is often significant resistance to the use of intermittent catheterization on the part of individuals and families. This is partly because it is not obvious that intermittent catheterization is safer than an indwelling catheter. It seems as if there would be an increased risk of injury and introduction of infection by the repeated passage of a catheter. There may also be significant psychological resistance, since most people grow up being told they should not think about their genitals, and by no means should they put anything in them. This resistance is usually overcome if the individuals give the technique a chance and recognize that it does, indeed, allow them to function and that it protects them.

The teaching of intermittent catheterization depends on patient, knowledgeable nursing personnel, and scheduling sufficient private time, free of interruptions or distractions. The only factor that convinces people to use intermittent catheterization is the fact that it works better than any alternative. Initial fears are overcome when they see that it is not painful or difficult (i.e., if you go into a tunnel at one end, you can only come out at the other. There is no chance of coming out in the wrong place or causing damage to another organ.).

In males, flexible catheters can be used. These catheters are kept in a plastic baggie between uses. The patient washes his hands with soap and tap water before and after passing the catheter each time. A single catheter can be used for an arbitrary period of two to four weeks, after which it is discarded and a new catheter is used. In females, because of the physical difference in the urethra, hollow metal catheters can be used. The metal catheters are kept in a container with alcohol between uses and are again washed with soap and tap water before each use and returned to the container.

[We have found that 2-liter soda bottles, before they are expanded in the factory to contain soda, are just the right size to contain metal catheters, and we have been able to obtain these from the manufacturers for use.]

While many individuals prefer to have more than one catheter, a single metal catheter can last for years. About one half of individuals using intermittent catheterization will have bacteria in the urine. When the bacteria remain in the urine and do not affect the bladder wall, positive urine cultures do not require treatment. The significant factors that protect the bladder with intermittent catheterization are catheterizing regularly (usually about every four hours during the day), and most important, emptying the bladder completely. Maintaining a high state of hydration by drinking water is also helpful since this improves the "washout" mechanism by which the bladder is cleansed of bacteria.

Bladder augmentation

For those patients who cannot store urine because of reduced bladder capacity, bladder augmentation with intermittent catheterization can be used. About 20 to 30 percent of children with spina bifida have "failure to store" bladders because the outlet is open and the bladder will leak. These individuals present an ongoing challenge for the urologist. A variety of surgical techniques have been used to try to increase bladder control. The prosthetic urethral sphincter is a device, similar to a blood pressure cuff, that is placed around the bladder neck or "urethra" and fills with fluid from a reservoir adjacent to the bladder within the body. Flexible plastic tubing attached to a pump device placed in the scrotum or labia connects both of these segments. By pushing on the pump, the fluid from the cuff moves to the reservoir, allowing the bladder to empty. After a few minutes, the fluid returns to the cuff and provides continence.

This is a prosthetic device, however, and is subject to mechanical failures such as leakage of the fluid, malfunction, and the cuff being too loose or too tight. Alternative techniques for increasing outlet resistance include a variety of procedures that lengthen and narrow the bladder. These techniques can be done in association with bladder augmentation procedures and with intermittent catheterization.

For individuals with insufficient bladder-outlet resistance (the failure of the bladder to store urine), creating a urinary diversion represents a safe and effective alternative to the prosthetic sphincter or bladder neck procedures. The procedure to create the urinary diversion involves isolating a segment of bowel from the remainder of the bowel, with its blood supply intact. The segment is fashioned into a spherical reservoir and the ureters are attached to the reservoir to allow urine to drain from the kidneys into the reservoir. The opening from the reservoir is usually through a passageway, called a "stoma" in the belly button or the abdominal wall, and the reservoir is emptied every four hours during the day by passage of a catheter through the stoma.

Drugs that may help incontinence

In addition to the surgical techniques outlined above, a number of pharmacological agents can be used to affect bladder control. These include so-called "anticholinergic" agents, such as Ditropan[R], Detrol[R], or probanthine. These medications reduce the pressure in the bladder by relaxing the muscle in the bladder wall, allowing increased bladder capacity at low pressure. There are medications called "alpha stimulating agents" that help to increase muscle tone in the bladder neck and urethra and increase outlet resistance. Sudafed[R], a commonly used decongestant, is the most frequently used of these medications. While these medications are often used as adjuncts, and may be very helpful for individuals with borderline function, they are often not a sufficient alternative to surgical management.

Using timed voiding

For people with cerebral palsy and spastic quadriplegia, difficulty with mobility and ambulation leads to episodes of incontinence when they are not able to access the toilet in time. The most useful regimen for these people is the use of timed voiding. This allows them to attempt to urinate every three to four hours, before the bladder reaches capacity and empties itself. While the bladder-muscle is mostly an involuntary muscle, the sphincter muscle is a voluntary muscle and, therefore, fatigues before the bladder muscle. While it may be difficult to initiate voiding voluntarily because the sphincter is in spasm, it will usually relax enough to allow the bladder to empty. The technique of supra-pubic tapping, by which the bladder is stimulated by tapping with the fingers on the belly just above the pubic bone 10 or 15 times prior to trying to void, will often be sufficient to fatigue the sphincter and allow urination to start. Bladder augmentation, intermittent catheterization, and urinary undiversion are often unnecessary for people with cerebral palsy.

The bladder extrophy and epispadias complex represents an additional challenge. In this situation, in which the bladder is open to the abdominal wall at birth and the genitals and urethra do not form normally, multiple surgical techniques are often necessary to reconstruct the bladder and outlet resistance. Often, continent urinary diversion represents a preferable alternative.

Keeping an eye toward the future

While we can take significant pride in the progress that we have made, it should be apparent that the present state-of-the-art represents a work in progress. Medicine is, however, a constant effort to do the best we can while recognizing that our knowledge and techniques are limited. Additionally, the essential need for support, encouragement, and enthusiasm on the part of personal caregivers and other healthcare professionals remains at the forefront in helping children with incontinence deal with the issues involved.

For the present, we must use the techniques that are available and not delay them while awaiting future breakthroughs. These surgeries are generally applicable at whatever age the person with incontinence becomes capable of participating in his or her own care, often at about age 9 or 10. The tragedy is not that some children may be incontinent, or that they may require invasive surgeries. The tragedy is that some children suffer with limitations of social interaction, ostracism by their peers, or reduced feelings of self-worth because they either do not have access to treatment or treatment options are not considered when their urinary incontinence can be corrected.

Michael J. Solomon, MD, is a pediatric urologic surgeon practicing in East Brunswick, NJ.
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Author:Solomon, Michael J.
Publication:The Exceptional Parent
Date:Aug 1, 2000
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