Nothing About Us Without Us
Developing Innovative Technologies
For , By and With Disabled Persons

Part Three
OVERCOMING DIFFICULTIES WITH BODY
FUNCTION THAT RESULT FROM DAMAGE
TO THE NEROUS SYSTEM

CHAPTER 25

Life-Saving Innovations in Bladder Management
by Spinal-Cord Injured Persons

Intermittent catheterization

The 2 biggest causes of death in spinal-cord injured persons are pressure sores and urinary tract infections. Most persons lose urine control. They may dribble uncontrollably or be unable to relax the muscles that let urine pass. Specialists mostly agree that often the best way to reduce the frequency and severity of urinary infections is to use intermittent catheterization. That is to say, every 4 hours or so the person puts a thin rubber tube (catheter) through the urine opening (in the penis or vulva) and into the bladder to drain the urine. This is a lot safer than using a catheter that stays in place. A permanent (Foley) catheter, which is normally changed every 2 weeks, runs a higher risk of introducing infection.

Nevertheless, in some countries, doctors caring for spinal-cord injured persons often keep them on a permanent catheter, perhaps because they think that they will not live long in any case. It is very important that spinal-cord injured persons and their families communicate with and learn from one another, and not simply follow what their doctor tells them. Some doctors consistently give good advice; others do not.

Because of a urinary infection, her feet is jerking so much.

As we will discuss in Chapters 27 and 28, spinal-cord injured persons need to learn new ways of listening to their bodies. Because they usually have no feeling or pain below the level of their injury, they must discover other ways to spot difficulties. For example, when a person's legs begin to jerk uncontrollably, or spasticity increases, or she feels feverish, dizzy, or sweaty, these are warning signals. Somewhere, pressure on her skin may be causing a risk of pressure sores. Or a urinary infection may have started. The person learns to watch for these signs and to look for the causes. This new body language can be life-saving. Just as deaf people learn to "listen" in new ways, so do spinal-cord injured persons. There are no better teachers than other spinal-cord injured persons, especially the long-time survivors.

THE STERILIZATION DEBATE. Doctors used to insist that spinal-cord injured persons must sterilize their catheter by boiling it before each use. As a result, users often went long periods without catheterizing. This led to more frequent infections and to kidney damage.

Then, spinal-cord injured persons began to discover that clean catheterization gave results that were as good as sterilized catheterization. Because it was easier, people tended to do it more often and regularly, and so they were healthier. Clean sterilization became an underground art, taught to newly injured persons by survivors.

In the USA, doctors have at last begun to recommend clean rather than sterile catheterization. Not long ago, I was delighted to hear a urinary specialist (urologist) approve clean catheterization technique for a paraplegic boy, explaining, "If you want people to catheterize regularly, you have to encourage the method that is simplest and easiest." Still, international rehabilitation professionals have criticized the book Disabled Village Children for giving "dangerous recommendations" for catheterization without boiling the catheter. The spinal-cord injured community needs to pressure such experts to learn from disabled persons' experience.

148

Using Double Catheters in a Plastic Bag to Reduce Infection

Even a boiled or sterile catheter can introduce infection. This is because there are always bacteria (germs) in and around the urinary opening of the penis or vulva, regardless of how well they are cleaned. More than 25 years ago, after years with frequent infections, Ralf Hotchkiss and other paraplegic friends in California began looking for safer ways to catheterize themselves.

Silicone Tip and Silicone Flange on the top of the plastic bag.

Diagram from the package of the MMG O'Neil Urinary Catheterization System, showing the top of the plastic bag.

One innovation was to keep the catheter in a plastic "zip-look" bag with a bit of antiseptic solution. Hydrogen peroxide works well and is non-irritating. It can be very dilute; a 3-percent solution is fine. To use the catheter, push its tip out of a corner of the bag and into the urinary opening. Make sure the fingers touch only the plastic bag, not the catheter.

Another innovation is to use 2 catheters, one inside the other. The first (outer) catheter is inserted 1 or 2 cm into the urinary opening, past the area with the most germs. Then the inner catheter is inserted through the outer one.

By combining both the above innovations (using double catheters and keeping them in a plastic "zip-lock" bag with antiseptic solution), Ralf has greatly reduced his urinary infections.

THE COMMERCIAL PRODUCT. This combined method proved to give excellent results. It is now factory-produced as the MMG O'Neil Urinary Catheterization System. Unfortunately, it is outrageously expensive. But with a little creativity, people can make their own. Or the commercial system, though sold for a single catheterization, can be used repeatedly for several weeks, like this: