[see “Resources” below]. Since chronic irritation from indwelling catheters increases cancer risk, it makes sense to minimize irritation by using a silicon-coated catheter (it’s slicker), or one coated with an antimicrobial to reduce risk of infection.
Mary Thompson, 43, of Del Mar, Calif., is a well-known wheelchair marathoner, having completed 110 marathons. But her athletic life would never have been possible had it not been for a course correction she made a long time ago.
Wheelchair marathoner Mary Thompson owes her athletic lifestyle to the urinary diversion surgery she underwent in 1988.
Injured in 1982, Thompson, C7-8 complete, had an indwelling Foley catheter until 1988. Predictably, her bladder shriveled–causing high pressure, dysreflexia and leakage–and she had “endless UTIs,” so many that her doctor suggested a urinary diversion. “I had an ‘Indiana pouch’ surgery,” she says. “They completely redo your system–like the bladder itself is not really working anymore. It still remains in there, but they use your colon and intestine to build a new one.” After the surgery she continued to have UTIs only slightly less frequently, but the real advantage was a change in lifestyle.
The surgery created a new opening (stoma) in her belly button for intermittent cathing. “You can see it and get to it easily,” says Thompson. “When I had the pouch created it gave me a lot more freedom. I could go places without cathing. Sometimes I can go six hours without cathing, and sexuality–that was definitely better. But I still had UTIs. Until recently, when I’ve had fewer.”
Why did she continue to have UTIs until only recently? “The only way I can account for this is in the last few years I quit road racing. I still do some marathons, but before that I would do up to four marathons a month, so maybe my system was run down. Maybe my body’s immune system was more at risk. I can’t really tell. But the new technique I use is I rub an antibiotic cream on the base of my belly button where you insert the catheter, so it gets rid of some bacteria, and I’ve been doing that just in the last three years, too.”
Thompson married about six years ago, has a master’s in social work and has taken a position as a social worker at Sharp Rehab. “I’m hoping I’ll find my niche,” she says.
Interestingly, Tami Ridley, C5-6, of San Pasqual Valley, Calif., near San Diego, had a similar experience, only her infection-free period came right after her diversion surgery in 1996 and lasted several years, right up until recently, almost a reversal of Thompson’s experience. Still, Ridley is pleased with the outcome of the surgery. “The pouch completely changed my life,” she says. “It gave me a lot of independence, although in the last few years I’ve started to get infections again. But I lead a very demanding, stressful life. I own a restaurant–a wine bar–have a live entertainment venue, I still practice law and have a farm. A whole lot of things going on.”
So why have Ridley’s UTIs returned after years of being relatively free of problems? “Because I get maybe three or four hours of sleep, I have a lot of responsibilities. I’m just run down,” she says. Could she could go back to being infection-free if she took better care of herself? “I think so, yes, I just had a kidney test, which is one of the first things to go, and my function was better than normal.”
The parallels are obvious. Both Thompson and Ridley are happy with the freedom and convenience of their diversion surgeries, and both have had periods of recurring UTIs as well as relative freedom from them. Both attribute their run of UTIs to being run down from overactivity. Thompson’s road racing used to take up most of her time and energy, while Ridley’s responsibilities have escalated since she became owner of Friar’s Folly, her wine bistro, in San Marcos, Calif.
Ridley’s role as bistro owner, besides being time-consuming, carries a built-in risk factor: “My life is centered around wine, and coffee, and if I don’t balance it out very well–if I drink too much wine, too much diet Coke, too much coffee, it’s a problem.”
So what’s the antidote? “Water is good for your bladder,” she laughs, remembering Rule One. And don’t forget Rule Two: Keep your life in balance.
Extreme leaking is another reason for having surgery. In 1993 Robert Mansfield fell from a construction project, sustaining an L1 injury. “I’m one of those really fortunate people who have an incomplete lower injury,” he says. Mansfield is almost a full-time wheeler, but says, “I do walk a little bit with Lofstrand crutches and I do a lot of standing. If I stand–and my bladder’s around 200 cc full, I’ll have a leak.” Absorbent underwater and “manhood pouches” leave a lot to be desired, he says.
Prior to his 1996 surgery, Mansfield had UTIs every two months or so. But the most vexing problem was leakage while he slept. Dr. Wachs recommended bladder augmentation after doing bladder studies. Unlike Thompson and Ridley, who have pouches, Mansfield’s surgery was true bladder augmentation. “About 3 inches above my penis there’s a vertical scar that’s probably four inches long. That’s where he went in. He used a piece of my bowel [to enlarge the bladder]. I was in the hospital about two days.” Now his bladder holds 600-800cc easily and he sleeps all night without getting up to cath. “I’ll get up in the morning and there won’t be any leakage, either, it’s just amazing. Before I would have leakage every night.”
Mansfield, now 49, lives with his wife and two daughters in Fountain Valley, Calif. He likes to fly and belongs to International Wheelchair Aviators. Not only did bladder augmentation solve his leakage problem, it simplified his life: “I don’t have to sleep with a condom catheter, I don’t have to have pads or anything. It used to be a real pain in the ass. I just couldn’t stand the thought of a condom catheter. Too much junk. I want to simplify my life. It was a great benefit.” And he has fewer UTIs.
Even though suprapubic placement, bladder augmentation and creation of “pouches” allow for more lifestyle freedom, better bladder management and fewer UTIs–provided that lifestyle stress and other potential complications are in check–surgery always carries a risk and should only be undertaken as a last resort.
For most people with neurogenic bladder, clean intermittent cathing in combination with overall good health will result in a relatively UTI-free lifestyle. But not everyone gets the same results. Some people will need to switch from clean to sterile technique due to frequent infections. “There are some people … where sterile catheters used every time has reduced their rate of infection,” says Diana Cardenas, SCI researcher and director of the Northwest Regional Spinal Cord Injury System. To get insurance carriers to pay for large numbers of hydrophilic or sterile catheters, a pattern of several UTIs per year must be documented. Cardenas says it’s also a good idea to rule out stones and re-check cathing technique and frequency, water consumption, etc.
What about sepsis? Can’t a UTI spread to the bloodstream and quickly cause a life-threatening situation–septic shock–which some reports indicate was responsible for Christopher Reeve’s death? Dr. Cardenas says there is no reason to fear a runaway infection if you are taking good care of yourself. “Most of the time if you seek medical care you can get treated, and most of the time [sepsis] is not going to do you in,” she says. “When it can do you in is if you’re already in poor health, if you already have poor nutrition, if you already have another problem or maybe a more severe injury.”
Usually, before septic shock sets in, a person with sepsis feels very ill and has a high fever. Seek out a doctor at the first sign of infection and insist upon being seen. Dr. Cardenas cautions that some subjects in one of her studies, however, seemed less aware of developing infection. “They don’t notice that they’re feeling kind of bad, or they don’t notice changes in their spasticity, or maybe they don’t have spasticity, and they don’t notice some of the other signs that other people say they notice, like cloudy urine, strong smell, etc. Some people actually said the first sign they had was they were really sick with a fever.”
Besides staying vigilant and in good overall health, the best defense against sepsis may be to be thoroughly educated about bladder management and infection. Dr. Cardenas did a study where one group of SCI subjects reviewed cathing technique and received education about appropriate bladder volume, appropriate fluid intake and output, things to watch for, and what an infection looks like. “We found that the people who got this simple education process, which also included an exam, actually turned out to do better and have fewer infections and less bacteria in their bladder over the follow-up period than the group that didn’t get that education,” she says.
So there is no silver bullet when it comes to avoiding UTIs. No magical vaccine, no perfect surgery, no absolutely bacteria-proof technique, although some are arguably better than others. What counts in the long run is knowing the basics and consistently sticking with them.
And don’t overdo it. Life is too short as it is.