After years of relative ease with a suprapubic catheter, two years ago I emailed my urologist to ask about a curious new sediment that was blocking my catheter and causing incontinence. “It’s different from anything I’ve seen in 24 years,” I wrote, “more formed … like a gluey cheese stick with tendrils.” My attendant said it looked like my bladder had been invaded by white worms. We both knew they weren’t actual worms and they weren’t actually alive, but joking about sentient white worms taking over made the depressing situation a little more manageable.

My quest to banish these white worms ended up taking almost two years, during which I went through four urologists, one ER stay, three different antibiotics — and more courses of those antibiotics than I’ve taken in the previous decade — plus enough loads of urine-soaked laundry to nearly fry my washing machine.

The quest tested my faith in medicine and my sanity both, and gave me a deeper appreciation of how critical are creative problem-solving and persistence for those of us facing complex medical issues. While specific remedies that eventually resolved the issue won’t work for everyone, I am confident the steps I took and lessons I learned can help others avoid some of the hell I went through.

A Fraught Relationship

It’s hard to pinpoint the exact origins of my skepticism in urologists’ ability to accurately treat those of us with neurological bladders. Maybe it was the cocksure urologist who all but ordered me not to get a suprapubic catheter in the wake of my SCI. Maybe it was the clumsy urologist who left a 12-inch drainage tube in my abdomen after surgery. Or maybe there was a point where I’d simply had enough of explaining what dysreflexia is and why they needed to be careful even though I can’t feel down there.

I’ve hired, fired and rehired more urologists than I can keep track of. While there have been a few competent ones, the totality of my experiences, coupled with conversations with countless other disabled friends, have led me to a sad but important realization: Most urologists have no idea what to do with us.

Don’t get me wrong, anyone who graduates from medical school can prescribe some Ditropan for bladder spasms, order an annual KUB X-ray and cystoscopy, and tell you your urine culture came back positive and that you need antibiotics.

Unfortunately, more than any other body part, the bladder relishes defying simple treatment. Problem-solving the neurogenic bladder requires intrepid explorers, willing to go where most urologists have never gone, and to persist when most sane people would give up.

Failed Tests, No Answers

I started to question my sanity after two successive urine cultures came back showing no treatable bacterial infection. The sediment-like worms were right there, visible to the naked eye. I was sure whatever was growing was the result of some new bug that had taken a liking to my healthy bladder.

With no obvious culprit, my urologist went through the routine — cystoscopy, KUB, ultrasound, etc. — but turned up nothing. When he stopped responding to my increasingly frustrated calls, I found a new urologist.

On the recommendation of a fellow quad, I switched to another urologist. His staff’s professionalism was a breath of fresh air and his response to seeing the white sludge gave me hope. “I’ve never seen sediment like that,” he said. “But we’ll figure this out.” He ordered the same tests, but I was hopeful because he seemed genuinely committed to working with me and we started a lively email correspondence.

A couple of weeks before our follow-up visit I received an email that the hospital was closing his clinic due to budget shortfalls and he would no longer be practicing locally. Back to square one, I sought another new urologist. None of my wheelchair-using friends had anyone to recommend, so I scoured the webpages of every local urologist for any experience with neurological bladders, eventually settling on two who had been recommended by another doctor I trusted.

The Invasion Grows

While all of this was going on, the worms were building a full-fledged colony in my bladder. Apart from the rapidly thickening mucous, however, I felt fine and showed no obvious symptoms of an infection. Prior to the worms’ arrival, I had never regularly flushed my catheter. Thanks to drinking copious amounts of water — usually 4-5 liters a day — I had stayed infection-free for years and avoided antibiotics. Why mess with what works?

By month two of the worms, not only was I regularly flushing the catheter with distilled water, but I had established an elaborate system to keep the syringes that I used sterile. Regular flushing became such a necessity that the “clean” and “dirty” trays where I kept my syringe rotation occupied a prominent spot at my bedside. Even with flushing, the sediment would eventually clog the catheters, forcing me to change them more and more frequently. Despite my best efforts to be sanitary, the frequent interruptions caught up to me. I woke up shaking with 103° fever and headed to the ER.

Previous trips to the ER for UTIs had taken away any illusions I’d had of a House-like doctor finding a miracle cure. But still I held out hope that a more thorough battery of tests would reveal some way to attack the worms and restore my health. The tests suggested my infection would respond to Bactrim, a strong antibiotic, and three days later I left with a clean catheter, no fever and a sense of hope.

I couldn’t remember the last time I could see through my silicon catheter. For a month or so, I crossed my quad fingers and watched the clear catheter religiously. Just as I was regaining the confidence to be out and about, the sediment started returning. Soon the worms were back and more problematic than ever.

Trying Anything & Everything

Though not unexpected, the return of the worms left me depressed and desperate. After disappointing meetings with both prospective urologists, I went back to my original one. We had a frank talk about communication, where he promised better response times and more urgency. Additionally, he proposed some new tactics, including referrals to an infectious disease specialist and a kidney doctor.

Referrals often strike me as passing the buck, but I was hungry for any new ideas. I tried upsizing catheters from a 22 FR to a 24 FR, but quickly abandoned that when it only produced bigger worms. I tried using silastic-coated catheters, supposedly designed to prevent sediment buildup, but found them ineffective. I talked with SCI-focused urologists around the country, and considered different irrigating fluids.

A quad friend recommended flushing with a mix of vinegar and distilled water but it had no effect for me. Another wheelchair user raved about finding relief with Renacidin, an acidic solution designed to break up sediment. My doctor agreed to prescribe it, but at over $200 a bottle and no insurance coverage, I never got a chance to try it. I even spoke with a researcher conducting a study on the effectiveness of irrigating with probiotics.

As I was trying all these solutions, I was growing increasingly reliant on antibiotics to maintain any quality of life. A second weeklong course of Bactrim brought me another problem-free month, but my urologist worried that in addition to building resistance, the more regular usage could damage my kidneys.

We tried a weeklong course of nitrofurantoin and then a lower, daily dose of another antibiotic, trimethoprim. Sadly, neither affected the worms. A few weeks later I started another round of Bactrim. For all my quad life, to avoid developing resistance, I have avoided antibiotics except when desperately needed. But now it was the only thing keeping the worms at bay.

Desperation Sets In

In over 20 emails to my urologist, my desperation is evident. “My catheter is being incredibly problematic, with rapid forming sediment and the tube not working, causing incontinence,” I wrote. “It’s driving me crazy and making my life very difficult.” I bombarded him with possible causes and solutions I’d come up with after countless hours lying awake in bed and surfing the internet.

My most elaborate theory revolved around the coincidence that the worms had appeared about the same time I’d started taking milk of magnesia after getting a colostomy. The worms were white, the milk of magnesia was white: Maybe a surplus of magnesia was reacting with the bacteria in my bladder to create crazy new life-forms? My urologist was skeptical, but worked with me as I swapped laxatives to test the theory. It failed.   

From the first time the worms appeared, getting rid of them seemed like it should be as simple as analyzing one of the sediment strands, determining what it was made of, and prescribing something — either a medicine or course of action — to eliminate them. I pitched this to every urologist I saw, and every one said they didn’t have the ability to do so. They told me they could culture the urine sample, but not the sediment itself. This was of little good when every sample came back “contaminated” or with too many bacteria to read.

The first doctor who seemed receptive to my idea was the infectious disease specialist. She ordered another urine culture but gave me specific collection instructions. “Stop any antibiotics for at least 24 hours and change the catheter when you are well-to-over-hydrated. Let the catheter flow for 5-10 minutes after the change to let any blood or lube from the change flow through, then collect a FULL sample in a sterile container (provided by urologist). Take this to the lab immediately and request that if the urine culture is deemed a contaminant they should subplate the various bacterial colonies for identification and antibiotic sensitivity testing.”

Thanks to the countless cultures I had taken in during my worm invasion, I considered myself an expert on collecting samples. I doubted that this culture would reveal anything its predecessors hadn’t, but I followed her instructions to a T. That was the last time I saw the worms.

A Clear Start

In what seemed a miracle at the time, the culture came back showing a specific bacterium, Klebsiella pneumoniae. Klebsiella pneumoniae is a multidrug-resistant, gram-negative bug that produces urease, which can cause stones. My urologist didn’t think the levels were high enough to cause the worms, but after months of failing to even identify a culprit, I wasn’t about to ignore this evidence. I insisted on trying a targeted antibiotic and he prescribed one I’d taken many times before, ciprofloxacin.

I found myself checking the catheter whenever I could, but to my surprise it stayed clear. Once I allowed myself to believe I had truly snuffed the infection, I started to remember what it was like living without fear of accidents or emergency catheter changes.

By my estimate, I went through more catheters during the 18-month worm invasion than in the previous five years combined. Besides the catheters, the toll of the infection is harder to quantify. The ordeal tested my faith in my ability to manage my own body, and cost me hundreds if not thousands of hours of productivity and happiness, plus a ton of money. I worry that the multiple courses of antibiotics could have taken a hidden toll. And while giving up on my quest never seemed a viable option, there were times when failure felt inevitable.

Finally, my experiences stripped me of any faith I had in the expertise of urologists. It’s been replaced with a growing confidence that we are the only true experts in our bodies. The trick is figuring out how to work with doctors to get the services we need. It is exhausting, frustrating, infuriating — you name it — but sadly it’s the reality of our medical system. The next time my bladder is invaded by an alien bug, or some other mystery illness knocks me down, I have no doubt that what I’ve learned from this experience will make it more manageable.

My attendant said it looked like my bladder had been invaded by white worms. We both knew they weren’t actual worms and they weren’t actually alive, but joking about sentient white worms taking over made the depressing situation a little more manageable.