Catheter Care with Spina Bifida: Tips from One Family’s Journey
When Luzi was born with spina bifida 18 years ago, her mom Elizabeth left the hospital with a newborn, a handful of catheters, and little guidance. What followed were years of trial, frustration, and constant infections.
The family received 10 catheters per month, leaving Elizabeth with no choice but to rinse and reuse them. “UTIs were out of this world,” she remembers. “Luzi was always sick.” The catheters were long, uncoated, and designed for men, far too large for Luzi’s growing body.
Things only improved when the family gained access to catheters that truly fit Luzi’s needs: single-use, hydrophilic-coated, and in the right size. Infections slowed. Life began to open up. Luzi could cath at school, during sports, or with friends—safely, privately, and without fear.
“Just using the correct catheter has really, really changed our cathing life,” Elizabeth says.
Today, catheterization is simply part of Luzi’s routine. Their journey shows how much the right catheter care can impact daily life for families living with spina bifida.
Why Bladder Care Matters in Spina Bifida
The bladder’s job sounds simple: hold urine until it’s time to let go. But for people with spina bifida, the nerves that control this process often don’t work as they should. Damage to the lower spinal cord can interrupt signals between the brain and bladder, leading to what’s called neurogenic bladder.
Sometimes the bladder contracts too much, too soon, or at the wrong times. Other times it doesn’t contract at all, leaving urine behind. Both patterns raise the risk of UTIs, kidney damage, and a heavy toll on quality of life.
To manage neurogenic bladder, doctors often recommend intermittent catheterization (IC): emptying the bladder on a regular schedule with a catheter. Intermittent cathing has a much lower risk of complications than indwelling catheters, and many people find the process more comfortable and convenient.
For many families, these advantages add up to more than safety. With the right routine, intermittent cathing can support independence, confidence, and a better quality of life.
Practical Tips for Catheter Care with Spina Bifida
It took years for Elizabeth and Luzi to find a cathing routine that worked for their family. Their journey now offers practical guidance for others on the same path.
- Advocate for Supplies
Catheter supplies should fit your life. That means the right type, the right size, and enough to use a new one each time. Early on, the family received far too few catheters, forcing them to wash and reuse them. “Now that I know we’re supposed to get a catheter for every time we cath, I will not accept anything less,” Elizabeth says.
If your supplies aren’t adequate, speak up to your prescribing provider or supplier. Insurance coverage can vary, but persistence matters.
- Find the Right Catheter for You
Not all catheters are alike, and for Elizabeth and Luzi, finding the right one was a turning point. If your catheter doesn’t fit your life—physically or logistically—that’s a reason to speak up. Ask your clinician or supplier about choosing a different catheter. There’s no one-size-fits-all, and you deserve a product that works for your body and your routine.
- Plan Ahead and Keep Supplies Handy
Whether it’s school, practice, or a weekend tournament, Luzi and Elizabeth know life runs smoother when supplies are close at hand. 
Luzi’s catheters are small enough to slip into her pocket, which means she can cath discreetly wherever she is. She also relies on cathing bags in public restrooms where germs are a risk.
Think ahead about where you’re going, how long you’ll be out, and what you’ll need. Keep catheters in your bag, locker, car, or classroom. Pack extras. That preparation goes a long way toward making your day more predictable, comfortable, and independent.
- Be Mindful of Hygiene
Proper hygiene is one of the best ways to reduce infection risk. Elizabeth remembers the early days when they had to wash catheters with baby soap. “It was a complete disaster,” she says.
Now, with hydrophilic-coated catheters and cathing bags, things are safer and simpler. Always wash your hands before and after cathing, follow clean technique, and properly dispose of used supplies. A few extra seconds can go a long way toward keeping you healthy.
- Connect with Others in the Spina Bifida Community
Living with spina bifida can sometimes feel lonely, but you’re not alone. “Just know that you’re not the only one going through this,” Luzi says. Support groups, online communities, and advocacy organizations can offer encouragement and advice. “Reach out to your clinician, your community—whatever community you’re plugged into,” Elizabeth recommends.
- Normalize the Process
At first, catheter care can feel overwhelming. But like most routines, it’s better with practice. “It might seem overwhelming,” Elizabeth says, “but I promise you, it gets easier. It just becomes normal.”
“Just remember that everyone uses the bathroom,” Luzi adds. For some, it just looks different. “And cathing becomes normal through your life the more you do it.”
Take it one catheterization at a time, and remember that each successful experience helps build confidence and independence.
Moving Forward with Catheter Care
Catheter care may never be anyone’s favorite part of life, but with the right supplies and support, it doesn’t have to be overwhelming. Over time, it can settle into your daily routine, creating space for you to move with more comfort and confidence.
About Coloplast
This blog post was sponsored by Coloplast.
Coloplast develops products and services that make life easier for people with intimate healthcare needs. Working closely with the people who use our products, we create solutions that are sensitive to their special needs. Our business includes ostomy care, continence care, wound & tissue repair, interventional urology, and voice & respiratory care.
Elizabeth is the mother of Luzi, a SpeediCath® catheter user, and they have received compensation from Coloplast to share their experience. This article is for educational purposes only. It is not intended as a substitute for professional medical advice or treatment recommendations. Always consult with the healthcare professional who knows your individual history for personal medical advice and diagnosis.
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