Why Action Does Not Always Mean Antibiotics

Dr. Jakko Nieuwenhuijzen, Urologist and Professor Dr. Marelise Eekhoff, Internist Endocrinologist, Amsterdam UMC, Amsterdam, The Netherlands

A urinary tract infection (UTI) is defined by the presence of urinary symptoms accompanied by laboratory findings consistent with infection in the urine. UTIs most commonly occur when bacteria enter the urinary system, typically the bladder, and in more severe cases, the kidneys, through the urethra. Once introduced, these microorganisms may lead to localized or systemic infection.

The majority of UTIs are caused by Escherichia coli (E. coli), a bacterium that normally resides in the gastrointestinal tract. Migration of enteric bacteria into the urinary tract represents the most common mechanism of infection, particularly in uncomplicated UTIs.

Symptoms of UTIs include:

1. Frequent and painful voiding (often described as a burning sensation) of small amounts of urine

2. Pain in the lower abdomen

3. Fever or chills

4. Cloudy or foul-smelling urine

5. Visible blood in the urine

Prevention and Management 

Preventive strategies for UTIs emphasize adequate hydration and regular, complete bladder emptying. Hygiene is also essential to prevent the spread of bacteria. Patients with FOP may have difficulty performing hygiene tasks after voiding.

The Ability Toolbox Online Guidebook is a database of adaptive tools, equipment, home modifications, and tips for the FOP community to access as a resource for independent living. Individuals with FOP and their family members and caregivers can use this web page to find tools to promote independence and improved hygiene.

Patients experiencing recurrent UTIs should undergo further evaluation to identify contributing factors. Referral to a urologist may be appropriate to assess for incomplete bladder emptying or structural causes, including bladder or kidney stones.

UTIs and Indwelling Catheters 

Indwelling urinary catheters are frequently used in patients with impaired mobility; however, catheterization significantly alters urinary tract microbiology.

Bacteriuria is extremely common in patients with indwelling catheters, particularly when catheters remain in place for more than several days. Biofilm formation on catheter surfaces allows bacteria to colonize the system, making bacteriuria an expected finding rather than an automatic indication of infection.

Healthcare providers should distinguish catheter-associated bacteriuria from catheter-associated urinary tract infection (CAUTI). Urine cultures should generally be obtained only in the presence of clinical symptoms suggestive of infection. Routine urine cultures in asymptomatic catheterized patients may result in unnecessary antibiotic prescribing and increased antimicrobial resistance. When infection is suspected, best practice includes replacing the catheter before obtaining a urine specimen. Samples should be collected from the sampling port of the newly inserted catheter to reduce contamination and improve diagnostic accuracy.

Special Considerations in FOP 

In individuals with FOP, urinary tract infections warrant particular attention. Focal inflammation associated with infection may increase the risk of triggering disease flare-ups, necessitating timely recognition and appropriate management.

At the same time, this clinical vigilance must be balanced against the risks of over-treatment. Because asymptomatic bacteriuria is common, particularly among catheterized patients, unnecessary antibiotic use should be avoided to minimize antimicrobial resistance and preserve treatment effectiveness. Thoughtful assessment and evidence-based treatment can improve outcomes while reducing unnecessary antibiotic exposure.

You can learn more about this important topic and other aspects of FOP management by reviewing the International Clinical Council's (ICC) FOP Treatment Guidelines.

A Patient Perspective 

I’m Carli Henrotay, 30, living with FOP in St. Louis, Missouri. I was diagnosed with FOP at 5½ years old. 

I have had chronic urinary tract infections since my early teens. They are usually easy to diagnose with a simple urine test run through the doctor’s office or lab. Then they are treated with antibiotics. Since I have them so frequently, I am able to see the signs quickly. For me, there is a distinct smell, cloudy urine, pain or burning, and an urgency or persistent urge to urinate. 

I have numerous ways to try to prevent UTIs, but they are still something I deal with frequently. Over time, I’ve found a few tips that seem to help, including wiping as thoroughly as possible, using antibacterial soap, and taking cranberry supplements or drinking cranberry juice. I also try to urinate frequently and avoid holding my bladder, although that is something I’m really, really bad at. Limiting products, especially those with fragrance, has also made a difference. Most importantly, talking to a doctor can help, as UTIs are often something that can be reduced once you learn your triggers and what works best for your body.

In April 2025, I was hospitalized with sepsis as a result of a UTI. I had had the UTI for about a week and a half, but was in the middle of dealing with multiple infections that I thought were more concerning. I started feeling bad on a Saturday. I was freezing cold (it was cold for an April day), and I have always had trouble regulating my temperature, so I didn’t think much of it until hours later when I was wrapped up in PJs, a sweatshirt, a robe, and a blanket, and was still violently shaking. Billy, my boyfriend, asked me to take my temperature, and sure enough, it was 101.5. My heart rate was also elevated, which is something relatively normal for me. After some Tylenol, the violent shaking stopped, and I was able to go to bed. And then it happened again Sunday morning. And a couple of hours later, it went away. And didn’t happen again until Sunday night. This whole time I thought I had some sort of virus or cold—something harmless. I was emailing my doctors, but of course, saw no reply as it was the weekend. 

By Monday, I still wasn’t better. In fact, I was worse, much worse. I was profusely sweating, had an unquenchable thirst, and was just miserable. I had my mom call my doctor's office to make an appointment, because I physically did not have the energy to talk on the phone. They suggested I go to the emergency room. This could’ve been SO much worse. I waited over 48 hours to be treated for sepsis, a condition that lands many in the ICU. I was lucky this time, and it reinforced that UTIs need to be treated quickly and taken seriously.