To Have a Persistent UTI or Not? That Is the Question

John Connor avatar

by John Connor |

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If you read last week’s column, you’ll know I’ve just been through hell — which is a pretty big statement for an atheist. Of course, if there is a hell, I’ll be going straight down.

To save you the bother of reading it, here’s a précis: A foot wound led to cellulitis and then 10 days in the hospital.

I’ve also been fighting urinary tract infections (UTIs) for many years. My first column mentioning it was published on Nov. 17, 2017. I’d had a few before, but that date was the start of a consistent run that steadily worsened.

Currently, I haven’t had a UTI for six weeks. You might think this isn’t a big deal, and you’d be right, although it’s a long time for me, especially with my body smashed by illness. Usually, it’s the optimum time frame for the UTI critters to strike again. These critters even have claws so they can continue to cling to the walls of my bladder while I pee every few minutes. It’s most disconcerting for someone who’s had to use a catheter for nearly a decade.

So, given all of this, is it possible that the course of action I outline below may have actually started to work?

In the past, I’ve tried almost everything, including bacteriophages, or phages, which are viruses that attack bacteria. They worked for a bit, but I have a complex sheen of various bacteria covering my bladder.

Internet research then led me to the world of biofilms. If memory serves, medical scientists mused that if rocks in a fast-running stream could build up slippery surfaces made up of microbes, why couldn’t the same thing happen to parts of the body, such as the bladder? (Hurrah, I found the link.)

A perceptive MS nurse gave me the name of a consultant she knew who dealt with such things. I tracked him down to a North London hospital. (I live in South London.) Unfortunately, he’d since moved on, but someone else who’d worked with him on his scientific papers was still there. But getting in to see that person, who is a urologist, took a lot of determination, especially in the middle of a pandemic.

Firstly, my own doctor could no longer directly refer me. Instead, a local urologist had to. That was an icy call that entailed talk of phages, biofilms, and persistent UTIs in many classes of patients with low immune systems. The urologist appeared to respond as if I were talking a bit of rubbish, but I included enough medical gibberish to make a counterargument pointless. I was duly referred to the new urologist at the North London hospital.

But then I received a letter from the urology team at the North London hospital stating that I should call them if I hadn’t heard from them by a certain date. I did so, but got the voice messaging system. I left several messages, but nothing!

I’m not a wilting flower in such circumstances. I decided to go through the main switchboard and ask for urology. I knew it was an obvious tactic, but I thought it might work. Voicemail again.

I decided to ask for administration, thinking at least I’d get to talk to a human being. Nope — their impersonation of a brick wall was perfect. I was stymied.

At that point, the secretaries at my local doctor’s office offered to have a go. They seemed to take it upon themselves as if it were a personal affront that insulted their honor. Subsequently, they spent two days working through the spurious bureaucracy thrown at them.

Eventually, they triumphed. I could tell they had done so when they phoned me expressing unabashed pride. And rightfully so! This all happened many months ago, but I’m pretty sure I sent them a large box of chocolates and a heartfelt thank-you card.

I finally got to talk to my new urologist. She claims it can take up to nine months for her recommended treatment of extra nitrofurantoin and Hiprex (methenamine hippurate) to work. So far, I’ve been taking them for only five months.

For this treatment, she tends to send patients a five-page explainer about what’s actually going on in our bladders. Unfortunately, the boosted medication regimen is not found in the official prescribing guidelines set by the U.K.’s National Health Service, or NHS.

I also don’t know how many urologists within the NHS currently work in the area of long-term UTIs, but it feels like there are precious few compared to the sheer numbers of patients who need help. I only found my new urologist in London.

And if you think that six weeks to be UTI-free is no time at all, you would be correct. But as I wrote earlier, a UTI would normally jump at the chance to get stuck in me while my own slippery rocks were at rock bottom!

Writing about it might even be risky, but I’ve been careful not to read this copy out loud. I’ve learned that these UTI gremlins have preternatural abilities.

I’m not about to stop the treatment, though. My plan is to bombard these suckers while they’re down. This is the first time they haven’t overwhelmed me like they usually do.

I may not be fully cured yet, but in the last three years, this is the first time I’ve seen a glimmer of photons in my long and arduous tunnel. Maybe the train is finally climbing toward broad, green, sunlit uplands.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Kristin avatar


After a year and 1/2 of chronic UTIs, I was put on high-dose nitrofurantoin by my urologist. He told me it would take 45 days to enable my bladder to rebuild its defenses. I was actually on the drug for over a year and 1/2. It has (knock wood) been smooth sailing ever since. I do occasionally take a nitrofurantoin anytime I have been at risk, e.g. after the messier variety of accident. It's been a wonder drug for me.

J avatar


I have been on a regiment of methenamine for over10 yrs. No adverse reactions I take 2 doses daily. It’s my personal weapon. Morning and evening. I have had the occasional UTI, never had one until diagnosed,, hospitalization once. I now know overindulging with my diet and sugar are the main triggers/ culprits for me that even methenamine has a hard time fighting. Also not voiding Think living life. I’d often assumed it’s hygiene with UTI but actually that is most likely not the case. My urologist is in his late 70’s. He proposed this treatment after my first few UTI encounters early in my disease. This is an old tried but true treatment for peeps who cath , like myself sometimes 5x daily. It’s low dose but does exactly what it should. Keeps unwanted circulating bacteria at bay. Like MS you personally have to find your lane and skate it.

Jacqueline Murphy avatar

Jacqueline Murphy

I am amazed that John can write with such candor and humor about his numerous MS problems. I have many symptoms but cannot compare to what he and others like him deal with on a daily basis. I am in awe of your strength and resolve.


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