The Long and Winding Road to My Urologist’s Door

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by John Connor |

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Last week’s column, “The Loneliness of the Long-distance UTI Patient,” dealt with my dive into the Eastern (bloc) world of bacteriophages. It would be a fun exercise (and boy, do I need some exercise) to dive into the history of the discovery of bacteriophages and antibiotics. Both fight bacteria and seem to have their roots in the late 19th century.

I was following a Hail Mary strategy. But instead of one last pass, I was cheating and chucking balls all over the end zone. (If I’ve made a mistake in this analogy, it’s because I’m British, and I’d be kicking a real round football. No, we don’t call it a soccer ball.)

OK, in my present condition, that would go about 2 feet. But emails go everywhere, and you can do loads of basic research on the information superhighway. Back of the internet! (That’s a soccer/footie pun for you American footballers.)

I had just about given up on Western medicine to deal with my persistent urinary tract infections. In the past, doctors threw every urology test they had at me. They found nothing wrong. Except something was really, really wrong!

Every few months or so, a UTI would scythe through me. At first, I played ball (the round one). I’d plead for antibiotics from my local doctor. They wanted a sample to dip! During this faffing about, the UTI would get worse. Sometimes, I’d end up in the hospital. Or, in those far-off walking days, the weakness engendered by a UTI would make me fall over. So, I joined in and got my own dippers — no, not from McDonald’s. Then, I sent my doctors pictures of my do-it-yourself dip tests.

This worked until new research discussed in 2018 in The Guardian revealed that dip tests of urine were effectively useless. I leapt on this. My urine needed to be tested in a lab. I found it rather strange to constantly email new research to my doctors, but I needed to get used to it. I was entering into the strange new world of cutting-edge medicine.

I started my new disease-modifying therapy (DMT), Ocrevus (ocrelizumab), in December 2018, and it was wonderful at first. However, on top of my previous DMT, Lemtrada (alemtuzumab), it was stripping my immune system. Whatever biofilm I had amassed went from black and white to full-blown technicolor. Hence resorting to phage therapy for E. coli, which certainly quietened the beast.

My local doctors simultaneously put me on a new antibiotic, nitrofurantoin. I took a 100 mg, long-release tablet once a day as a prophylactic. This would fight the other bugs that had shown up in my urine samples: Enterococcus faecalis and Citrobacter freundii. Interestingly, the E. coli never did in the U.K. The antibiotic was prescribed while I was waiting for my new urologist.

This is all getting a bit dry for a wet subject, but here goes.

I may well have been saved by many people. My urology nurse at the local hospital knew of a urologist who worked in the specialized area of long-term UTIs. She had a name. I tracked it down and got my doctors to refer me. That was easy. Then, that “thing” happened. The referral was going nowhere. There was no answer for a lowly patient. The stone wall was made of granite!

I talked to the administrative assistants at my local doctor’s practice. After two days, they discovered that in this new world, a general practitioner could no longer refer a patient out of their area. So, I was referred to a local urologist. That was a frosty call, but I kept banging on about biofilms, quorum sensing, and phages. I was not about to back down. She didn’t have the time, and I had eons! She referred me.

I got a call from my new urologist a couple weeks ago. She knows far more than I do about all of this, and it was a joy to sit and listen. It was even more of a joy to learn new things. It can take nine months to deal with a persistent UTI, and my local doctors had put me on the correct antibiotic.

My medication regimen changed immediately. My dose increased to two nitrofurantoin per day. When a flare happens, I take three. She was happily surprised I was already taking Hiprex (methenamine hippurate), thanks to my urology nurse.

My biofilm must have heard us talking about it — I was on speakerphone! I had a flare that night. The flare wasn’t used to being put out so easily.



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.


Jane avatar


John, you’re an inspiration! Keep going on the information superhighway and knocking down the walls.


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