Saturday Night and Sunday Morning: A Weekend of UTIs

Saturday Night and Sunday Morning: A Weekend of UTIs

For the last few months, urinary tract infections (UTIs) have been the main subject of this column. My current disease-modifying therapy, Ocrevus (ocrelizumab), has had a significant impact on my multiple sclerosis (MS). The only downside is that Ocrevus attacks B-cells in the body, increasing the risk of UTIs.

Symptoms of a UTI include the constant urge to pee, even when you’ve recently gone, and pain when you do go. The pungent, fishy smell from the urine, while inconvenient, is manageable. The issue is that UTIs complicate MS symptoms. In my case, I lose whatever mobility I have left. Getting out of bed is suddenly a major issue, just as much as getting into bed.

About a month ago, I was woken from a deep sleep with sudden shoulder pain. I had a sneaking suspicion the culprit was yet another UTI. A proper test proved I was right.

This near-constant circle of illness and recovery has me incredibly confused. I’m starting to forget what has happened. The specifics are getting so slippery that I might as well be a Time Lord. (That’s a “Doctor Who” reference for my American readers.)

I finished my course of amoxicillin on Thursday morning. To ensure the antibiotic didn’t interfere with the urine sample, I waited until Friday morning to supply one. I was prescribed nitrofurantoin, which at 250 milligrams is double the amount normally prescribed for a UTI. I took the first dose at 6 p.m. and everything was fine. My shoulder didn’t hurt. I had no symptoms!

At 11 p.m., I erupted.

I peed five times in two hours, and had a clawing need to urinate within seconds of finishing. I self-catheterize, so I usually use Cathejell when I go to the bathroom. This time, however, I was peeing tiny amounts on my own. At least from an environmental point of view, no plastic was employed!

I could hardly move at that point, so my wife put an adult diaper on me. To think we’d assumed that our days of raising children were over!

The symptoms worsened on Saturday. Eventually, we had to phone 111, the National Health Service emergency line. By 4 a.m. on Sunday, an ambulance was taking me to the emergency room. I was peeing every five minutes, which is an incredibly weird feeling for someone who hasn’t relieved himself naturally for eight years.

I was put on ciprofloxacin, a restricted antibiotic that I’ve taken previously for pseudomonas. By 10 a.m. on Sunday, I was starting to recover.

The kicker? I phoned my doctor on Tuesday about the urine sample I supplied on Friday morning. The results were clear: no infection.

No wonder I’m confused.

***

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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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11 comments

  1. Peter says:

    You should rather take D-Mannose to prevent UTI. Every day 2 times 1 mg or once 2 mg. In 95% of cases, UTI is caused by E. Coli bacteria. D-Mannose binds himself to E. Coli and you urinate it out. D-Mannose has no side effects compared to any ATB. There is also a risk, that one day any ATB will stop working completely for you.
    In the past, I used to have UTI 2 times a year, now I use D-Mannose daily, and since then over a year I have no problem.
    I highly recommend this as a prevention of UTI. According to the published study, D-Mannose is more effective in preventing UTI than ATB (85% to 82%).

    • John Connor says:

      Hi Peter Already do! I take every supplement that has any indication of having an effect on MS etc. Well, all that I’ve discovered. Not Cranberry juice re UTIs as the science on that looks to be that it is ineffective. Cheers John

      • Peter says:

        I am very sorry for your problems. I know Cranberry does not work already, but with D-Mannose I am happy for a last year. Every time I had UTI, a lab analysis of my urine had found only E.Coli bacterias. Many years I have taken Tysabri and Gilenya. It looks like there is other bacteria makes UTI in your body.

  2. Anne Lucas says:

    I had numerous UTIs, and became resistant to the nice gentle antibiotics (nitrofurantoin and trimethoprim- can’t take Bactrim dt sulfa allergy).
    The subsequent antibiotics of Augmentin and Keflex both gave me diarrhea, which adds to my risk of UTI, as I have poor bowel control.
    My urology Nurse Practitioner prescribed nightly bladder instllation of Gentamicin via catheter.
    This has worked great so far!
    Takes some getting used to, but now it’s “old hat”- just like cathing is!
    Here’s a reference for you:
    “Gentamicin bladder instillations decrease symptomatic urinary tract infections in neurogenic bladder patients on intermittent catheterization” Cox, He & Cameron, Canadian Urological Association Journal, September 11 2017.

  3. Hi John,
    Sorry to hear about your frequent struggles with UTI’s but happy to see that you haven’t lost your humour! I was wondering if you are still getting positive benefits from Ocrevus? Any benefits that are lasting? (I did read your column about being able to open a packet of crisps and use your right hand for a short while!). I’m considering starting it but not sure if the risks outweigh the benefits.
    I appreciate your thoughts.

    Thanks for your column
    Cheers
    Karen G

    • John Connor says:

      Hi Karen None as effective as the first time I took Ocrevus! I could actually lift my ‘dead’ right leg for a few hours. Miracles territory. Do still feel better for a few hours after the infusion.And happily can go to work next day.
      My neurologist is putting me up for Botox therapy because of this! Also – that’s probably a column….Cheers John

  4. Dot levinson says:

    My husband took the first two half doses of Ocrevus. After the second one he got a very bad UTI and was hospitalized for five days. It affected the MS and he Is still recovering from the exacerbated symptoms a year later. We decided not to continue the treatment. Killing off part of his immune system never appealed to me but his doctor convinced him that it was a good idea.

    Do your homework.

    A loving wife

  5. Beth Williams says:

    I have also been tormented by repeated UTIs over the past 6 months. I think this was a result of having botox although I’ve previously had a reasonably good response to botox.
    I’ve changed my urologist and he put me on high does of antibiotics to get on top of the infection and now I’m taking hiprex and vitamin c ( must have toe two together) and I’m much better. This urologist does not think botox is wise.
    I’ve been on aubagio ( teriflunomide) but am considering Ocrivus as an alternative.
    I think all the drugs for MS are immunosupressants. Not sure if Ocrivus is more so than aubagio.

  6. Kate says:

    I’m glad to hear that lm not the only person having constant UTIs.I self cath every time I go to the loo.I also receive Botox injections every 6/9months.My GP is very good and always sends sample of.But the problem is that I’m becoming resistant to a lot of the antibiotics and don’t know what to do for the best.Have tried DMannos but didn’t work for me.What is this Ocrevus and how does it work.The other problem I have is that my bladder seems to work overtime at night so therefore have to be wrapped up like a baby (not very sexy looking).Tried Noqdima-the result gained 1/2 stone in two days not much fun when your on a diet.Any ideas anybody???

  7. UTIs and I are pals. But by now I can say ms and I are bonded as one. Close to 40 years – since I was 17, ms has been chronically progressing. My tuppence worth? Drink lots of water. I have used macrodantin.
    I loved tea – no more. Herbal tea is fine. Have permanent suprapubic catheter. I could never self cath. In any event it felt like an ill fitting tampon.
    Treat your bladder well. Avoid too much caffeine:
    I could say ms is a no fun disease. It is. My best dream is to put it in a slim tin. Ask him to invite all his pals, close the tin and tie it with a silk ribbon and a big bow, then post it off to … you choose.

  8. Jamila says:

    Hi guys, I was severly plagued for two years. DMannose helped me to manage them and keep them at bay. Then last year i was hospitalised abroad with salmonella. Back home, I was super focussed on rebuilding my gut bacteria etc and as one thing I started taking 6g high strength fish oil (6 capsules). After 3 months any trace of UTI went and has not returned, not even taking DMannose anymore. Can’t find a link anywhere online but maybe give it a go Omega 3 is good for us anyway.All the best

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