Bladder care is self-care!

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Over the past year, I became surprised how many pwMS consider their overactive or neurogenic bladder symptoms as ‘normal’, ‘part of the disease’ or ‘something you have to learn to live with’. I spent many hours explaining pwMS that this is not the case, that these symptoms are, at least partially, treatable, and that treating these symptoms is often more impactful on pwMS’s quality of life in the short term than starting a disease-modifying treatment (DMT) which will mainly impact in the long term. The nasty thing about neurogenic bladder symptoms is that they remind people every day about their underlying condition, can potentially be embarrassing and therefore notoriously stressful. Many pwMS minimise the impact of these kind of symptoms on their daily life. However, there is no reason to beat about the bush: having to go to the loo every hour or even more is horrendous, no matter whether you work from home or have an understanding work environment. It kills your concentration, is a continuous source of distraction and triggers social isolation. Unfortunately, bladder symptoms originate from spinal cord damage and no DMT focused at controlling MS will undo this. Once you are experiencing these symptoms, they are likely to stay. Therefore, the only solution is to acknowledge it’s annoying and stressful, bring it up during a clinic visit with your consultant neurologist or MS specialist nurse and carefully consider the options that are offered.

https://www.shrm.org/resourcesandtools/legal-and-compliance/state-and-local-updates/pages/california-equal-restroom-access-act.aspx

The question you need to ask your self now is: do I have neurogenic bladder symptoms that are worth mentioning to my consultant/MS nurse? To make sure we are on the same page, these are the symptoms you can expect:

  • Hesitancy: When you try and pass urine and nothing happens. These pwMS have to wait for the bladder to open which can be very frustrating and time-consuming. 
  • Frequency: The need to go to the toilet many times during the day and night. The average ‘healthy’ frequency is usually between six and seven times in a 24-hour period.
  • Urgency: The need to get to the toilet as quickly as possible to prevent yourself from being incontinent. 
  • Nocturia: The need to go to the toilet at night which is often a source of insomnia. 
  • Dribbling: Involuntary loss of urine immediately after you urinated. 
  • Incontinence: Losing urine at an inappropriate time, often requiring pwMS to wear costly pads. 
  • Recurrent bladder infections. 

There are many treatment strategies to tackle a dysfunctional bladder. Admittedly, finding the right treatment for your bladder is a trial and error process, and most often we do not get it right from the beginning but persistence gets rewarded. In short, I have listed the different treatment options for pwMS:

  1. Lifestyle measures 

First, consider to stop smoking as nicotine is known to irritate the bladder. Second, reduce alcohol and coffee consumption as both of them affect the kidneys and have them make more urine. Third, bladder retraining has shown to be effective, and involves pwMS voluntarily ‘holding on’, or refraining from voiding with a fairly full bladder for increasingly longer periods of time. In a prospective trial, one month of bladder exercise increased the strength of the pelvic floor and bladder capacity with 20%. Furthermore, the number or times pwMS had to frequent restrooms decreased with 40%, and the number of episodes of incontinence reduced with 86%. 

  1. Medical treatment

There are four different types of tablets that can be used to treat neurogenic bladder symptoms. First, there are anticholinergics, for example oxybutinin, solifenacin (Vesicare) or tolterodine. When using solifenacin, the effect is apparent after using the drug for one week and stabilised after a period of 12 weeks. Hence, 12 weeks is the minimal period you need to try the drug before you know with certainty that it works for you or not. After 12 weeks of treatment with solifenacin in an open-label study, about 50% of people with an overactive bladder became ‘incontinence free’ and about 35% had to urinate less than 8 times per day. The commonest side-effect of anticholinergics is dryness of the mouth and they can make constipation worse. The older generation of anticholinergics (e.g. oxybutinine) are also known to exacerbate cognitive problems, especially if an individual already has cognitive problems because of MS.  Second, there is mirabegron (Betmiga) which works by activating the β3-adrenergic receptor in the detrusor muscle of the bladder. In the pivotal clinical trial, mirabegron reduced the number of severe episodes of urgency at least with half. Third, there is a hormone called DDAVP that works on the kidney to reduce it making urine. This is especially useful when pwMS have disabling nocturia. Fourth, we use alpha-blockers (prazosin, tamsulosin and terazosin) for pwMS that exhibit pronounced hesitancy. 

  1. Intermittent self-catherisation (ISC)

The residual volume is the amount of urine left behind in the bladder after you have emptied your bladder, and this is a source of recurrent UTIs as germs have the time to grow wild and freely. If the residual volume is greater than 80-100mL you may need to consider intermittent self-catheterisation or ISC. This procedure involves you passing a plastic tube, called a catheter, down the urethra (the channel you normally urinate down) and into the bladder. The big advantage of this technique is that it allows you to empty your bladder completely at a time that is convenient for you which can be life-changing. It needs to be done at least once every four hours. For some pwMS, ISC is not an option because of upper limb disabilities making it impossible to perform the ISC themselves. 

  1. Intravesical botox infiltrations

Intravesical botox infiltrations paralyse the detrusor bladder muscle turning it into a flaccid bag for urine storage, and literally gets rid of the problem of urgency and frequency. Almost all pwMS who have detrusor botox are using ISC. The botox infiltrations need to be repeated every 6-8 months in hospital. This implied many pwMS unfortunately missed out on this procedure during the recent lockdowns. 

  1. Suprapubic cathether

If all other strategies fail some pwMS may need to be permanently catheterised. This can be done via the urethra or the lower abdominal wall which we call a suprapubic catheter. 

In summary, there is no such thing as 100% efficacy when it comes to bladder management. Nonetheless, all these strategies have the potential to make a meaningful impact, and are a crucial step in setting pwMS free mentally and physically. It is a mutual responsibility of the MS team and pwMS to bring this up during a clinic visit, set out a treatment strategy and make it happen because bladder care is self-care!

Twitter: @SmetsIde

Disclaimer: Please note that the opinions expressed here are those of Ide Smets and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.

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Ide Smets

27 comments

  • Hi Ide
    Great post – bladder symptoms are so important to recognise and treat well. Percutaneous or transcutaneous tibial nerve stimulation for overactive bladder symptoms is also an option for those refractory to medication

  • It took a referral to uro-neurology before I was made aware that amitriptyline could cause symptoms. Stopping that has all but cured them. Managing my mental health without drugs is proving a whole lot easier than putting up with bladder symptoms.

  • Urgency, (with subsequent hesitancy when I got to the loo) and water retention were my issues. I started to deal with them in 2013 after my wife very bluntly pointed out that something had to be done. A mention to my MS team and a referral to the urology team, and Oxybutynin was the start of my pee-wee journey – Oxybutynin was a help but not a solution. I still needed to be mindful of where public loos where on my journey, I had to make sure that I ‘went’ before I went, and I carried a pee jar in the car just in case – not ideal but better than turning up for a business meeting with soaked trousers! As my mobility was becoming an issue back then, night-time toilet trips were solved with wearing a convene connected to a 2 litre night bag to collect the urine.

    2019 was the year that changed it all – the retention caused 3 virtually back to back Urinary Tract Infections, (UTI’s). All required hospitalisation of between 7-14 days for treatment with intravenous antibiotics, with the last requiring a blue-light, ambulance admission as the UTI had turned into Sepsis! No fun.

    A further trip to the Urologist and more bladder scans followed. It turned out that when my MS brain told me that I’d passed all the urine in my bladder, I was retaining a swimming pool sized reservoir of 250ml-300ml that was becoming more and more infectious every day. The solution was easy – I had to start a regime of ISC 3 times daily, with a prescribed rescue pack of a 7 day course of antibiotics to constantly keep at home, to use as needed. I’ve used it once in 2 years BUT there have been no further UTI’s or hospitalisations. And, contrary to ‘folklore’, feeding a straw up your willy and into your bladder doesn’t hurt.

    Going out for days is now also toilet-stress free thanks to wearing a convene and a connected 500ml leg bag to collect the urine. I’ve also flown with it so happy days are here again. I know that if/when it gets worse it’s probably a suprapubic catheter for me, but so what.

    Sorry for the long post, but blokes are generally unwilling to talk about toilet issues, and this needs to be said.

    • Thank you for sharing! And it’s is also my impression that pwMS, both sexes, are very reluctant to try ISC but once they go ISC and experience the social and health benefits, they never want to go without anymore!

  • Hi Ide,

    Been there, got the T-short and seen most of the film. Now on ISC and Botox, seems to be working well and preferable to an indwelling catheter via the urethra

  • Could you please share your thoughts about hiprex please.
    My main problem was nocturia but prophylactics cephalexin seems to have sorted it but it has been suggested I try and replace these antibiotics with hiprex. When I tried hiprex before it seems to to make my urine acidic and irritate me

    • I have no experience with hiprex, but as far as I can deduct it’s an antibiotic which is used for recurrent UTIs rather than nocturia.

  • Hi Ide, good to read your post & even better for all you folk that have shared your journeys & concerns. I’m continually getting UTIs & have tried Hiprex (with vit C) & although this was supposed to replace Nitrofurantoin, it didn’t seem to work as well. I felt like I had been ‘disinfected’ & when you came to pass urine – I could feel the drug reacting as it passed (slight sting but not too unpleasant). I was advised by my Urologist to not take Nitrofurantoin long-term (daily) as it could potentially create a lung problem! I now trying to request from my GP – that I have an emergency stash of the drug and only take it when I have another UTI (my own knowledge of what the symptoms are and how I feel). I in negotiations with my GP in order to do this – so wish me luck! I was also advised HRT (as I’m of a certain wonderful age!) but taken internally through my lady bits :0) Well, I’ll try anything… It could be my MS, treatment therapy (immune suppressed) or my age, so it is a bit of trial and error and I wish you had an MS Urologist as part and parcel of your MS team. Access to such a person for advice, support and discussions how and why I keep get infected (I know the facts – just need reassurance) would be helpful and one of my wishes.

    All the best and lets keep talking…

    • If you keep getting UTIs, you should sincerely consider ISC. Potentially you won’t even need long-term antibiotics anymore. You can discuss this with the community bowel and bladder service, and do not need a referral to neuro-urology.

  • Personally, with my ~20 years PPMS, D-mannose is amazing, all I need. But as it has zero side effects, it’s not taken seriously enough to be made available on prescription??

  • What about bladder pacemakers? My visit to the neuro-urology department ended with the recommendation to get one of those.

    • They can be useful in certain cases, and are mostly tried if other strategies fail. But this is very specialist and should best be discussed with a neuro-urologist.

  • Idd, I miss an important treatment: PTNS (Percutaneous Tibial Nerve Stimulation).

    My urologist prefers it before the start of medication or more invasive option. Took away the urgency problems for some years. Works really good. Can be done by a specialized urology nurse, can also be done with a simple device you buy online. Device is like 80 euro’s. Unfortunately the ms made problems worst, so I had to add Betmiga and toldiridone to get the urgency feeling down. Pens should really be on your list!

    • Thanks for the comment. I did not know it was so easily available, and haven’t come across pwMS actually using it, but definitely will explore how and when to recommend it.

  • I have bladder urgency and incontinence that I was prescribed a pill for that has worked ok. I also have bowel incontinence when jogging. Is it related? Is there anything I can do? I love jogging and changing diet is not working. Thanks!

    • Bowel enema could be a solution. Best to discuss with your MS nurse or bowel and bladder service.

  • Thank you. That is such good information, spelling out the different bladder difficulties and solutions. Well done.

  • Each of these remedies sounds worse than the problem
    I’ll carry on with daily D-Mannose along and will continue drinking lots of water (to avoid the stagnant pool that breeds germs)

  • I started to get frequent UTIs.
    I had an ultra sound that showed residual urine but after I tried again to empty my bladder it was ok.
    So I have to wait maybe 15 secs after the first pee and then squeeze my abdominal and pelvic muscles tight and usually there is more urine, often quite a lot.
    Since I have been double voiding I have only had 1 UTI in 3 years which is great. Also have emergency nitrofurantoin at home and take high dose cranberry tablets.

  • The following is with all due respect to Ms Smets, and her medical points are all well taken as are the comments. But…

    I have a somewhat different perspective. I see things though the eyes of a psychologist with a 30+ year history of MS. The “pee problem”, in my opinion, activates some of the earliest patterns of life “resolutions” that we have. That is, as a young child, you had a severe problem (we all had this problem and many, many others like it, too), and we learned to solve it with all of our childhood skill. As a kid of say 3, 4, 5, 6 or 7, one of the most important tasks of your life was managing your “pee system”. If you didn’t have that managed by 6 0r 7, you were in all likelihood ridiculed and shunned. Now, you have to deal with the same damn problem again and how are you going to deal with it now? Are you still afraid of the same embarrassment and shame? I suppose you should be, but just don’t do it to yourself.

    So that’s the first issue to be resolved with “pee problems”. How do you feel about not controlling your pee like you used to? Are you willing to go to any extreme to take care of that problem? Is it a HUGE problem or a minor problem?

    The solution as I see it, is simple. Wear a damn diaper. Actually, they are cheap if you buy them in bulk on Amazon. You can even buy seconds (open packages), so they are less than half a buck (US $) each. Try not to use it and keep your bladder exercised. I end up using one or two a week in unforeseen circumstances. You can get three pees in a diaper. Costs me about a buck. I don’t wear them at home or at night. I do try to think about where I’m going and where the baths are, etc., because I don’t enjoy using them or wearing a used one. But compare that to catheterization. I tried meds, but didn’t like the feeling, and now I suppose, I just don’t want to take another med. I generally run with 100-200 ml un-emptied urine. But guess what- no bladder infections! (20 years). Two thoughts on this- 1) infections come from bacteria so stay away from bacteria, and 2) as soon as a normal person empties their bladder it starts to immediately fill again. Why aren’t non-MS people having bladder infections all over the place? Aren’t they susceptible to the same difficulties? So I don’t buy that holding extra urine brings about more infection. Bacteria (only) brings about infection. And change your damn underwear or diaper. I wish I had worn them early on when I was trying to manage MS perceptions at work. Instead, all I did was worry about it and try to not let accidents happen when it was happening. Life would have been so much easier wearing a damn diaper.

    Newsflash- If you are newly diagnosed, you in all likelihood are going to face this issue (over and over), sooner or later, that you have to pee and you can not wait a moment longer, no matter where you are. Make your plans now. You are forewarned.

    • Fresh urine does not have pathogenic bugs in it so even though the bladder starts filling immediately if you can regularly clear your urine there are no bugs.
      However always having a residual of a few hundreds mls leaves a stagnant pool of urine.
      Avoiding bacteria is difficult esp for women with a shorter urethra and lots of bugs lurking around the perineum however clean and careful you are. And then there’s sex!

      • Didn’t want to come off sounding like we are all the same and I know everything about women (God knows I don’t!). I should have thought more about physical sex differences or made a “disclaimer”. I think “stagnant” is too strong of a word, however, because you really aren’t. The urine is always being added to and exchanged. Even a healthy person never gets 100% refreshed, I don’t think. Otherwise the cure would be to just “pee away” UTIs if your bladder was operational.. It kind of reminds me of recently having my automatic transmission fluid changed in the car. Getting a total flush and clean out is needed for a 100% change. Most people go with letting gravity empty the fluid and refilling it (because it is cheaper), amounting to an actual exchange of something like 70%. As far as the childhood stuff, I still think the emotional component of what is going on is often quite powerful. No one wants to sit next to a 5 year old with wet pants, male or female. And no 5 year old wants to be made fun of and rejected.

      • Sue- And also as you say, concentrating and squeezing your pelvic muscles for a second go of it helps. I have found very helpful, pushing in towards my bladder with my fingers (just below my waist) stimulates it to further empty. An emptier bladder results in all sorts of good stuff!

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