Clinic speak: intermittent self-catheterisation and quality of life

Are you an ISCer? What impact does bladder dysfunction have on your life? #ClinicSpeak #MSResearch #MSBlog

“Urinary tract infections (UTIs) are the most common reason for MSers to be admitted to hospital. Hospitalisation, however, is only the tip of the iceberg when it comes to UTIs. Bladder involvement in MS is a poor prognostic variable and indicates that MS has affected the long neuronal pathways in the spinal cord. In my experience MSers with bladder involvement do worse than MSers without bladder involvement.Why? Recurrent UTIs result in activation of the innate immune system and may speed up disability progression, or worsening. UTI’s are also a potent trigger of relapses and can exacerbate temperature sensitive symptoms, for example spasticity and fatigue.”

“Recurrent UTIs also impact on quality of life; they cause loss of work days and increase healthcare utilization (more visits to your doctor, more urine and blood tests and antibiotics). UTIs can spread to the kidneys and the whole body causing septicaemia; septicaemia is one of the causes of mortality or death on advanced MS. Simply having urinary symptoms affects your life. A large number of MSers in my clinic avoid going out as they are anxious about finding a toilet and fear being incontinent in public. Some stop working as they can’t tolerate the commute to work and their workplace is not suitable of their bladder needs. Social isolation due to urinary symptoms is vastly under-estimated in MS.”

“Nocturia, having to get up at night to pass urine, is a major cause of sleep disturbance with knock-on effects on daytime fatigue and sleepiness. Side effects of the drugs to treat bladder symptoms should not be underestimated either. The older generation anticholinergics, for example oxybutynin, that cross the blood-brain-barrier exacerbate cognitive impairment and should not be used anymore. All anticholinergics result in a dry mouth and worsen constipation. Sometimes the constipation can be so bad that MSers have to be admitted with faecal impaction and paralysis of the bowel; the latter almost always occurs in association with anti-cholinergic drugs.”

“At some stage MSers may need to start using intermittent self-catheterisation (ISC) and all its complications. The study below shows that ISC has complications and in MSers with poor vision or poor coordination ISC is very troublesome. Finally, when ISC fails MSers may need permanent catheterisation and this has it own complications in relation to infections and biofilm formation. Biofilms are these large sheets of bacteria that coat the catheters and bladder and a responsible for recurrent UITs and seed the development of bladder calculi or stones. The frequent use of antibiotics to treat UTIs selects for resistant bacteria and this in itself is problematic. Last year we have a woman with MS in hospital with a superbug; the bacteria that was causing her bladder infection was resistant to almost all classes of antibiotics. Fortunately, there was one class that she was meant to be allergic to that could be used. Her supposed allergy had prevented her using this antibiotic and had given her a life-line. When we tested her for an allergic reaction to this antibiotic none emerged, which allowed us to treat her infection. With regard to antibiotic resistant UTIs you need to seek advice from your doctor and please don’t use multiple courses of antibiotics without having your urine analysed and the antibiotic sensitivity of the bacteria causing the infection monitored.”

“The management of the problems highlighted above is not trivial and usually involve large numbers of additional staff, for example microbiologists, urologists, continence nurses and community-based disability teams. It is clear that if only we could prevent MS-related bladder dysfunction from developing in the first place we would save the NHS millions of pound each year. So we are a mission to optimise and improve bladder function in MS and to think and test new ways of preventing the complications associated with this major problem in MS.”

“If I said that optimal bladder function was an effective treatment to delay worsening disability you would think I was being distracted. However, if you want to manage MS holistically you need to tackle all the issues and not just cherry-pick the low hanging fruit or sexy topics. I would appreciate it if you could help Dr Annie with her with her survey below. This survey is part of a data gathering exercise to support a major research programme into bladder function optimisation in MS; starting with UTI prevention.”

Bolinger & Engberg. Barriers, complications, adherence, and self-reported quality of life for people using clean intermittent catheterization. J Wound Ostomy Continence Nurs. 2013 Jan-Feb;40(1):83-9.

PURPOSE: To examine barriers, complications, adherence, and health-related quality of life in people using clean intermittent catheterization (CIC).

DESIGN: This pilot study used a cross-sectional, survey design.

SETTINGS AND SUBJECTS: Forty-four community-dwelling men and women who had been using CIC for 2 or more months participated in the study.

METHODS: Participants were mailed the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) and a sociodemographic survey instrument to complete and mail back to the study office. Upon receipt of the completed forms, the participant was called to complete the investigator-developed instrument to collect the data related to every-day barriers, complications, and physician recommendations regarding the use of CIC.

RESULTS: The mean age of the sample was 56.6 ± 16.0 years (mean ± SD); 59% were women, and 93% were whites. The mean SF-36 physical component score was 33.60 ± 12.4, while the mean mental component score was 50.26 ± 13.9. Twenty participants (45.5%) reported that they did not void at all on their own. The median duration of using CIC was 60 months. Twenty-five participants (56%) reused catheters a median of 20 times. The most common complication was urinary tract infection (n = 34; 77.2%). The most common difficulties associated with self-catheterization were lack of access to a bathroom (n = 15; 34%); for women it was positioning to insert the catheter (n = 11; 25%) and dexterity (n = 9; 21%) reported by people with multiple sclerosis (MS). Although most participants reported catheterizing on their own schedule (n = 18, 40.9%) or in response to bladder fullness (n = 24; 54.5%), 84.6% reported a catheterization schedule co ge their bladder.

CONCLUSION: While the physical component SF-36 score in this sample was lower, the mental health component score was similar to the population norm for the age group. The most common complication of CIC was urinary tract infection and the most frequent catheterization difficulties were lack of access to a bathroom (34%) and positioning to insert the catheter (25%).

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • Prof G, with the early use of DMTs and their impact on relapses and progression is the incidence of bladder involvement in MS dropping? Do DMTs prevent bladder problems in MS?

    • Re: "Do DMTs prevent bladder problems in MS?

      Yes, they do. The evidence for this is buried in the data. If these therapies delay MSer getting worse on their EDSS they will delay or prevent bladder involvement. I have had several MSers going onto highly-effective treatments who have noticed improvements in bladder function to such a degree that they have been able to stop symptomatic treatments.

      You have given me an idea and I will ask the Pharma companies to re-look at their data sets to see if we can answer this question more definitely. There is a small investigator-led study on natalizumab and bladder function that supports my comments above. I will find it and post on it tomorrow.

  • Not another depressing post on how MS destroys our bodies. Anything positive to report would be appreciated.

    • Re: "Not another depressing post on how MS destroys our bodies. Anything positive to report would be appreciated."

      Apologies, this blog does what it says on the tin. Good, bad and other news. I will try and dig-up something positive for tomorrow. Please note you have to know about what MS can do to you to buy into new preventive treatment paradigms. You can't stick your head in the sand and say this won't happen to me. If it does happen to you it is often too late to do anything about it. Until we get reparative treatments prevention is best option.

    • This diverse reporting is what I appreciate most about this blog. The anticipatory guidance allows me to recognize issues I currently have (recently diaphragm spasms) or file away issues under 'things to watch for/be aware of' as my journey with MS goes along.

    • I disagree that this blog is either negative or positive, merely informational and factual. How you chose to interpret the blog says more about your attitude than the knowledge so meticulously gathered and presented here for our edification. I am grateful the researchers take time to present research in a balanced manner in terms patients can understand easily.

      Thank you!

    • Totally agree. Knowledge is Power. I have had MS for over 25 years and have done relatively well. I believe I have always gotten good care from knowledgeable Docs. After just 3 weeks on this site I feel like I've gained much info, incite and even inspiration. I never knew so many people were involved trying to research, improve MS and those affected. Thank you

  • I have to self catheterization and also have problems with constipation. The only lesions that have ever shown up on MRI are located in the Pons.

  • In have to agree with anon 12.01. There's a Marquis de Sade approach to articles on this blog – a picture of a shrunken brain, a picture above of someone self-catheterising. You are basically saying that if you have bladder problems you are a goner. Thanks. It's not about honesty of reporting, it's about drip feeding the horrors of this disease to those who already know how bad it is. Let's have a good news week – 7 days of positive articles which give us hope. On the MS Uk org site today, there's an article about remyelination studies. The work at Team G must be undertaking some work which must be looking at improving our situation! To misquote Tony Blair "remyelination, remyelination, remyelination'. Do something positive for MSers – you'll feel much better.

By Prof G



Recent Posts

Recent Comments