MS and Catheterization, Part 1: Bladder and Urethra Malfunction Solution

MS and Catheterization, Part 1: Bladder and Urethra Malfunction Solution

Make Change Happen
Catheterization was one of my biggest fears when first officially diagnosed with MS in 1994. As the years went by I thought I might be one of the few patients who do not experience malfunction in the urinary system.

Then, in 2012, something changed. I went from having to urinate frequently (probably because of incomplete emptying), to not being able to urinate at all.

The mind boggles. How can something so basic just stop working in what seemed like overnight?
My back gave me terrible pain. I thought maybe something in my back was blocking the signals in the nerves, because no one just suddenly stops being able to urinate, even with MS, do they? Well, I did.

Urinary retention

For a short introduction to urinary dysfunction, our own Michael Nace wrote a short article for Multiple Sclerosis News Today. 

A recommended maximum volume before you go (rather than hold it) is 400 milliliters (ml). The urge starts at about 150 ml, but everyone is different obviously.

I found an interesting article with details on bladder volume in an online book The Physics Encyclopedia that had exactly the data I wanted to verify about the “Volume of a Human Bladder.”

In the emergency room

I went to the emergency room to find out why my back hurt so badly, and why I could not urinate. Specialized staff performed a bladder ultrasound to see how full my bladder was and they actually gasped. That was when I knew the ER was the right decision. I had 900 ml of liquid in my bladder. They catheterized me immediately, then they admitted me to the hospital.

Learning to catheterize

Since my back hurt too badly to walk, nurses catheterized me using a really long tube and a jug into which the urine flowed. After the first day they trained me to do the same. I used a mirror to see where to insert the tube. It is critical to not “hope” and “poke” with the catheter because one lousy microscopic germ can cause a urinary tract infection (UTI).

Women are much more vulnerable to urinary tract infections from catheterizing. But there is no better method to solve the retention problem than “intermittent self-catheterization.”

I contracted five UTIs in the first two months of self-catheterizing. I was as careful as humanly possible, but it turned out I was one of the people exceptionally vulnerable to UTIs. The urgent care, ER, and doctor’s offices (depending on when I figured out I had one) always did the specific germ test. The general test they can do right away allows them to see “bacteria,” but then you get a generic antibiotic that is not always optimal for the particular germ. One time I had a very antibiotic-resistant one that took a very special “big gun” antibiotic. The antibiotic cost $150 for three packets, which I dissolved in water and took three times over 24 hours to help kill the bacteria.

I ended up on prophylactic antibiotics. This meant I took an antibiotic every day to try to stop any UTI before it could start. Still got the occasional infection — and I learned all the ER nurses’ names.

Odds are it will happen to you

I knew that about 80% of MS patients ended up with bladder dysfunction of some kind, so I was not particularly surprised I ended up in that group. But the suddenness of this life-altering change took me by surprise.

The really good news is that I found catheterization became casually routine without too much anxiety after the first year. It took me months before I dared to try it in a public restroom, but I was in a situation where I had no choice. I had to be at a public facility for too many hours to be able to wait. Since I “cath’d” so frequently, I worked out a system and have only dropped a catheter in the toilet bowl twice. Lesson learned — always carry multiple supplies.

Next, in part two

Please read my follow-up column next week, where details details about catheters and accessories for ease of use will be discussed, along with a bit more about my ER and in-hospital training experiences.

***

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.

Patrícia holds her PhD in Medical Microbiology and Infectious Diseases from the Leiden University Medical Center in Leiden, The Netherlands. She has studied Applied Biology at Universidade do Minho and was a postdoctoral research fellow at Instituto de Medicina Molecular in Lisbon, Portugal. Her work has been focused on molecular genetic traits of infectious agents such as viruses and parasites.
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Patrícia holds her PhD in Medical Microbiology and Infectious Diseases from the Leiden University Medical Center in Leiden, The Netherlands. She has studied Applied Biology at Universidade do Minho and was a postdoctoral research fellow at Instituto de Medicina Molecular in Lisbon, Portugal. Her work has been focused on molecular genetic traits of infectious agents such as viruses and parasites.
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9 comments

  1. I have been catheterizing for at least 5 years and I use a 10 French which is a very small catheter I get my supplies from Liberator Medical I use one that looks like a pencil and no one

  2. I will likely need to start cathing in the near future, and the very thought makes me ill. I even get woozy when the urologist does it. Like the song says, it’s different for girls, though I don’t know if it is any easier.

    • Paula Hardin says:

      I can understand the concern! When I mentioned the easier part for men, that only applies to the visibility factor, not the actual experience! Best wishes and good luck.

  3. Curtis Juncker says:

    I was surprised your test for urinary retention was an ultrasound when a uro dynamtic test gives the clinician much more information about your urinary track problem. Was your clinician a urologist?
    I like you had no urgency & a retention issues. Since I am male, my retention problem main cause was a blockage from BPH, which as helped with TURP surgery. However, I still had too much retention after the TURP surgery and lack of urgency which was caused by my MS, i.e., my brain and urinary functions weren’t communicating properly. I didn’t want to self cath so my urologist suggested that I try a sacral nerve simulator. I’m glad I did this painful recovery procedure because it brought back my urgency. The other good side effect was that is reduced my spasticity in my legs & feet by approximately 50%. Have you tried the Interstim II sacral nerve stimulator?

    • Paula Hardin says:

      No I have not tied a nerve stimulator. I will have to look into that. Wow, you had it very rough. I appreciate you sharing your experience because I have not heard any men with MS talk about this problem before. I had a urodynamic study once years ago, and ended up with a severe UTI 6 or more hours in the ER in July (never get sick in July, it is when the new residents start who know nothing much and won’t pick your case! ha ha). They finally handed me a prescription and told me to go home. There was no 24-hour pharmacy in the town. the next 7 hours or so were miserable. It taught me to never leave the ER without at least 1 antibiotic. Surprisingly enough, this situation came up again, so I refused to leave without an antibiotic. They were a hospital and they had a pharmacy so it should not have been an issue.

  4. louise says:

    Hiya – can I ask if you are still on long term antibiotics – my hubby is in a similar situation with constant UTI’s. are you going to have to take them forever?

  5. Rose says:

    I was diagnosed 35 years ago with MS. One of the signs I had was not being able to urinate. One of the issues I have is that doctors do not believing that I am having a bladder infection. My bladder is one day ahead of showing positive UTIs results when testing. I have finally found a doctor who believes that I have chronic bladder infections and prescribes a low dose antibiotic daily. I have, also, unsuccessfully tried self catherization. We as MS patients have to muddle our way through this disease and find what works. There is no sure fire answer for you; best wishes on finding what works for you.

  6. Why do some nurses half ‘kill’ you and torture you when putting in a catheter? Some never hurt and when another nurse does it, you about go through the ceiling. They really don’t have to treat us like this. I don’t have MS, but am having a bladder lift & had to be catheterized prior to the surgery for some tests. I watched the nurse..she just SHOVED that catheter up into me as quickly and savagely as she could.

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