An MS crisis with my dysfunctional bladder
29 March 2020. This MS crisis started when I was on holiday in Valencia with the family in February 2019. I woke up one morning wanting a pee but I was unable to insert a catheter into my bladder. The hotel staff were fantastic and directed me and The Wife to hospital where I was diagnosed with a UTI and an indwelling catheter was inserted into my dysfunctional bladder.
A week later, back in the UK, the catheter was removed, and I was able to restart Intermittent Self-Catheterisation. Phew, time to restart my MS-normal life.
Its not a UTI
Fast forward to 31st of May 2019, 2 in the afternoon, and the same problem occurred, I could not self-catheterise. I took myself to the nearest A&E hospital, in Watford, and explained the problem. Another indwelling catheter and I was kept in overnight. Next morning, I saw a neurologist who said that I would be admitted for an exploratory operation to check out my prostate. First, I needed a CAT scan and an investigation by cytoscopy.
During the cytoscopy the doctor saw scarring on the bladder wall that could possibly be evidence of cancer. The hospital changed the investigative operation of my prostate to a biopsy of my bladder wall to check if it was cancerous. Hey, good news, it’s not cancerous. Bad news I still had the bloody indwelling catheter and I was discharged. I was angry and very pissed off, also no nearer to knowing why I could not self-catheterise. A continence nurse checked that I could successfully self catheterise a few weeks later. As they say ‘hope springs eternal’.
My dysfunctional bladder
A consequence of my MS is that my bladder will have a spasm. There is no warning, no consideration to where I am, who I am with or what I am doing. My body malfunctions and the bladder leaks; this problem has been getting slowly worse since the 1990s. I started intermittent self catheterisation in about 2005 but that did not solve the problem. In 2017 I received Botox injections into my bladder wall. It’s wonderful, suddenly my wretched bladder stopped having a spasm. Indescribable relief, no more worry about my bolshy bladder.
My last Botox injection
The benefits have almost finished. It happened over 18 months ago in August 2018 and I need one every 12 months. I’m not too sure what causes the bladder to have a spasm, but I do know it is inevitable if I have caffeine or alcohol. The downside of Botox is that I can only empty my bladder by intermittent self catheterisation but now my bladder has spasms even without these stimulants. If I still had a indwelling catheter then urine would leak out around the sides, it happened more than once. Either option is a ghastly lose-lose situation.
Fast forward to March 2020
I have an appointment with a neurology consultant. The end result was bye-bye to the indwelling catheter but also no caffeine and no alcohol. I’ve now been on the wagon since 18th March, my life is a challenge in many ways. My bladder is very unpredictable plus no alcohol or coffee all of which is no fun.
Hope springs eternal
I recently received a letter giving me an appointment for my Botox injection on 19th August. That is nearly 6 months down the line. Meanwhile I must continue to live with my dysfunctional bladder and without coffee or wine. I moan but I do know MS is much worse for other people