Testing and management
UK HSPer, Adam Lawrence, who is well known to the Australian HSP community through his annual surveys on issues related to living with HSP, shares his experience of being tested for urine retention/bladder emptying and talks about a way to manage that where it is a significant problem, intermittent self-catheterisation.
He shares this information on his blog:
Thursday, 26 January 2017
Last week a nurse from the local incontinence came to visit, following a referral from my GP as a result of their letter from the HSP clinic in London. The main purpose of the visit was to measure my PVR (post void residual urine volume), but also for me to find out more about Intermittent Self-Catheterisation, or ISC for short.
It seems that ISC is a solution that some people go for with their bladder issues, and that has been a comment made in a few survey responses. I wanted to find out about this so that when it comes to making that decision myself I’ve got some knowledge.
I was given a LoFric guide “Living with LoFric, A guide to ISC for men”. I cant seem to find that brochure on line, but there are plenty of other similar ones on their site: http://www.wellspect.co.uk/For-users/Bladder-management/Getting-started-with-catheterization/CIC-Instructions-and-guidelines
The bladder collects waste from the kidneys. The kidneys produce this continuously, and it is collected in the bladder so you can pass it when you need to. Messages are sent from the bladder to the brain to indicate that bladder needs to be emptied, and then messages are sent back down to both contract the bladder muscle and relax the sphincter muscle, which starts off the flow through your urethra. The process should continue until the bladder is completely empty.
A few basics are described – normally the bladder should not contain more than 350-400ml. Normally we urinate about 4 to 6 times a day and occasionally at night.
The ISC is a tube which is inserted along the urethra and into the bladder, which then allows your urine to drain. It indicates that it may take a long time for the bladder to drain. Advice is given if you find it difficult to insert the catheter (cough or try to pass urine), how to stop dips/drops (put your finger over the end of the catheter).
Advantages to ISC are given:
- protects kidneys
- reduces risks of unrinary tract infections (UTIs)
- improve quality of life
- improve comfort
- reduce risk of complications and disease
- improve continence
- reduce residual urine
- increase autonomy
- not interfere with your sex life.
It seems that there are a number of different products, and it is important to select the right option, length and diameter. The LoFric catheters have a hydrophilic coating which creates a very wet and slippery surface when activated by water, which minimises friction. Other catheters use a gel instead.
It is recommended that catheterising is done in clean and suitable facilities, but notes that such conditions are not always available, and some catheters include integrated sterile water and handling aids – useful if you’re not able to wash your hands before starting.
Measuring PVR (post void residual urine volume)
Back to the nurse visit. She came armed with an ultrasound scanner. As might be expected I was unable to pass urine whilst she was here. She measured the amount of liquid in my bladder to be around 250ml, a couple of hours after using the toilet. I went to the toilet about half an hour after she left and measured my urine volume – about 250ml. My conclusion is that I don’t have a high PVR, and therefore at a low risk of infection, so no need to alter what I’m doing at the moment.
I have been receiving Botox injections in my Bladder for the last almost 4 years for what I thought was just over active bladder. I have just recently been diagnosed, at 55 years of age with HSP. My Neurologist has told me that Botox is used to treat Spasticity. I am hoping that this still applies. I have noticed both control and retention issues. I can usually force the void when I am not quite sure of the retaining. I hope this does not change my ability to receive the Botox.