Interstitial Cystitis

INTERSTITIAL CYSTITIS AWARENESS MONTH: Life With a Catheter

Urinary catheters are an invasive medical device that are used to either control urination after surgery, assist in emptying the bladder or as a means of preventing urinary symptoms altogether.

As they are an invasive device, they come with a risk of infection, and urine infections account of 17.2% of infections caused by medical devices.  This is because the tube passes through the urethra and up into bladder, and can push external bacteria up inside, or even trap normal bacteria from being flushed out, causing a build up that could lead to an infection.  Particularly in women, urinary catheters are to be used extra carefully, due to the close location of urethra to the anus and faecal bacteria.

Why And When Are They Used?

Catheters are used for a number of reasons;

  • when the bladder fails to function at all, typically in neurological or spinal conditions where the nerves have been damaged to the extent where they can’t control the bladder
  • where the bladder needs to be operated on
  • where the bladder needs to be removed (NOTE: this is a different type of catheter altogether, and is actually a stoma)
  • when the bladder is healing, typically from an operation
  • when the bladder is not functioning properly (e.g. not voiding fully)
  • when there is incontinence to extreme levels
  • when a patient is unable to empty their bladder voluntarily
  • when infections are becoming a problem
  • when the amount of urine you are passing needs to be measured
  • when a patient chooses to use them (e.g. a very symptomatic bladder or as an alternative to a bladder removal)

What Are The Different Types?

1) Single-use catheters (also known as intermittent catheters, self-catheters) – these are discreet and designed for ease-of use for patients or the healthcare professional who is using them.  Lots of brands have different styles or varieties to fit a patients need, and they often come looking like tampons or lipstick, meaning patients can easily hide them from the public eye.  Most are self-lubricated, but the ones used in a hospital setting aren’t and need to be lubricated prior to use.   These are good for on-the-go use and can be disposed of in either a normal waste bin or a sanitary item bin, and because of the many different styles and types available, it is easy to find one to suit your needs.  Personally, I found catheterising on the whole incredibly painful and tricky to use.  The other cons are that they are an infection risk, may require you to be in all sorts of positions to use easily (which might be a struggle in a public loo) and it takes time to be able to do it without the use of a mirror.

coloplast-speedicath-compact-plus-intermittent-catheter-585819-MEDIUM_0

2) Indwelling catheters – these are inserted into a patients bladder through the urethra, and as will all catheters there is a male and female version.  Once the thing flexible tube is inserted into a bladder, a small balloon is filled with water and this keeps it from falling out of the bladder neck.  This is done externally – the catheter tube has one valve to connect the drainage bag, and one where a small syringe can be used to fill or empty the balloon.  Although you may feel it being inserted, which is quite normal for catheters, once it is in you shouldn’t feel it.  The drainage bag will often be secured to your leg and they come in all sorts of sizes and types.  You can even get things such as night stands so instead of having to keep it strapped to your leg whilst you sleep, it is in a better position.  The good thing about these is that you (obviously) won’t be needing to use the toilet, and I had my first one fitted when I had a missed kidney infection that saw me stuck on the toilet for hours.  Once the infection was cured, it allowed my bladder time to heal and rest and I had it for about 8 weeks.  It was easy to change the bags and wear comfortably, but I struggled to get it to be hidden under clothes and it was quite easy to be pulled and cause some discomfort.  Most indwelling catheters can be left in for 12 weeks before needing to be changed, and are commonly used post-surgery when patients are unable to get out of bed for a short period of time, or after bladder surgery where it needs to heal.

indwelling

3) Suprapubic catheter – this is essentially an indwelling catheter, only it dwells outside of the bladder through the lower abdomen rather than the urethra.  These catheters are used when there has been significant damage or surgery to the bladder and/or urethra, and those areas need to heal (can you imagine passing urine through an inflammed and cut urethra? Ow!).  They are also an option for patients whose bladders no longer work (e.g. spinal cord injuries), because they a bit easier to manage.  A suprapubic catheter was something that was suggested to me at one of my earlier appointments at the specialist urology centre, but it still carries an infection risk like all catheters.  They also still need changing frequently like the traditional indwelling catheter, and will need to be re-sighted if there is any problems.

What’s Their Role in I.C.?

Well, this is a bit tricky.  Patients with Interstitial Cystitis often suffer with repeated urine infections, therefore using catheters will likely increase their chance of developing more of them.  However, some I.C. patients like me get a lot of their urine infections from the simple fact that their bladder does not empty properly and this creates a pool of old urine in the bladder that increases in volume throughout the day and is a fantastic area of bacteria to grow.  So, using catheters in this situation can be beneficial.  On the other hand, some I.C. patients may find their infections come from the fact they struggle to pass urine, which again means urine staying in the bladder for a lot longer than is normal, so catheters can again help here.

Some patients will opt to have indwelling catheters fitted when their bladder symptoms are no longer managed.

What’s Your Experience?

Personally, I started practicing self-catheterisation about 2 years ago when my bladder symptoms were poorly managed and I wasn’t getting that much help.  I was taught how to do it, given some supplies to keep me going and advised on how to get more.  Self-catheters are available on prescriptions – you have an online account created by your specialist nurse for a brand that NHS trust works with, then you select the items you need and a prescription is sent to your GP to check before the items are delivered.  It was a simple and easy ordering method, I got a lot of free samples and my specialist nurse was a gem.

Despite having a lovely nurse to help me, I found it a nightmare. I would struggle to “get it in” (yes, you can laugh at that one!), it would hurt a lot and it would make me bleed.  I felt like I was failing and returned to my specialist nurse so many times for extra care and advice.  I was given smaller and smaller sized catheters, which whilst easier were still painful – it felt like I was scratching myself over and over whenever I did it and towards the end during my last bladder operation, I had scar tissue and narrowing in my urethra which is why I found it so difficult, but also showed the damage I had been doing.

So I stopped, but was then advised to try it again after the results of my urine studies were quite abnormal.

And that’s where things went really wrong.

I started getting a lot of urine infections.  Under the advice of my nurse, we changed the time of day I was practicing it, but that didn’t make much difference.  Then one day at work, as I slid the catheter in, I felt an agonisingly sharp pain that made me remove the catheter straight away, but caused the sharp pain again on removal.  I then noticed I was bleeding, and as soon as I sat back down at my computer at work, I need to go to the loo again.  And again.  And again.  I literally couldn’t stop.  It felt so intense – the urge to go was like nothing I’d ever experienced.  I was bleeding still, and started to get really bad pain.  I went to the hospital, declared fine and sent home – but still couldn’t stop going.  I was passing pure blood and developed a fever overnight.  I went back to the hospital the next day and they fitted my first indwelling catheter.  Yes, it took away the frequency, but it was so sore and the drainage bag was just bloody urine.  I was told it was fine, that I had just scratched myself.  However, I became poorlier and poorlier and was diagnosed with a severe kidney infection at my Out of Hours clinic.  I was almost admitted to hospital, but as I was keen to go home they let me.

cath 2

I kept that catheter in for around 8 weeks and my hospital apologised and apologised to me for missing it.  I had a good amount of time off work because the infection was so severe, and it turns out it never really cleared up because after I decided to have the indwelling catheter removed, I developed sepsis that had been triggered by a urine infection that had developed back into a severe kidney infection.

About a month after my sepsis episode, I had the indwelling catheter refitted – my consultant was super worried about how unwell I’d been with sepsis that they didn’t want to risk anything else happening – they wanted my bladder to rest and because I was still having a lot of symptoms, I was happy to have it refitted.

Unfortunately, I had it removed about 3 days after because it was so so sore I couldn’t sit or stand, let alone walk – we think I was scratched (for real this time) when they inserted it.

But, living with an indwelling catheter was fine.  I mean, it was tricky to hide it under my clothes but thankfully it was during the summer so my dresses were long enough.  I even managed to try a load of wedding dresses on with it, and although I felt embarrassed, my bridal stylist was brilliant and my bridesmaids did everything to make me comfortable.  I did have some initial struggles overnight, because it was tricky to  have it on my leg and turn over in the night, but my specialist nurse gave me a brilliant night stand to keep it on along with an extra long drainage tube so I wasn’t trapped.  The first time round it really did make a positive impact on my life, despite the infections.

cath.png

What caused that initial severe kidney infection?  They suspect I was brewing a urine infection anyway, but that catheter pushed it up inside, but I don’t agree with this – my husband and I think I did some serious damage to my urethra that day, and the severe frequency was due to that, but the constant amount of urine going through it created an infection at the wound site which tracked back up to my kidneys.  But we won’t ever know for sure.

My Tips for Managing or Using Catheters…

  • Wash your hands so well before using an intermittent one or cleaning your indwelling one – this will prevent the bacteria from your hands being transferred and causing an infection
  • Make sure you change the intermittent catheter if it touches any part of your “down below” other than the urethra – this will prevent any bacteria from that region being transferred into your bladder
  • Keep a track of when your drainage bags need changing
  • Drink plenty of water – a positive of the use of indwelling catheters mean that the drainage bags allow you to see the colour of your urine, so you will know when you are dehydrated
  • Avoid bubble baths with indwelling catheters – this can irritate urethras
  • Make sure your drainage tubes are long enough to make it more comfortable and prevent pulling
  • Keep the area super clean – wipe away from the urethra when cleaning indwelling ones
  • Don’t let urine drainage bags get to heavy or they may become uncomfortable and pull, but also it’ll prevent the catheter from draining properly meaning urine may be tracking up to your kidneys
  • Check the expiry dates on any single-use or intermittent catheters
  • Use a good amount of lubrication, as this will aid insertion
  • A mirror is a useful tool for those just starting out with self-catheterisation, as it will allow you to see what you’re doing
  • Some urology departments offer community district nurses to come out and help if you’re struggling with catheterising

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