Intermittent Self Catheterisation (ISC)

A Girl’s Guide.
to intermittent self catheterisation

Urinary retention is part of the picture for some people with Dysautonomia.  Sometimes, the nerve messages that allow us to pee, don’t work. I am so proud that I can manage my retention myself, thanks in no small part to our in-home continence nurse program here in New Zealand, some googling and a lot of determination!

Learning to self catheterise is one of the hardest things I have done.  Somehow, it is a mental hurdle as well as a technical one.  Even when you have been doing it for a while, there are times when you can’t make it work.  Those times can bring a grown girl to tears.  When that happened for me, my hubster got googling. He passed the iPad through the bathroom door with a quiet “this might help?”. The pictures he found for me helped a little, but I really wished I’d had a more practical guide.

There is nothing so relieving as being able to empty your own bladder. However, when you feel sick, or bending double makes you dizzy, it can rapidly become a stressful situation.   But it is possible!  I and my fellow self-catheterising friends will tell you that once you get used to it, ISC is a proactive skill and a significant personal achievement. It gives you back control of yourself.

For the next two weeks, I am embarking on a new self-catheterisation routine.  Instead of catheterising when I think I have gone into full-blown retention (no pee for two days), I’ll be catheterising after I go to the toilet and measuring my residuals. My urologist wants to see if I am retaining even when I think I have finished peeing.  My bladder picture swings from retention to incontinence.  At the moment, I’m incontinent. It might explain this.  So, because my mind has been full of all the things I will need to do to ‘go mobile’ with my catheterisation, I began to think about how much I have learned in the last two years. I wish there had been a guide that made sense to be back when I began. So I am writing it!  This is for all the newbie cath girls (sorry boys, your process might need to be written up by a guy).

What you will need:

Sterile medical gloves (or sterilised hands)
Catheter (these are supplied in New Zealand by the district nursing service)
Lubrication jelly
A small handheld mirror.
Baby wipes or antibacterial wipes.
Jug (only if you are asked to measure)
A chart and pen (only if you are asked to measure)
A private, lockable location.  You can sit on the toilet or recline in the bath.  When I first started, the bath was easier.  Self catheterisation takes longer than a normal toilet stop. You need to be able to do this uninterrupted.  If you have children and they are very little, set them up in a safe spot for the duration, or even better, have someone watch over them while you are doing your thing.

First, do a vaginal reconnaissance(!)

Before you begin with anything, you’ll need to know where your urethra actually is.  You may be surprised!  I once spent half an hour stabbing my clitoris (ow ow ow!) because I thought my wees came out from what looked like a hole under my clitoral hood.  Uh, nope!  Everyone’s anatomy is different. And the diagrams on the internet aren’t very detailed!  Check out this one.  See?  Not so easy to see what’s what. (Source)

en3009646(I think I shall have to draw something more useful and put it in this post!  Time to shine a light on the subject at hand).
It’s really important to get to know your ‘nether-lands’.  So, to find your urethra, recline in the empty bath with a hand mirror.  Gently stretch the skin on both sides of the invisible centre line that goes from your clitoris to your baby-hole (excuse the basic terminology).  As you stretch along that line sideways with two fingers, look for a tiny opening.  Urethras are very good at hiding and in the beginning, it took me a long time to figure out exactly where mine was!

When you are confident that you know, you are ready to begin.

 

The Girly Bits

 

Gather your materials

…where they will be easy to reach, on a nearby bench or stool. You’ll be one handed, because one of your hands will be holding your ‘nether-lands’ in the right place, so have everything near to the free hand. I am right handed so I use my right hand for all the busy work.

Prepare your girly bits.

Thoroughly clean the areas around the labia with the wipes.  Wipe the inner labia and the area between the inner and outer.  Clean all the way from the clitoris to the poop hole. Always wipe in a downwards motion, never using the same surface of the wipe for a return swoop.  Discard wipes.  Sterilise hands again or snap on new gloves after you have done this.

Get your catheter prepared.

Only open the end of the packaging near the tip of the catheter.   That is the end without the rubber fitting.  It is pointy and has a little hole in it.  Free the end from the packaging and swipe some lubricating jelly on the end of it.  I cover about 3-5cm of the end of the catheter with jelly.  Not so there are globs of it, just so it has a coating.  This will help it slide into the urethra more easily.

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Fold the packaging back over the lubricated end and put it somewhere in easy reach.  (NOTE: If you are using a tube of lubricating jelly, rather than a single use sachet, make sure you never touch the end of the tube with unsterilised hands.  I squeeze a tiny bit out onto my glove and swipe the catheter end through it. This tube should stay with your catheterisation kit, not be used for other purposes).

Just a note on catheters; people develop their own preferences.  The internet picture above shows a short catheter, the photo shows a Nelaton size 12, 40cm catheter. I prefer to use long.  The bigger gauge the catheter is, the faster you will drain, so once you are used to it all, a larger catheter might be your preference. Talk to your continence nurse about which one might be right for you.

Do the business.

You’ll need to be in a position where you can see what you are doing. If you get dizzy, you’ll need to be somewhere safe.  To start with, reclining in the bath was the answer for me.  Now, I perch on the front edge of the toilet seat.   If you are required to measure, position your jug on the floor or bottom of the bath, between your legs. Remove the catheter from it’s sleeve and let the rubber end fall into the jug.  If you are not measuring, you can let the rubber end fall inside the toilet seat.   Keep a good length of catheter up from the toilet bowl though, you’ll need it.

Using one hand, hold back the labia, so you have a good view of that imaginary centre line.

Pointing the catheter in a downwards motion, but pressuring it slightly inward towards you, slowly slide the catheter down along the centre line between clitoris and baby hole. You may or may not have enough sensation to know exactly where the hole is; don’t worry,  practise will help with this part.  When you are at the urethra, (or you think you may be close based on your reconnaissance!) angle the catheter in pointing towards your tail bone.  Repeat this process until you reach it. You will know you have hit the target when the catheter goes in and it stings a little (like that sensation you get if you have a urinary tract infection and you pee) but the sting should be momentary. Feed the catheter in until the wee starts to flow. Eureka!

When the flow slows down,  gently push the catheter in slightly more.  You may have more wee to come, right at the bottom of the bladder.  Do this a few times until you are happy that your bladder feels empty.  Slowly remove the catheter and drop it in the sink. You’ll attend to it soon.

The lost urethra

Pack up.

Gather up the catheterisation kit and return all bits and pieces.  Check the measure on your jug, write it down.  Run tap water through the catheter and shake it out again.  If you plan to re-use the catheter, it will need to be sterilised (microwave sterilisers are great for this) but I recommend a single use when you are just starting out.   Empty jug into the toilet and flush. Remove gloves and dispose of them.   Return your catheterisation kit to its home.  I keep mine in the cupboard next to the toilet.

Recognise Your Brilliance.

Look at yourself in the mirror.  See that person?  She is a total legend.  She deserves certificates and gold medals and pats on the back!  You did it!  You brilliant creature you!  Sadly, you won’t be able to share this most excellent achievement with many, so your feedback will be minimal, but I want you to know that I know just how amazing you are!  That thing you did just there?  Skill!

Just a wee Problem

On my last visit to hospital, I was suffering with a pseudo-obstruction, my bladder had also stopped working. I was admitted through the emergency department and was to go straight to the gastroenterology ward.  The ED staff must have been busy, because on this occasion they decided the ward staff could catheterise me.  Usually, I arrive to the ward already done. By the time I made it up to the ward I’d been retaining wee for two and a half days.  It was excruciating, even without the pseudo obstruction pain and a tummy that was distended further than a ten month pregnancy. When the nurse arrived to settle me in, I whispered awkwardly that I was very sorry, but I had my period and I was in desperate need to be catheterised, “so, so sorry”.  I felt embarassed that she would be doing it, apologetic that she had to.  She shrugged, came back with the catheter and a sachet of lube.  “You do this at home all the time, no reason why you can’t do it now” she said, turned on her heel and left me to it.

I was so shocked I couldn’t speak.  I knew I needed to sort it out straight away. The pain and discomfort was not about to release me just because I was upset.  I didn’t have the emotional energy to fight with her. I took a big shuddery breath,  picked up the gear and inched my way over to the bathroom.  By the time I got myself down onto the toilet, I was in tears.  But even if I hadn’t been crying, I couldn’t even see my girly bits because of the abdominal distention. I took a big breath and did it the way I always do. I imagined I could see what I was doing.
And, there!  I got that catheter in, first go, sight unseen!
The relief was incredible. I’m sure I was holding more than 1L of pee!  It took a very long time to drain my bladder.  But as it drained away I felt so proud of myself. Some things are hard to explain, but when you feel out of control with your body, victories like this one feel pretty important. I would have liked to have run the corridors of that ward shouting “Guess what I did?!  Bloody marvellous, I am!”  I would have liked to have shoved that catheter up that nurse’s nose. That’s what!  But I got myself back to bed, curled up and cried a little bit more.

Wee problems are not really that wee, at all.

 

13 thoughts on “Intermittent Self Catheterisation (ISC)”

  1. Fuck. Nurses can be real bitches sometimes. I know there are amazing nurses out there, and I know they are under enormous pressure, not paid enough and do an amazing job. I also know that it is virtually impossible to be compassionate 100% of the time. But still. Fuck me.

  2. I am so sorry that you had to experience someone who was so unkind and uncaring. It just breaks my heart to know that you had such a tough time on top of feeling so ill. My journey has been with Sarcoidosis and I have gone through flare ups and remissions since diagnoses in 1997 and continue to. The burning frustration and sense of of despair (for want of another word) that I have felt when on some occasions I have just needed that little help and I have struck a nurse that has been snappy and dismissive – it can be a lot to deal with when one is already dealing with a body that won’t comply. I love your guide – read from beginning to end…it was better than some guides I have read during my time studying for Health Science degree – and I mean that. Have you ever thought about authoring an e-book Rachel that can be used by (or made available) for Community Health groups?? I truly think your self help guide could have an important place as a online reference tool – and/or a paper version?? There could be some other chapters added . Sarcoidosis is also autoimmune and I know from my work in Podiatry that Autoimmune is huge amongst the population….. whilst each group of autoimmune sometimes has its own unique features – a reference on self help, coping, etc could be a very valuable tool for anyone who’s living with a autoimmune diagnosis. I know for me when I was at the start of this journey…I felt very alone and had no one to ask anything about it – like a peer. Wonderful post Rachel and I learnt a lot too! Thank you. X

    1. Wow, thank you so much for your thoughtful comments Nat. To be honest, I hadn’t thought of ever doing an e-Book on that subject, but when I read through your ideas, it did spark something! I will have to think on that some more (off she goes to the drawing board). There is so much that people with chronic illnesses go through, things that can be common to many forms of illness. What a fantastic idea!

      1. Yes and I think that references and something written that people really understand and see themselves in is very important. Most of the time as you will know, we get handed information about our conditions that is very medically based and often written in medical jargon and that alone can be very frightening and overwhelming when you are first trying to understand something. You already know so much about your own condition and dealing with the 1st line of specialists in the medical field and allied health professionals. I think you could easily have enough knowledge and material to form several chapters. The post you wrote sometime ago about going to see a Specialist and how to prepare…. that was very valuable information. You have knowledge of how things may impact ones life from both a patient point of view, from a mothers put of view, wife and family point of view. You also could have a whole chapter on how to prepare for Travel with a medical condition. (i think i recently read a good post Carly did on travel last year). Somethings are common to chronic illness that we are all living with and there I believe is a great area to compile and author a resource…….loads of things and potential I think…..your writing is so good, and its really your calling I believe. X

          1. Yes!! Thats it. I think your right, it would be just ‘tweaking’ what you have already written. All the base things you have actually done. Maybe when you feel like it, think about topic headings to flush out more ideas. Like Travel, Mobility, Personal Care, Mental health, Personal & family Support, Community Support, maybe a section on Financial impact (which could be broken down again on how when you have chronic illness one may have to revamp their vocation or forge out another one. Another topic could be Home Care (pretty sure you have touched on this as well in another post). Maybe a chapter on Health care Professional interaction (like Specialists). This could be very interesting from giving tips of being prepared for treatment discussions and follow up appointments. Thoughtsm thoughts thoughts!! Lots to think about and explore over time.

          2. I love being able to ‘workshop’ this, with your ideas, this way! Thank you! Your ideas are inspiring, I see the vision! I am nutting out a chapter skeleton.

  3. Wow – what an amazing insight into your everyday. I have never had to deal with anything like this and it’s just not something I have ever even thought about, but if I had, this guide would have me in tears of relief. I’m sure you will have helped so many people through your honest and brave post, and yeah, eff that nurse and her unhelpful attitude – you’re a legend! x

  4. PS; I think you are pretty good at Illustration too!…. maybe theres another thing to complement your eBook. Like in this post and others your caricatures really give the work a welcoming and friendly feel. This is what someone needs when you are trying to learn about new things too.

  5. I thought my cathing days were behind me over a year ago, when I had my hysterectomy. I even impressed my urologist at the miracle.

    Long story short, same bladder problems you describe, so back to learning how to do it all over again. I couldn’t do it. Tried and tried, used my mirror, nothing. Then I read your blog post, and finally got a hole in one! LOL Thanks for your picture and helping women deal with CIC or ISC.

    1. Oh Susie, your message made me so happy! This is exactly why I write!
      I’ve had quite a bit of criticism about this post because it is so graphic (only from people who don’t have to self-cath) and I am glad I have kept it up on the blog. I think it is so important to share the information, I am really really glad it helped you! Hole in one (snigger!) 🙂

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