This time next week I’ll be able to wee whenever I want, wherever I want thanks to a Suprapubic catheter. It’s been a long time coming, 3 whole years in fact since I first opened up to my consultant about the negative impact on my quality of life being unable to access standard disabled persons toilet facilities due to the extent of my muscle-wasting condition. Never in my life would I have ever seen myself self-advocating for an operation. Who in their right mind would willingly ask for surgery? You expect your medical team to bring the solutions to you, not to have to seek other people with similar conditions, in similar predicaments to yourself to problem solve yourself. That’s exactly what I had to do after 15 YEARS of holding it in all day, every day, restricting fluid intake to the bare minimum and battle constant urinary infections as a result, just to lead an active life as a full-time wheelchair user and Mum of 2.
As this op has been such a long time coming, with the help of good friends like Carrie (of ‘Life on the Slow Lane’) I’ve done my research enough to come up with a preparation plan ahead of time and thought it may be helpful to other disabled women if I shared what I’ve learnt from others with an SPC. Hopefully to save a lot of Googling.
Prep at Home
Catheter supplies storage –
Knowing I’ll be gaining a lot more medical supplies to manage and maintain the Suprapubic catheter at home, I knew I’d need an effective storage system to house monthly catheter kits, gauze, creams and any other bits and bobs that come with living with an SPC. Having an organised supply storage unit will aid my PAs on a daily basis so they can easily and quickly gain access to specific bits and pieces needed, without having to rummage around.
I found these large plastic drawers that had 6 storage drawers instead of the standard 4 for just £29. This appealed more as the more compartments – the better I could separate everything and make the system as simple as possible. Pop some handwritten address labels on the front of each drawer and there we have it!
Show and tell
It wasn’t just me that had to know how an SPC worked and what each part was for, it was essential my PAs and family members knew this too. So I printed out some of Carrie’s Suprapubic Catheter-related blog posts that give an easy-to-understand overview of the basics. What is a Suprapubic Catheter? The names of each part and potential complications with catheter changes for example. Everybody seemed so much more comfortable with a print out that wasn’t all medical jargon! Thank you, Carrie, for the handy printables.
YouTube also has some videos of people showing how their SPC works and you can even find some surgical videos of how it’s installed (if you will).
Check out this informative video 👇
Preparation for the Op itself
Like any operation, you want to make sure you’re going in at your best. So amping up self-care prior is should be the main priority. At the pre-op, you’re told to inform them prior if you feel you’re coming down with a cold/flu/virus or in my case, my arch enemies – a chest or water infection. If you don’t, you risk complications during the procedure, developing MRSA and/ hindering your recovery. So definitely;
- Drink lots of water
- Take a multi-vitamin
- Consider taking cranberry capsules to ward off potential water infections
- Keep stress to a minimum (if that’s even possible…)
Having a permanent indwelling Catheter doesn’t come without risks, though thankfully the pros do outweigh the cons. It’s important you know the complications to look out for, how to avoid them and what to do if you do experience any. Knowledge is power!
Potential post-op complications
- Disputes with District nurses over how often the catheter should be changed
- Leaving it too long between catheter changes to the extent encrustation happens and the tube, therefore, becomes stuck
- Bladder spasms
- Infection on the site
Advice on avoiding these issues
- Ask your surgeon how often they recommend the catheter itself be changed. Ideally around every 2/3 weeks, any longer and you run the risk of the tube getting stuck to the bladder wall as your immune system tries to heal the site over the balloon and internal parts. When scheduling a catheter change with your local district nurses, be firm and explain the surgeon said every x amount of weeks. If they argue, stand strong and say you’d like to avoid the tube getting encrusted inside, which would then need another operation to rectify (worst-case scenario). Sometimes if you appear like you know your stuff to these people, they cannot argue with facts. If you’re still faced with huge delays in getting it routinely changed, ask for a letter from your urologist stating how often and why. They cannot argue with your specialist.
- Try not to cancel/reschedule any routine catheter changes to prevent complications through your natural immune systems response to seeing the SPC as essentially a foreign body. If rescheduling cannot be avoided, take the next available opportunity!
- Many people experience bladder spasms as your body see’s the SPC as a ‘threat’ and will try to expel it by forcible contractures. Though some find the spasms tolerable, many do end up on some form medication for bladder spasms long term. Do explore medication to control the spasms if you’re finding them affecting your daily activities, don’t be too proud. The SPC is there to benefit you, not hinder you in other ways…
- Some people experience bypassing – leaking or full blown accidents via the urethra, this is most commonly due to intense spasms. Be prepared by having some pads on hand for the early post-op days until you get to know how your body responds to the catheter. If you’re bypassing from spasms, again medication can help with this. Other causes of bypassing are UTI’s or a weak urinary track.
- Clean the site around the catheter tube where it goes into your abdomen with regular soap and water, there’s no need to use alcohol swabs or anything clinical unless you’re immunocompromised. It’s normal to leak a little and gauze can help with this, but get seen right away to get antibiotic cream if there’s any discharge, foul odour or unusual pain.
Developing a Routine
Like most things, having an SPC routine is helpful to normalise this new tool in your everyday life. Whether that be
- Cleaning the site when you have a shower or along with your night skincare routine before you brush your teeth.
- Making a day in your diary each month when you order catheter supplies or setting an alarm on your phone.
- Create a schedule for changing flip-flo valves or when to bin a catheter bag that’s been used its maximum amount of times.
Whatever it is you need to do regularly in a timely manner, plan ahead and before you know it, it’ll just be a part of your everyday routine even if initially it seems like so much to remember.
Most importantly remember having something invasive like an SPC/G/J-tube/trachie will take a bit of getting used to. Allow yourself time to adjust to your new situation. When you feel overwhelmed at times, especially in the beginning – it’s important to remember your journey. How did you come to need this tool? Why is it important? Reminding yourself of these things will let you put things in perspective and realise feeling overwhelmed is perfectly natural, though often temporary.