Catheters…

Catheters are a confronting but vital-to-survival issue. I recently had SPC surgery, after failed IDC (Indwelling Catheter) and long term (close to nine years) of ISC (Intermittent Self Catheterisation). I now have an SPC (Supra Pubic Catheter), which is surgically placed and permanent. I will always now be connected to a bag, and have a surgical tube on me 24/7 that gets changed every 4-6 weeks. So, after nearly a decade, what would I tell someone whom is getting their first catheter?

Pelvic Floor Physio

Firstly, try pelvic floor physio to release the tension down there. Naturally, we want to guard our body from the pain, and tense up whenever a catheter is being inserted.

Also, side note, it is so confronting having to drop your pants and lay on a bed and have this tube shoved up inside of you, with about 5 nurses around gawking at you. Eeeekk! But my friend, I promise it gets better and easier with practice.

Nursing

Remember that these nurses have seen everything all before, and they won’t be noticing your body, anatomy and any insecurities you have about this. They want you out of pain and to do their job!

Lidocaine

My next tip is that you can ask for lidocaine applied topically, Funnily enough, this seems to be an option I’ve only ever been offered at private hospitals. Due to my EDS, local anesthetic doesn’t work very well for me, but if you don’t have that factor, I’d suggest advocating for it.

Drainage Bags and Flow

It is very important where you place your drainage bags. Always below the bladder level, so at night, I have a night bag and stand that sits below the height of my mattress. If in hospital, there should be clips that clip onto the below railing.

Editing and wearing the correct clothes.

This one is important. For longer pants, I alwyas make sure that they are tucked under the back of my knees, and off the wheels of my wheelchair. Some people have had success if free draining, to use leg bags and wear wide legged trousers; sorry to leggings lovers! I have started to wear oversized, loose, dresses with much more success, and can be fashionable. My favourite brands for these options are Commonry and Fayt the Label. I size up a few sizes to consider for the bags and extra abdominal distension; and for pain allowances, my Complex Regional Pain Syndrome prefers looser and organic fibers clothing over tight synthetic. I also love Boody clothing, and for the fashionable sleeper- Peter Alexander. I also like wearing the Polo Ralph Lauren, or similar, cotton loose shorts for sleep or around the house. I find the single levelled waist band is great for pulling it up a little higher to accomodate for tubes.

Pressure care.

I have had bad experiences with IDCs having pressure sores. I recommend Bepathen Nappy Cream for around the site of pressure, and rest as per your continence or wheelchair - accessible nurse or doctor.

Meds and supplements to diet

Hiprex has been helpful in reducing UTIs, but as is Vitamin C. You could try upping your ingestion of Vitamin C High foods, such as strawberries, raspberries, oranges etc.,

Confidence in wearing your catheters.

It can be really hard to feel confident, using whichever option- and I find it comes with a lot of pain. But remember, that you are so brave, strong and courageous to be dealing with catheters- you are a superhero! Dealing with any medical device, aid or condition is hard, and you have every right to be able to wear your life-saving device with your cute outfit with pride. Don’t let others tell you that you can’t show those things. However, I know this can be very scary and confronting, so remember to use your own judgement if this is the right time or stage for you. Let yourself grieve the body you don’t have, the reliance and pain that comes with this that isn’t fair, and all the way through to gratitude for being able to keep staying alive due to catheters. That is perfectly okay if you’re at or not at any of these stages, just let yourself feel the emotions, and remember how strong you are for managing this. These devices help us to be alive, have a quality of life, and do the things we want to do in life- keep the focus on what it allows and helps rather than what it limits, when you’re processing through the stages of grief.

Much love

L xx