My future with a suprapubic catheter: One year later

On 20th June 2018 I was fitted with a catheter and began my future with a suprapubic catheter.

One year on, it continues to be a life-changing tool which has given me a new lease of life and indepence.

Of course, it hasn’t been all plain sailing and has had it’s fair share of minor complications.

My first catheter change, 10 weeks after my fitting, was a success but rather uncomfortable. 12 weeks later, I had another successful change.

But on my third change in February 2019, the complications began. The district nurse who attended appeared to be in her 60s and using a walking stick. On her arrival I was already having doubts. She took a while setting up and then when the procedure began, the complication started. Usually the nurse is supposed to do an immediate change; take the old catheter out and instantly replace with the new one. However, on this occasion there was a 10 second delay between the swap and I felt pain when she tried inserting the new one. After a few attempts, the nurse called her colleague for assistance but they were unavailable and advised to call an ambulance. This is because te longer the catheter is out, the suprapubic hole will close up.

An hour later I was on rout to A&E in an ambulance (with no blue lights flashing I’m afraid). Once in A&E I had to wait 30 minutes on the gurney before a bed became available.

I then spent another half hour or so waiting in a cubical. Eventually, a nurse arrived to come and try inserting a new catheter. She set everything up then as soon as she pulled the blanket from me she discovered it was suprapubic catheter and not a urethra catheter and explained she couldn’t do suprapubic catheters. This was frustrating considering the paramedics clearly stated suprapubic in the handover. Therefore they had to get a consultant from urology to come fit it instead. They eventually did but it still bloody hurt!

A month later, a very unexpected incident occurred. I woke up to discover the balloon had deflated and my catheter had come out. I think it was caused by a bladder spasm. I contacted the district nurses but they said they had no nurses available and to call an ambulance. I called 999 (for the first time in my life) and explained the situation.

Yet again, an hour later I was on route to A&E in an ambulance. Luckily this time I didn’t have to wait in A&E very long and they sent me straight up to the urology ward.

I met with the consultant who treated me in A&E the previous time and he attempted to insert a new catheter. Unfortunately the hole had become so small it was too difficult and painful to insert it.

I asked what the next step would be and they said I would probably need to return to surgery to make a new hole. I was under the impression this would be in a week or two but then they said it could be three months. They offered a urethra catheter in the meantime but I explained I can’t use them because they continuously come out when I’m having bowel movements. I was refusing to wait 3 months because it would mean wetting myself in incontinence pads several times a day and I have several plans over that period.

The consultant brought his boss along and he suggest doing an ultrasound scan on my bladder to see how much water was in there. He then offered to try inserting the catheter again. This time he did successfully insert it but it was agonisingly painful.

Since then, I had another catheter change 8 weeks later by the district nurses and thankfully a successful one.

Another issue I’ve had it on some occasions I feel the urge to pee and get cramps in my tummy. Plus sometimes I do actually pee and wet my clothes. I went to the GP and they prescribed me Oxybutynin. However, after a few weeks, I kept getting constipated from them. For a while the urge to pee subsided but recently it has occurred again but haven’t gone back to my GP yet. Can anyone suggest another medicine or treatment that could prevent the urge to pee?

Apart from these minor complications, the suprapubic catheter has been a life-line and still the best decision I’ve ever made. And as a bonus I’ve gone all year without getting a urine infection!

Have you got a catheter or considering a catheter? Share your thoughts, questions and experiences in the comments box or on social media.

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2 thoughts on “My future with a suprapubic catheter: One year later

  1. Hi! Great blog

    I’ve got a suprapubic. I’ve had mine in 12 years. It was life changing.

    I have the following three thoughts or suggestions of things that work for me. They obviously may not for others.

    1) If you have the ability to, change the catheter yourself. It’s a bit daunting but honestly not that difficult. It has the advantage of not risking relying on incompetent nurses, and knowing when to go slow due to biofeedback or pain.

    I take paracetamol and ibuprofen before changing it, and drink a very lot of water. Sometimes I may also get a bit tipsy on whisky, that seems to help! I make sure I lubricate the existing catheter well and move it about so the instillagel gets into the sinus (the hole) and I leave it there for a few minutes before changing it. I always do this before shower and bed.

    I wish I could find a cure for The Wrinkle (TM) In the absence of a cure, I find the above the best way to deal with it.

    2) For me, bypassing and bladder spasms are always positional: either the catheter is kinked externally from the way I’ve been sitting, or it isn’t happy internally. Changing position and/or pushing the catheter in a bit relieves it, though can make the catheter site irritated.

    3) Catheter and bladder irritation is always best alleviated by drinking a very lot of water, in my experience. Or alcohol. Alcohol works wonders. Half an hour to an hour after glugging either or both and I’m much much better.

    Just my 2p and all the best


  2. Thanks Doug for the advice. Unfortunately I can’t change it myself because of my physical disability and sight loss and I wouldn’t trust my carers doing.
    The positioning differs depending how well the carers secures the tube/bag to my leg.
    I deffo agree with the alcohol, I’m rubbish at drinking water regularly but as soon as two shots of vodka our in my system it flows naturally and clearly! 😉