I'm a long term (now 6 years+) surveillance patient - has worked for me so far, but not a choice taken by many with a PCa diagnosis. Given severe pre-existing bladder and sphincter damage - massive acute retention resulting from drastically enlarged prostate - I opted to drain via a 'Supra-pubic' (belly) catheter. This involved an initial op. to make careful incisions into the abdominal wall and past lower intestines through into the wrecked bladder wall. This is often described as a permanent open wound susceptible to inflammations and infection, which will reputedly start to close up quite quickly if catheter is not replaced rapidly. Not everybody wants a permanent foreign object sprouting from their lower abdomen, but I judged this far preferable to the full-time urethral catheter I had in place for the first 5 months, and also to trying disposable catheters which would have exacerbated sphincter damage/ incontinence and been - in my case - incompatible with normal life. I stopped using external bags a long time ago in favour of simply taping up the tap near the groin and draining regularly (no 'full' signals from the bladder, but kidneys definitely complain...)
Not saying it's been an easy ride, but just something you have to get used to - along with the various regular maintenance and emergency actions required - and best by far to get used to the idea of sorting out most problems yourself in first instance. Inability to drain will rapidly become a major emergency. A good stock of catheters and 'Optiflow' flushing bottles is essential, together with 'instilagel' antiseptic lubricant.
Happy to offer information / advice to anybody who may need to make choices in this area - and also to trade experiences with others who've had personal contact with suprapubics (we seem to be pretty thin on the ground...).
Cheers / David
'It couldn't possibly happen to me....' |
User
Hi David,
Neil also had a supra pubic catheter a couple of months back. Lymphoedema, urethral scarring and so on made this the only option as he also had a lot of soreness from the urethral catheter rubbing where it came out. The supra pubic has blocked twice and he has needed to go to hospital twice for a week at least not helped by the urologists inability to come up with or follow through any sort of plan. I hope you have better luck, none of these options are easy. We have found the district nurses are generally very helpful with catheter care ! Best wishes.
Fiona.
User
Hi Zarissa,
Sorry to hear about Neil's issues. Everything is bound to be exceptionally tender so soon after the op. Just wondered whether anybody had thought to tell you about the 'Optiflo' flushing bottles ? I only found out about them by accident - about a year after the catheter was first installed ! They can often sort blockages for a while, especially if you first warm them in the microwave for 10-15 secs - but be very careful. They come in two varieties, with and without a stronger citric solution to help free clots. May require a little perseverance, and certainly is a strange sensation to be pumping liquid in through the abdomen.... also need to be aware that if you pump in fluid but it won't come out, you could be seriously exacerbating the drainage problem - I've sometimes had to use several quite forcefully before getting any kind of result. Suggest you speak to either Uros or GP about this - they may well disapprove of any home intervention. Trouble is, help is very often not to hand when you need it most....
Please do stay in touch / David
'It couldn't possibly happen to me....' |