Yes I recall seeing some of your earlier posts re the SPC. You seem to have had a worse time of it than I have, but then yours has been a pretty hard journey all round.
I have my catheter changed by a Community nurse. I attend the local health clinic, though they have offered to visit me if I ever felt the need to take heavy duty tranquillisers for the change. So far, while I do experience a bit of discomfort, I can cope with it. Only lasts for 30 seconds then all over with. They tell me that the majority of SPC patients don't have any pain during the change - unfortunately I do. I don't generate much in the way of crystals, but the tube does ridge slightly when the balloon is deflated and that is what causes the discomfort. It's the removal of the old tube that I feel. The new one going in isn't a problem.
I have now had the SPC for 18 months. I have now stretched out the change period to 5 weeks and so long as crystals don't form, I am going to try stretching to 6 weeks, but that is as far as the Nurses will let me go.
I have been offered the option of having a Urostomy - in fact it was pushed as a suggestion by one Uro, but I wasn't keen. As you say it is a very final step and there is no going back. I still harbour a vain hope that one day my retention will be able to be fixed, so want to retain a bladder for now. My local Uro also thinks that the Urostomy is a bit drastic.
Fully agree with your last para. Been there, done that and never again!! Worst pain of my life.
All the best,
Age 68 at Dx
10/08 to 03/13 PSA 2.9 < 7.1
07/13 Bx 4+ cores from 12 GL 4+5 Scans clear
Path: Gl 4+3 PNI, bladder mgn +, SV, LN Neg, pT3a N0 Mx
10/13 PSA .03
11/13 PSA .07
12/13 12 month ADT
01/14 37 sess of RT
05/14 Incontinence back
11/14 Retentive due to RT nerve damage. SPC installed
12/14 ADT Break
05/14 - 09/15 PSA <.01
Post Edited (Chask) : 5/2/2016 11:06:08 PM (GMT-6)