Hi everyone,

I just found this forum, I can see posts were mostly in 2021, but I just thought I would offer my experience with a Radical Cystectomy and Ileal Conduit which had slight complications and ended up a nine hour operation, the complication was from a previous surgery in the early 80's which was a major bowel blockage due to salted peanuts, and they had to remove 11 inches of upper bowel, but all the adhesions in the bowel from all those years ago caused issues with my Cystectomy.
My Cystectomy was done on the 5th of December 2021, the main reason for this surgery was because I previously had a Suprapubic catheter, that small op was done in September 2016, Due to my bladder stopping working completely, prior to that, I had Urethal catheters for a number of years, due to my bladder being very hit and miss for working properly, lost all the feeling of wanting to pass urine, so my bladder would constantly overfill regularly and was in hospital numerous times for water retention in the bladder, on the worst case of that, which was way beyond agony, when they emptied my bladder, they got 2,100 ml of urine out, my suprapubic catheter started to hurt after about 6 months from being fitted, it gradually went so bad for virtually 24 hours a day, I ended up on 100mg of Morphine tablets every day to curb the pain, and even that struggled to work on some bad days, which was usually 3 or 4 days a week, so the final option was the radical cystectomy.
So I now have a stoma for urine, the Operation was partly done by robot, the rest by the surgeons hands, overall it went well, the complications with adhesions simply extended the op time to 9 hours, it was a rough recovery though and I was in hospital for 13 days, they came to show me how to change my pouches, which are Oakmed convex pouches, and I like those, so still use them now, they stick well, I have had a small number of leakages, where it's started to come away from my belly, and woke up a few times soaking wet, but that still happens, just not very often now, and now it only takes less than 5 minutes to change them.
It was simply done for quality of life, as I had none whilst I had the suprapubic catheters in, and now I feel it's the best choice I have ever made to have the Cystectomy, as I am totally pain free now, so from that view, the op was a total success,.
The biggest compromise with choosing the op was, that he explained firstly that if I had the op, which included removing the prostate as well as my bladder, there would be a very high % chance that I would never be able to have an erection again, my wife was with me at that consultation and was massively very supportive, and even under those circumstances, and due to witnessing the amount of pain I had been in for just around 5 years, she agreed that the operation was definitely the way to go, and said that I couldn't keep going on with the amount of pain I was in every day, so, I agreed and opted for the Cystectomy, now today, I I'm glad it was done, I have other health issues, but this operation helped the most and at least gave me some quality of life back.
Anyone who is looking at the option of a cystectomy to hopefully cure some major issue, have it done, yes, it can be a long recovery from it, for some, it can be upto 6 months and for some even upto 12 months, myself, it took about 8 months, but it was all worth it in the end.

I just realised how long my post is, I didn't realise I had rambled for that long, so I hope no one minds the length of my post.

Just one more thing, I wish anyone who is looking at this operation all the best, and hope all goes well with your recoveries.

I've added two or thre pics also.

Thanks and regards to everyone.

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