Hi Phil

I have had my bladder removed and have a urostomy, but I know quite a few people who have had a reconstruction. I wasn’t offered this, and personally prefer the fact that I have a stoma. It’s easy to manage and I have never had any issues or infections, whereas all the people I know who have chosen a different route have had multiple issues with infection etc and been back in hospital. However, none of them regret their choice.

It’s a very personal thing, but I wanted everything gone and am glad that was my option. I think the thought of it is way worse than the reality-just my personal opinion-and while I’m not saying a stoma is trouble free completely( it takes time to find the right products to manage it) it certainly allows me to have a very good quality of life. I hope if you are given the choice you can make the right decision for you. 

Thank you for your reply. Your comments do accord with my thoughts in that the procedure seems less complicated and less invasive to the bowel etc. I am just trying to get a logical head round this although idea of being externally intact does appeal but as you say there are potential complications. I am scared of being incontinent with the reconstruction as I have heard this can happen. In a way I hope I don't have a choice as I am unsure at the moment but thank you for reassuring me about quality of life.  

It was easier for me having any form of choice taken away I think, and I was having much more than my bladder removed in my surgery so it seemed like just another thing to lose! But I would not be still here nearly 2 years on if I had not had it done so I did learn very quickly to live with it, and my accompanying colostomy! I’m also very happy not to have to get up in the night to go to the bathroom! 

Interestingly, the people I know who chose to remain “intact” as it were are all much younger than me. I am almost 60, and all the ladies I know around my age who had the surgery chose the stoma. I wouldn’t say I love having 2 bags, but in general they don’t bother me. I can do everything I used to do before, and am just back from a holiday abroad. Quality of life is actually great, all things considered. 

Your experience reassures me about the stoma and obviously you have had a much larger journey than me. My wife is an ex nurse and she will be able to help me so I am lucky she is there for me. She has a good phrase which is to think of a stoma bag as a "bag for life". Nurses do have a sense of humour. Not looking forward to next month but like you I want this gone. Take Care.

I prefer “bags for life” to bag lady! A sense of humour can be very useful, and it will be a real asset for you with your wife being a former nurse.All the best.