Complete removal of bladder

Hi Mack,

Bladder removal is a life changing and altering procedure which can feel understandably daunting.

I had mine removed in November, so still a Urostomy newbie by all accounts but I can honestly say I dont think about it too much; I can do all the things I could before and in many ways because my bladder was so badly behaved I was virtually housebound, my stoma has given me my freedom back.

I dont need to empty my bag anywhere near as much as I had to go to the loo with my bladder: attaching the bag can be fiddly at first but your stoma nurse will help teach you and guide you as you go.

Recovery from the surgery did feel slow at times but you do get there!

Your local Urostomy association group are a great source of knowledge and support too.

Thank-you for your encouraging reply.

I had been reading Tracy Emin’s story and, oh my goodness!, poor Lass. 

Been living happily without mine for over 2 years now. Not a horror story at all. There is no constant pain after recovery from surgery. This does take a few months admittedly but I was pretty much back to normal in 3 months albeit careful about lifting anything more than a few kilos. Leaks do happen at first until you perfect a changing technique and everything settles down but just over two years on I can honestly say I haven’t had any wet bits for well over a year now.As for emptying several times a day well yes because it’s risky to let the bags get too full. However this is compensated by not having to get up several times in the night which I’m guessing yo do if you’re approaching surgery.

Plenty of info on here to ease the natural worries about impending surgery and it’s not all bad.

Hi Mack,I had the same cancer as Tracey Emin and my cystectomy just a little ahead of hers.I don’t miss my bladder at all.You can lead a full life following cystectomy and living with a stoma is not that bad.You shouldn’t be in constant pain afterwards.Jane 

Thank-you everybody for your encouraging comments.

x

Please don't take Tracey Emin's story as typical. It isn't. I have read her articles too and would say that I have never come across anyone with such problems and I had my bladder removed over 3 years ago and have been on this forum for nearly 2 years. 

Most people who have stomas will say that, after the initial adjustment, having a stoma is 'no big deal". I'm quoting someone on the Macmillan stoma forum (worth a look by the way) there and they are quite right. I do wish papers would print stories like ours which are much more positive. It isn't fair to frighten those who are facing this surgery.

Stapled is completely correct, no pain, easy emptying of stoma bags, a few tricks needed to be completely confident with fastening the bags on (1st month max and stoma nurses help you get comfortable with that), sleeping through the night because the urine drains into a 2 litre night bag as you sleep. (My poor husband would love not to have to get up multiple times per night). And as for having to keep emptying the day bags, that's quick and easy, plus when I go on long walks or to concerts or theatres I use a leg bag which couples to the daybed and doubles the capacity. Lots of spectators at football games use them. I used one first a couple of months after my operation when I went to the O2 to see Elton John's final tour. My daughter video'd me dancing to I'm Still Standing and emailed it to my CNS! (Aged 70).

People with stomas swim the channel, climb mountains, fly all round the world. Look on the Urostomy Association website - it's full of people of a certain age living a normal life and pleased they no longer have a diseased bladder cramping their style. Membership is free too.

Of course there can be problems occasionally after any major operation but Urologists have become very expert in doing urostomies

Mine was robot-assisted and recovery very much quicker than I expected.

I'm sure you'll do very well too.

And if you need any help or tips there are plenty of us here who are happy to advise.

All the best,

Latestart

Mack, it’s her artistic temper Magnifying her experience. Most ostomates are not like that.

Ahh…, and phew!

Your story has been such a boost for me. My grateful thanks. I thought, due to the stoma, my days of being able to go anywhere were over. 

Glad to hear it. Its up to each of us how we react to these things. I decided from the start I'd just get on with it and it has helped me  and my family to adapt.