A Bag for Life!
I was allowed to go home on day 5 after my radical cystectomy. I was eating, only little bits, mostly yogurts and jelly, and my bowels had opened, although I had no control over them and it was the oddest sensation, but I was assured that over time I would get more control over them. I was still bloated and struggling with the wind (gas), so lots of peppermint tea, and boiled sweets came out to try and help pass it.
That’s one thing I will tell anyone having the operation: be prepared for painful gas. Also, if you are a lady, you will need some type of sanitary pads, as you do tend to get a discharge for a wee while. You will need to keep walking, too; every day, I would get up and do the stairs a few times, and I shall be honest with you, if you had asked me on week 2 how I felt, I would have told you I had made the worse mistake of my life and I wanted my bladder back.
Difficulties sleeping and nighttime leaks
Poor Tim, my husband, had to oversee me when I changed the bag daily; I was still so worried that I wasn’t doing it right, and yes, we had a few accidents, usually at 2am, when the bag leaked, or I had pulled out the night bag tube by mistake. We got used to changing the bedding while being walking zombies. I became aware of the “bag,” and sleeping was an issue as I had always tossed and turned. Even now, 8 months later, I am still aware of it, although it has got better and I’m getting more sleep.
Understanding how to manage my new stoma
Another thing that you need to be aware of is that not all bags suit you. I have a “convex” bag which fits into my hole where “Sally the stoma” lives, and I do need a “donut” (a pliable ring which helps seal the hole where Sally sits). It’s all trial and error. Thank goodness for the Stoma nurses, who were all happy to help. We changed to different bags, and I use a “belt” when I first change my bag, this gives me peace of mind, as I feel it pulls the sides of the bag more securely to my skin, making accidents less likely.
My first big outing after the surgery
Exactly a month to the day from the op, I was on my way to the O2 Arena to see the band the Foo Fighters in concert. I wasn’t feeling that great, and was so very worried about security at the event, going through my bags and whether I would leak or not. It happened, I did leak. The worse thing that I thought could happen, was happening, and we dashed out of our seats and into the disabled toilet. I was so glad Tim was with me as there were no shelves or anything to lay out my bag and wipes. I did manage to change the bag, and totally enjoyed the gig. I was so pleased that it hadn’t ruined my evening, and that I could deal with whatever Sally threw at me.
Eight months later
We are now 8 months on, and I love Sally Stoma so much. No more getting up and out of bed 57 gazillion times for a pee at night; I can also pee standing up like a man. It does take a bit of getting used to, with regards to emptying your bag. I’m terrible and will leave until it’s really full now. Everything is trial and error, and in the beginning it does seem like a whole lot of things to get used to, but trust me you will and you do.
For me, it was the BEST thing to do, and I am now living my life exactly how I want to! Who knows how much more time it has given me, too.
Have your views towards bladder removal changed since you were diagnosed?