Webs, women, and continence.

I posted this on my ABLCS blog and had several people tell me I should post it here to.  So for what it's worth here's my thoughts on this subject.

When I was first told that my bladder had to come out I asked about my options. It was then I felt like I had walked onto the set of Let's Make a Deal. Behind these curtains we have an external bag, an internal bag with abdominal stoma, or a new bladder that will work mostly like the old. No brainer I thought take curtain number three. I will add my vanity had a lot to do with it, I am only 38.

Usually when I am faced with something I like to know all my options before making a decision. In this case my fear of the agressive tumor inside me drove me to get it out as fast as possible. The neo sounded like a good option and I had found a great surgeon through my doctor. Now I have done the research after the fact and will say that honestly I probably would still have gone with the neo.

However, I would have been better prepared if I had known all the facts. Most sources agree that of the women getting neo's 33% will be incontinent, 33% will be continent, and 33% will be hypercontinent. Where the other 1% go I don't know. The Twilight Zone maybe. I have spoken to women who are continent or hpercontinent, but can honestly say that no one has talked to me about incontinence. Those that are continent love there neo's. Those that are hypercontinent say it's no big deal cathing in a place you can't see once you learn how. They only have to get up once or twice a night to empty and sometimes don't have to get up at all. The only issue some of them had was UTI's.

The other 33% is the crowd I have not heard from, but the one I fear I am part of. I know that it is early days for me since I am only 10 weeks out from surgery, but I fear that I am incontinent. My bladder will not hold more than 200ml no matter how many exercizes, methods and stretching I try to do. I reached the 200ml mark 4 weeks ago. That mythical number of 400-500ml seems impossible. I struggle to hold on just five minutes longer hoping my bladder will stretch a little bit more. The only result is I have to change continence pads. One to two hours is as long as I can go without pain, depending on how much I've had to drink. At night I wake about 5 times and tottle off to the potty wearing my ever so fashionable diaper scritch, scritch, scritch. My only reward a slight dribble. Scritch, scritch, scritch back to bed I go only to lay down and have my body relieve itself into the offending garment. At night and when I first get up I can not void properly so I got to learn that fabulous skill self cathing. I'm pretty darn good at it now if I can wake up enough to do it.

So ok maybe I am not part of the 33% who are incontinent maybe I am the 1% in the twilight zone. Neither here nor there. Buying expensive continence products and catheters by the truck load. I will admit there is a selfish vain part of me that wishes I was hypercontinent. Even though I know that comes with a list of it's own problems.

I would just like to let the others who might be like me know that we need a voice to. Writing and humor is how I come to grips with my problems. If you want to talk email, post, chat, or blog do it! Let others know they are not alone. in the meantime…………

Scritch, scritch, scritch I'm off to the potty!