Homepage – Forum › Forums › Muscle Invasive Bladder Cancer › Number One Reason for Urostomy
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KIOWA.
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June 21, 2014 at 2:34 pm #8089
Greg
ParticipantDid you know that the number one reason for adults to receive a urostomy is bladder cancer? Other reasons include other diseases/conditions, defects and accidents.
Doctors “guesstimate” that approximately 2,000 radical cystectomies will be done in Canada this year, about 75% of them ileal conduits (urostomy).
Are there ten or fifteen major centres across Canada performing these surgeries? Perhaps a few more, perhaps fewer.
Who do you want doing your surgery? I’m thinking that I want the doctor who does this all the time looking after me. I’ve had this done twice at a major cancer centre/teaching hospital. When the uncommon arises, I want the uncommon doctor treating me!
Just sayin’…
Greg
June 22, 2014 at 11:25 am #17640Susan
ParticipantWow. 1500 ileal conduit people per year in Canada according to those statistics. That’s a lot of us wandering around, living our “new normal” lives. I belong to the Calgary Ostomy Society, but found that everyone I met there (except one person) was living with a colostomy or ileostomy. Obviously those surgeries are much more common than ours.
I also subscribe to the BCAN discussion group as well as our group here. There it seems that there are many urostomates, but also a great many people having the neobladder surgery, and a smaller number with alternate surgeries, like Indiana Pouch.
I so agree about the experience of the urologist/surgeon, Greg. Here in Calgary we have a special wing of the Rockyview Hospital dedicated to office space for our urologists, called the Southern Alberta Institute of Urology. Apparently it is the largest and most comprehensive urology centre in Canada.
I was at the Rockyview Hospital Urology Unit twice for TURBT’s and then again for my ileal conduit surgery. It still makes me feel quite emotional thinking of the excellent care I received on that unit. I felt very reassured by my surgeon, and confident in his expertise. The excellent outcome (so far) of my urostomy surgery has meant I’m a little bit grateful every day for my present life and cancer-free status.
June 23, 2014 at 1:40 pm #17644vals
ParticipantSusan: good to know that after 2 1/2 years after surgery you are doing so well and you’re grateful. Gives me lots of confidence for my surgery on Aug. 20. The only thing is: I feel wonderful now, bladder has never felt better. Still worried about blood ets, but it’s only happened twice. I cannot beieve a person could feel this well and have something wrong. I will try to remember eveyone’s confident messages while I’m recovering. Still scared to death.
June 24, 2014 at 1:42 pm #17647Susan
ParticipantIt wouldn’t be “normal” if you weren’t scared to death, Val. And I really understand when you write that you feel so well right now that it makes you second guess having surgery.
I was never really sick with my bladder cancer. Before my ileal conduit surgery I felt absolutely fine – no symptoms of the cancer at all.
But after surgery, the cancer (and the bladder, and the ovaries, fallopian tubes, and the uterus and the urethra) all gone! The cancer being gone … and knowing that I could never develop cancer in any of those other now missing organs, was a huge relief and I have been grateful ever since.
Of course you will be scared, but in the end, it’s what you must do.
June 24, 2014 at 2:12 pm #17648vals
ParticipantThank you, Susan. I had a total hysterectomy when I was 46 so all those organs are gone. It wasn’t because of cancer, it was heavy menstral bleeding, and because there’s so much cancer in the family, the gyno thought everything should come on even though I was fine other than that. So not much left in my abdomen. I had a colonoscopy one and a half years ago, it was fine, and I don’t need another one for 10 years. I find that odd.
My CT scans were fine. So that’s good. The uro says he does not think my lymph nodes are affected, but he says lots of things that are not correct. Again, thanks for the encouragement. May I ask how old you were when you had the surgery?
June 24, 2014 at 4:03 pm #17649Susan
ParticipantMy surgery was October 2011. I was one month shy of 66 years old. I had no complications, so that was lucky, but you can very well have the same lucky outcome. Recovery takes quite a while – months, but it’s not like you are sick during recovery – just fatigue easily.
I was also very anxious about the whole pouch on the belly thing afterwards. Really shaking in my boots, haha, when I had to do the pouch changes. But that all goes away fairly quickly, within weeks, and it becomes truly just another thing you do – almost as routine as brushing your teeth or putting on your glasses. Almost.
I have travelled a lot since the surgery. Eastern Europe for a month in the summer of 2012, and China in the summer of 2013. This summer it’s a month in Spain. I travel carry-on only, so my bag has a few clothes and lots of ostomy supplies, haha.Here’s a funny little fact about us women and having ileal conduits. You will be able to pee standing up! For about 6 months I kept forgetting to put the toilet seat down after using the bathroom, and annoying all my family, haha. I have watered many a tree on hikes in the woods, and no more squatting down and pants off to do it! That ends up being quite the perk, I think, haha.
June 24, 2014 at 4:35 pm #17650Susan
ParticipantWait a second, I forgot to say this. Even if you never go hiking in the woods or your ileal conduit doesn’t get used anywhere outside, it’s also a huge bonus in public washrooms to be able to stand in front of the toilet instead of sitting on it, or squatting over it, especially those “questionable” washrooms we all encounter every now and then.
June 26, 2014 at 6:14 am #17667KIOWA
Participant“A huge bonus”, Susan? Seriously. This is Greg we’re talking about here!
(sorry Greg, but the devil made me do it).
Ki
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