Crippled bladder

14 years 10 months ago #25752 by mmc
Replied by mmc on topic Crippled bladder
Al,

I was wondering about you because I thought you were scheduled for an RC a few days ago.

I'm surprised that with a "crippled" bladder and the spasms and pain that you are having, you decided to hang on to the bladder and get BCG instead. My thought was that it is all the more reason to get rid of the bladder but I don't understand the details and haven't had that discussion with the doc so take it with a grain of salt.

Maybe you're just trying to hang on to the prostate? ;)

In any case, I hope that works out and that RC isn't needed.

Did I lose track and get my threads mixed up or had you said that your BC was invasive? If it is, I just don't have the knowledge to know if BCG can deal with that or if chemo or something else would be required. I didn't think it really helped if it was invasive. I'm only a "limited" expert though so advice of the doc is always required. :) How's that for a disclaimer? :)



Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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14 years 10 months ago #25751 by alsimons
Replied by alsimons on topic Crippled bladder
Thought I would keep you two updated as to what is happening as I owe both of you (Mike and Pat) a lot for the education you have extended to me. I started BCG on May 8th contrary to the recommended RC that was discussed due to the “crippled bladder” condition. New Urologist felt it was worth a try and if it fails we can go ahead with the RC. I am both confused and frustrated as to why I continue to get the painful attacks. I finally figured out how to describe it. It’s like having a bladder spasm with a Foley catheter except it does not go away for an extended period of time similar to a severe leg cramp. (Thanks to the B12 posts and the description by Holly.) So the Doc now has me on Oxycodone and that basically knocks me out. I’m still not sure if I am participating in an exercise in futility, but I sure am tired of not having anything done. So onward and upward and I’m keeping a journal that allows me to vent some of this angry phase I’m in. I guess that comes with the territory.

Pat, I got your email and what I said earlier still holds true. Good people find good people. Thanks for sharing. ((((((Hugs)))))))

Al

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14 years 10 months ago #25581 by mmc
Replied by mmc on topic Crippled bladder
OK. I'll share the patent on the "Crippled Bladder Canes" with you. :)

At least you are joining a club of lots of us with RCs. ;)

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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14 years 10 months ago #25580 by alsimons
Replied by alsimons on topic Crippled bladder
Thanks Mike can I share in the patent? :laugh:

And its good to see you back

I just returned from my first visit with my new Uro. I asked him if he had heard about a crippled bladder since my previos Uro called yesterday and asked me to stay under his care and told me that's what I had along with the cancer.

Yes he had. What scared me the most is he explained it to me. My cronic pain which started in December, after 3 cystos, 2 TURBT one cysto which ended up with a biopsy and electric shock treaments my bladder was basically protesting and shutting down. "Yes Pat dysfunctional". Due to this he feels BCG would not be an advisable path and recommends removal. So he gave me some happy pills to take before he does a cysto tommorrow and promised no biopsy.

So it looks like finally after 6 long months something will be happening and I might have some pain relief. :S

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14 years 10 months ago #25578 by Patricia
Replied by Patricia on topic Crippled bladder
Hey Al.....if you're female with a prolapsed pelvic floor and sexual dysfunction you can have a "crippled" bladder......:laugh:
www.ncbi.nlm.nih.gov/pubmed/15647882

I think its mean of those OB/GYN's and Uro's to make fun of our bladders..its probably politically incorrect also. I mean he could have said " This is non-neurogenic, uncoordinated behavior of the pelvic floor musculature " or "dysfunctional" ....but Crippled?.....:P
Just my random thoughts:S
with a wink and a smile..........Pat

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14 years 10 months ago #25573 by mmc
Replied by mmc on topic Crippled bladder
I did a google search on "crippled bladder" and got a lot of hits. I think this is more of a proper English term (as opposed to our American English).

Seems to be a term to describe a situation where the bladder is not functioning properly for whatever reason. E.g. not draining properly.

Mike

PS: I'm selling tiny little canes for people with crippled bladder. :)

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

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