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New Neobladder

6 years 11 months ago #44435 by wsilberstein
Thanks Mike. I expected incontinence and knew the kegels would take a while to make a difference, but I didn't expect continuous, nonstop dribbling of urine with intermittent gushes. My recovery has been great, but even though I didn't expect to be continent, I didn't expect this.
As regards bowel movements, I'm neither constipated nor having diarrhea; however, even passing gas requires a major effort and causes rectal pain.
I guess nothing prepares one for the recovery from an RC. I guess I'm feeling well enough to complain about this other stuff.
-Warren

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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6 years 11 months ago #44433 by mmc
Warren,

Here is the other link.

http://bladdercancersupport.org/forum/6-men-and-bladder-cancer/23545-updates-and-questions-on-neobladder-and-bowel-chgs?limitstart=0

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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6 years 11 months ago #44432 by mmc
Warren,

Here is one link. This was regarding my frustration with the early days of the neo. I got a lot of responses from folks that may be helpful for you. I will post another in a minute. Each time I switch pages it blanks what I wrote but didn't submit.

http://bladdercancersupport.org/forum/6-men-and-bladder-cancer/22077-new-neobladder-frustration?limitstart=0

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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6 years 11 months ago #44431 by mmc
Warren,


I had the same issue. I remember thinking I wasn't going to ever stretch my neo because it just leaked out.

I had complications so my bowels were a mess for a couple months. It will get back to normal. In the meantime, I think it is ok to take things based on your situation (e.g., Imodium or colace, etc.)

I will go back and read my posts on this topic because I do recall posting about my impatience with regaining continence. I think it was around the 4 week mark that I complained and about 6 weeks when I finally got the hang of it. Keep up the kegels. You WILL get there!

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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6 years 11 months ago #44428 by wsilberstein
Even though my cancer never became invasive it has been recurrent, high grade, and refractory to BCG, so I opted for an early radical cystectomy. I'm 3 weeks post op and had my foley removed today. I'm supposed to make sure I void every 2 hours, but I'd be thrilled if I made it more than 2 minutes without getting wet. I tried standing over the bowl doing kegels and even with my pelvic muscles contracted urine just dripped out continuously. I know sometimes when I'm sitting some urine builds up in the neo, because I'll move and feel a gush, but I've never made it to the toilet to empty. Anyone with a similar experience? Advice? Words of encouragement?
Also, does bowel function ever return to the pre-surgical state? If so, when?
-Warren

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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