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New Neobladder

6 years 11 months ago #44462 by wsilberstein
George: by the definition I am not constipated (hard stool) or having diarrhea (loose or watery stool). I'm on miralax, colace, and Metamucil. Every BM, even every fart, requires a gargantuan effort, and I never feel done. Never had any problems before this surgery. My hemorrhoids are very unhappy.

-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 #44460 by wsilberstein
Spoke to Dr. Huang who tried to be encouraging, but...
He said he's seen this with some prostatectomy patients, implying not so much with his neobladder patients, although I'm not sure why there would be a distinction since the radical cystectomy includes a prostatectomy. Then he asked me about the fact that I had leakage around my urethral catheter, implying, although not stating outright, that it was an unusual occurrence which might have bearing on the situation. He asked me if I'm doing the kegels correctly. I hope I am, but since I can't even stop a dribble of pee, how would I know? He then said it was too soon to consider a clamp (can't remember what kind he said), said something about doing manometrics to check, trying physical therapy, biofeedback. I'm in favor of anything that works, but anything in NYC is an hour away for me. I'll have been out of work for 8 weeks. How much more time can I take to deal with this?!?

-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 #44442 by GKLINE
Warren
I'm sorry to hear about your trouble. The Incontinence thing is a Royal Pain indeed. I thought I would never be "normal" again. Even Now 4 1/2 years out.... I still have nighttime issues. Almost every night I wake up to a small leakage problem. CRAP!
But the daytime leaking will go away ...... eventually. Keep up the keegles and it will happen..... eventually.

I have the same thoughts about bowel movements. Every time I visit the Dr. he asks "Do you have firm movements?" I always tell him that the last firm movement was almost 5 years ago. He always says that the RC shouldn't have any bearing in that...... But It sure does.

I guess only time will tell. But time will make incontinence less of a factor.

At least this gives you a legitimate reason to tell bathroom jokes.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
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6 years 11 months ago #44441 by mmc
They will definitely get better Warren! It's frustrating for sure. You should see progress soon. Be sure your doc is aware of your situation and frustration.

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 #44440 by wsilberstein
Walking, kegels (hope I'm dong them right. I've read the description), continuously dribbling urine even while contracting those muscles. Feeling dry for a second - contract the muscles in hopes of standing up and making it to the bathroom and piss myself. Ugh! So disgusted. I was worried about continence and thinking about opting for the pouch, but my urologist said, "the pouch isn't always continent." He favored the neobladder, so I took his advice. Now I'm having buyer's remorse. Hope I made the right choice. There's no going back. I have 1 month until I return to work. Things don't have to be perfect, but they have to be better than this. :(
-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 #44436 by mmc
I understand the frustration. Glad the recovery is otherwise going well. It takes a while for things to settle down and you should start to improvements little by little very soon.

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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