New Neobladder - 100% Incontinenence- Is this typical & when will it get better?

14 years 10 months ago #25968 by Cynthia
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Thank you

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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14 years 10 months ago #25966 by mmc
That's WONDERFUL news! Keep it coming.

I will be asking my uro on June 16th when I have my follow up about the scar tissue thing. Thanks again for posting about that! You never know when posting a question or situation can not only get you answers but also help others that didn't even know that they had the question too.

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 #25964 by Wyvverninfale
My huband has continued to do great.He occasionally has a little leakage when he passes mucous. No big deal He's been very happy and has night time continence to as long as he gets up,We are not sure how we want to followup yet. Just enjoying feeling normal. The antibiotics stop Wed. But I don't think we will have problems tis time.
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14 years 10 months ago #25944 by reseda1420
Nice to hear that everything is starting to work as advertised.

One little caution though. Things will tend to 'tighten up' a bit and may even start to block and retain again. You may not be beyond some recurrence of the scar tissue, thus the continual volume, rate and retention checks.

However, your experience has made you sensitive to it now so I am sure you will catch it if it comes.

In the beginning the procedure gave me the best stream I've had since I was 20!

One plus side to your experience is that the retention probably strtched the neo more than it would if it hadn't occurred. That would put you closer to continence in both day and night than you would have been at this stage.
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14 years 10 months ago #25932 by Wyvverninfale
:) Great news. I d/c my husbands foley catheter today about 10ooam. (We were very afraid of what to expect)It has been working 100% perfectly,amazing! No leaking, voiding 300-500 ml Q 3 hours. This is what we were told a neobladder would function like, and this is what weve been patiently waiting for the last 2 + months. I think we appreciate it even more now then we would have if it worked right away. His antibiotics finish this Wed. I think this will be the First time no temps, exhastion, constant dripping and flank pain three days after we finish this course of antibiotics..... A note to anyone with constant dripping from neobladder, Tell doctor to check for blockage. We assumed my hubands neobladder was emptying due to the constant leaking, never dawned on us to check for residuals. I think it should be routine at the office but if your doctor doesn't check residuals, ask him to especially if your having no continence. (of course it could be something else but definitly have them rule out this problem)Thanks Lee, your were right on target with your advise about the blockage. Amazing how one tiny peice of tissue can make such a drastic change.Hoping this continues but had our first great day out in a loooong time.
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14 years 10 months ago - 14 years 10 months ago #25901 by reseda1420
I just missed you in the chat. You can expect some problems right after the cath is removed but they will start to go away in a couple of days. I did mine mid week had the cath out on friday. I was back to work Monday without much problem. I did take an extra pad with me then. I'm guessing you are using a leg bag during the day?

Since they went deeper into the the neobladder (which would explain the general anesth) maybe there might be some more problems. It is quite a heady experience to totally empty though. My stream was so strong in the beginning that it broke up into a spray. That kind of thing will calm down pretty fast.

I know where Hampshire is and that is some ride down to U of C. Fortunately, I am now on a six month schedule for that all day shot.
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