• Posted by SailorMan on September 14, 2008 at 12:34 pm

    I had my R/C a month and a half ago and as the recovery moved along, the doctor removed the foley (Yay!) but in somewhat of a surprise to me, I got very little urine through it with most still coming out through the SuperPubic tube. Well, the doctor was not alarmed but before he was able to go in for a look, I came down with an infection. Then as I healed from that (and urine through the urethra stopped), he looked with a cystoscope and found a stricture in my urethra and scheduled a procedure to work through it. THen infection took back over while we waited. Last Tuesday, he went in on a scheduled half hour procedure and got through the stricture as planned but then as he moved up the urethra, encountered scar tissue just as he got to the neobladder. His partner had been operating in the next room and as he finished came in and he took out the superpubic tube and put a cystoscope in through that hole and was also able to see the scarring from within the neo. At this point they closed things up as the planned half hour procedure was now more like two hrs.

    So we are at a strategic pause while they gather data about which way to move next. The neobladder itself is great, cystogram, loopogram, CT Scan, visual inspection have all been super but it needs an outlet that works. So my doc told me he is reaching out to a number of people in the field for advice. One name he mentioned was Dr Bochner at Sloan Kettering whose name has often been mentioned on this board.

    Basically, the problem is that they need to get through the scar tissue without injuring the neo or the sphincter and it has to be able to remain open, with a foley at first and then by itself.

    If we can’t get this done, it appears that I will have to get the neo converted to either an Indiana Pouch or an Ilieal Conduit.

    Oh, and later in the week, another infection spiked up and this time, based on cultures, they switched me to Cipro. This morning was the first time I felt much like posting about it.

    SailorMan replied 15 years, 8 months ago 7 Members · 11 Replies
  • 11 Replies
  • sailorman's avatar

    sailorman

    Member
    May 26, 2009 at 9:26 pm

    I guess its time for an update on this.

    My urethra has remained blocked by the scar tissue but we do have a plan to fix it. Dr Bochner never returned any of the calls that my docs made to him but they were able to get help from a variety of great surgeons. They found a surgeon in St Louis who apparantly specializes in Urethra repair. he is actually a good friend of one of my local docs and he will prbably come here for a week or so visit and take care of my issue. His plan is NOT drilling/cutting through the scarring but rather reattaching the urethra altogether.

    We had been talking about doing it this year but I had another more pressiung problem with a kidney that had to be removed so we are just going to get stronger/recovered and think a bout this sometime next year. In the meantime, I have an indwelling catheter in the surapubic position and we have managed to find a “valved catheter” that drains when I want it to and without a bag so that is not so bad for me right now.

  • Wyvverninfale's avatar

    Wyvverninfale

    Member
    May 23, 2009 at 5:25 am

    Did you have a problem with continence or incontinence following the procedure.

  • sailorman's avatar

    sailorman

    Member
    September 18, 2008 at 6:48 pm

    BaliHigh, it looks like we can come out.
    Sat morning OK?

    Email me at [email protected] which goes to my blackberry so I see it pretty quickly

  • balihigh's avatar

    balihigh

    Member
    September 18, 2008 at 4:50 pm

    I do hope it works out but will understand if there are conflicts. I just got good news from the doctor’s office. My appointment is next Wed and if everything is okay, we can head home. It seems like forever since we have been there and I am a little homesick.
    Nancy


    female 60
    1/08 dx 4 tumors TURB
    T1 G3
    12 BCG + interferon
    5/08 another tumor/TURB
    9/08 RC illieal conduit
  • sailorman's avatar

    sailorman

    Member
    September 18, 2008 at 1:45 pm

    BaliHigh, its a definite maybe.

    I need to talk with my significant other to make sure that my plans don’t conflict with “our” plans

  • leigh's avatar

    leigh

    Member
    September 17, 2008 at 10:07 am

    Hello SailorMan,

    4 months after RC I started to have problems with urination as it begame harder and harder to push out the urine. A cystoscopy discovered scar tissue at the opening of my new bladder causing the restriction.

    Shortly after I had an op to remove the scar tissue and widen the opening and to this day I have thankfully had no problems and my flow is far better.

    I remember it taking a good week after the op before urination became normal again…probably due to swelling in the area.

    I wish you well and hope that this is only temporary for you…

    Leigh


    Leigh, 39
    Dx July 2007
    TURBT July 2007
    RC/Neobladder ,Studer Pouch, September 2007
    Erasmus Centrum Rotterdam
    TNM Classification: pT4 N2 Mo
    4 cycles aduvant chemo Gemzar & Cisplatinum
  • balihigh's avatar

    balihigh

    Member
    September 16, 2008 at 10:23 pm

    Wondering how you are doing and if you are up to visiting me this weekend. I thought your idea was great.
    Balihigh


    female 60
    1/08 dx 4 tumors TURB
    T1 G3
    12 BCG + interferon
    5/08 another tumor/TURB
    9/08 RC illieal conduit
  • sailorman's avatar

    sailorman

    Member
    September 16, 2008 at 10:17 pm

    A couple of answers to the comments provided.

    The stricture was repaired – at least for now but without urine flow through it, it may recur util we can get the scarring fixed

    I live within 50mi of NYC (and Dr Bochner) so if he wanted to do this himself, it is within the range of what I could probably do but I do ohave a lot of confidence in the team I am with, they’ve done well thus far and just need to get some ideas from some of their collegues.

    I was surprised when the possiblility of a conersion to a pouch was raised. We will need more info on what it entails.

  • wsilberstein's avatar

    wsilberstein

    Member
    September 16, 2008 at 3:32 am

    Perhaps I should have chimed in sooner, but this situation is completley different from mine since I get pain and urinary symptoms from a urethral stricture, but my stricture is in the penile urethra, nowhere near the bladder sphincter, and I still have my bladder, and no significant urine flow issues.
    Post surgical scarring is a tough problem when the scar causes problems. When you’re working in a tight place trying to create a connection of a neo to the urethra, scar tissue in the wrong place can get in the way, and surgery always risks more scar tissue. If I recollect correctly, there was another man who had scar tissue obstructing his neo, but I can’t rememeber who. This is by far the bigger problem, and should be taken care of by the top surgeon. If that issue gets resolved, then we can compare notes on any urethral stricture issues.
    If you have any specific questions regarding urethral strictures and my experience, I’ll be happy to answer, but you really can’t judge the impact of the urethral stricture until the scar tissue obstructing the outflow from the neo is resolved.


    -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 5/2014
    Pediatrician
  • 's avatar

    Guest
    September 16, 2008 at 2:24 am

    Bochner certainly takes on the tough cases…too bad he’s so far away…with scar tissue and a stricture….ouch. I may be wrong but i don’t think they can do an Indiana as they’ve already used up much of your bowel…i’ve certainly heard of a reversal to the ileal conduit. Hope they can figure out how to remove that scar tissue endoscopically but i’m not sure what they can do for strictures. Warren has had a problem with that..maybe he will chime in soon………….hope all goes well……….Pat

  • eddiek's avatar

    eddiek

    Administrator
    September 16, 2008 at 1:00 am

    Will,

    Sorry to hear all of the difficulties that you are having with your neobladder. I believe that Cyndi has been on Cipro for infections, it seems to work well. Hopefully, the doctors will be able to resolve the issues with your neobladder. Please take care and keep us posted when you are able.

    Ed K.


    Edward J. Kinsella
    American Bladder Cancer Society
    Board of Directors – Treasurer/Secretary

    & Caregiver

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