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Thread: Bladder Surgery Q's

  1. #1

    Bladder Surgery Q's

    I have been traveling the boards here for a couple weeks, amazed at the wealth of information. Forgive me if I have posted in the wrong forum. I am a T12 complete para with no feeling for bowel and bladder elimination 5 years post. It's a long story of how I got here but right now I've have a Foley catheter for 2 years, previously had a supra pubic that leaked and had surgery a year ago to close it up.

    I need to get rid of the foley, during the 2 years I've pulled it out about 20 times with up to 20cc in the balloon. So I am leaking there. I tried leaving the foley out and doing a self cath but it just leaked, after this period of time my bladder won't hold much more then 100 cc's so a new SP is out unless I have a bag all the time that I hope to avoid.


    I saw a new urologist this week who is talking about bladder augmentation and continent diversion using piece of colon, not appendix. I am really concerned about making the wrong decision and want to be as informed as possible. I am already at risk for bleeding and blood clots so what are other risks and bad side effects of having either of these operations you've encountered? I've read that many of you are glad you did it but it almost seems like it will bring on more difficulties then I already have. A lot of the info is older so hoping there may be new information.

    How do you find a Dr for a second opinion? I know the internet is great but I can't ever seem to find what I want doing a search.

    I am curious if anyone has been able to train the bladder to increase the volume it holds. I would still like to go that route if I can avoid a surgery.

    So I can see my thoughts are wondering. I'm just hoping someone can give me some good questions for the DR and some encouragement for myself.
    thanks

  2. #2
    After (as I understand your post) about 4 years using either a suprapubic or indwelling urethral foley catheter, you bladder is probably pretty small and rigid. While I have read that some people with small bladder capacities have been successful enlarging their bladders by taking anticholinergic (antispasmodic) drugs like oxybutynin to decrease spasms and have plugged their catheters to try to stretch the bladder to hold more urine, it is a risky business and would be of doubtfully successful for you.

    Bladder augmentation is a big surgery with a lengthy complete recovery time, i.e., 8-10 days in hospital, 2-6 weeks before being able to return to your regular schedule and routine, 4-6 weeks before your bowel program is reliable and back on track.

    I am curious why your suprapublic didn't work. Was it improper placement of the stoma that caused it to leak? Were you taking anticholinergic medications to quiet spasms? What size catheter were you using?

    I use a suprapubic catheter and have for 2 years without any complications. A bladder augmentation with continent diversion was suggested to me before I had the suprapubic. After reading about it, I decided to take a baby steps approach to my bladder management. Personally, I reasoned I could always get the bladder augmentation/diversion in the future, if other methods didn't work, but I couldn't go back if I got the augmentation. If I were you, I would talk to my urologist again and ask what the chances are of another suprapublic working, given a different placement etc.

    I take it that you would like to be rid of the urine bag, but cathing 4-6 times a day around the clock has its drawbacks as well.

    Where in NH do you live? Try searching the internet for rehabilitation hospitals and facilities in your area. Call these facilities and ask if they have urologists to recommend who are familiar with neurogenic bladders post spinal cord injury. You may have to travel a bit, but it would be worth the trouble to get a good second opinion.

    All the best,
    GJ

  3. #3
    I was trying to make a long story short. . . my first SP fell out and the hospital refused to put it back in (head of urology doesn't believe in SP's) so I had to go back to the rehab Dr to put it back in. When he did he brought the bladder up to the surface and made a huge hole. During the next year I kept trying larger and larger caths up to a 24 to stop the leaking. I spent 2 years with it leaking constantly trying almost every anticholinergic with no help so I finally had surgery last year to close it (because after leaving it out for 6 months it still had not healed). throughout all this I kept telling the urologists that I wanted to preserve the bladder capacity.

    I guess I could put one in again but with my the small bladder I'm worried about reflux and I keep getting warned about bladder cancer with long term balloons in the bladder. It seems like there's no good solution but a SP is so much safer initially as far as surgeries go. then there's still the possibility of leaking. Have you had any problems?

    Of course there's a possibility of leaking with the diversion too. I just feel that every single decision I have made regarding my bladder so far has been the wrong one and I don't want to do that again.

  4. #4
    I am so very sorry for the experience you have had with the suprapubic catheter. I think your experience is really not at all typical. I know for me the suprapubic catheter has been a vast improvement over intermittent catherization.

    My suprapubic was placed with a 16FR foley catheter two years ago, and I am still using a 16FR foley and have absolutely no leakage. Was your suprapubic catheter placed with a "puncture" type surgery or an incision. The "puncture" type surgery is far superior to an incision technique.

    I strongly urge you to seek out a urologist with neurogenic bladder experience. All things being equal, a community practice urologist should be competent to place a suprapubic catheter, but I think your experience shows that you did not have competent surgery or care.

    I really hate to see you have to suffer a major surgery when a competent urologist could make a suprapubic work. As for the cancer connection, you can have regular check ups that will catch any leanings toward cancer and deal with that as it arises. A suprapubic, well monitored is not a cancer waiting to happen.

    All the best,
    GJ

  5. #5
    Quote Originally Posted by gjnl View Post
    I am so very sorry for the experience you have had with the suprapubic catheter. I think your experience is really not at all typical. I know for me the suprapubic catheter has been a vast improvement over intermittent catherization.

    My suprapubic was placed with a 16FR foley catheter two years ago, and I am still using a 16FR foley and have absolutely no leakage. Was your suprapubic catheter placed with a "puncture" type surgery or an incision. The "puncture" type surgery is far superior to an incision technique.

    I strongly urge you to seek out a urologist with neurogenic bladder experience. All things being equal, a community practice urologist should be competent to place a suprapubic catheter, but I think your experience shows that you did not have competent surgery or care.

    I really hate to see you have to suffer a major surgery when a competent urologist could make a suprapubic work. As for the cancer connection, you can have regular check ups that will catch any leanings toward cancer and deal with that as it arises. A suprapubic, well monitored is not a cancer waiting to happen.

    All the best,
    GJ
    Hi GJ,

    It sounds like Bartoj had an incision made and not a puncture. He said that a Foley balloon filled with 20ccs came out so that must have been an awfully large hole. Maybe he needs to get the incision sewn up and a new puncture put in its place. Or near its place.

    Sorry to read about your complications Bartoj.

    Bob.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

  6. #6
    Quote Originally Posted by gjnl View Post
    I am so very sorry for the experience you have had with the suprapubic catheter. I think your experience is really not at all typical. I know for me the suprapubic catheter has been a vast improvement over intermittent catherization.

    I strongly urge you to seek out a urologist with neurogenic bladder experience. All things being equal, a community practice urologist should be competent to place a suprapubic catheter, but I think your experience shows that you did not have competent surgery or care.

    All the best,
    GJ

    It was definitely an atypical experience because of the way the SP was put in. I saw 5 urologists after who say they'd never seen that before. But I'm past that now and looking for new solutions.

    My current urologist is neurogenic experienced with speciality in reconstruction. So obviously that is what she wants to do!

  7. #7
    Hello Bartoj,

    I had a supra pubic catheter inserted the old fashion way a long time ago. (1968) The "punch" type had not been developed back then so my urologist did it the old fashioned way... about a 4" incision. Because muscle spasms were so severe in 1968, all the stitches were torn out. My doctor said if he were to put stitches back in, I would only tear them out again. Now I had a scar 4" long and about 2" wide and it is ugly.

    Anyway, in 1972 I had the supra pubic catheter removed. I guess in 4½ years, my bladder didn't shrink much. When I cath now, I try to keep it under 500 ml but sometimes I forget and it'll get up to around 900 ml. At this point, it is painful and I get mad at myself for waiting so long.

    I hope you get your problem resolved as I know the feeling of frustration and hopelessness you can experience in these type situations. Probably 90% (or higher) of us have experienced your feelings.

    Good luck and keep the faith.
    Millard
    ''Life's tough... it's even tougher if you're stupid!'' -- John Wayne


  8. #8
    Quote Originally Posted by bob clark View Post
    Hi GJ,

    It sounds like Bartoj had an incision made and not a puncture. He said that a Foley balloon filled with 20ccs came out so that must have been an awfully large hole. Maybe he needs to get the incision sewn up and a new puncture put in its place. Or near its place.
    Bob.
    Hi Bob,
    the 20cc was foley that pulled out of uretha (female). my previous SP is sewn up last year (minor surgery and I had serious complications of bleeding then DVT clots). I could have a new SP but I really wanted to get away from a collection bag which is necessary because of my walnut sized bladder.

    That's why my initial question was if I could stretch the bladder to hold a little bit more. Of course then the problem of reflux occurs which my right kidney is starting to show.

    So I am very concerned about a major surgery like this. I'm not too successful in doing research. I live in New England and there are not a lot of hospitals with these specialties. I'm looking for trusted websites to find Dr's and information.
    Thanks for your interest

  9. #9
    Do you live close to one of these centers? They have facilities in Salem, Portsmouth, and Nashua.
    Northeast Rehabilitation Center
    URL: hhttp://www.northeastrehab.com

    Northeast Rehabilitation Center provides inpatient rehabilitation for patients with spinal cord injury, as well as those with brain injury. Using a progressive approach that focuses on a succession of therapeutic services, the center strives to return each patient to the maximum amount of function and independence possible.

    Using individual programs for each patient, a multidisciplinary staff can also help patients cope with the educational, vocational, recreational, and financial impacts of disability by teaching them adaptation skills. Family members are considered a key part of the rehabilitation team, and the center provides overnight accommodations to parents of adolescents who are in treatment.

    Northeast Rehabilitation Center is accredited by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), as well as the Commission on Accreditation of Rehabilitation Facilities (CARF).

    All the best,
    GJ

  10. #10
    Yes, GJ,
    I actually did my rehab at Northeast. They did not have that much experience with SCI in my opinion. Also they were not CARF accredited at the time. In hindsight they could have spent more time with teaching IC and I never would have been on this fork in road I'm at today.

    However I will call them just to see if they have new recommendations besides the DR who screwed up the incision to begin with.

    Millard, based on last months urodynamics, I barely held 100 cc's before it started backing up. I'm glad you were able to resolve to the SP. I've talked with many Dr's who are adamant that they shouldn't be used. So I have that in the back of my mind as I look for alternatives.

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