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  • Surgically expanding size of bladder

    Hi there,
    I have a friend who's not able to retain more than 200 ml. in his bladder. As a result, he's constantly leaking because it doesn't take much for his bladder to fill up.

    His urologist has told him it's either foley or a surgery to expand the size of his bladder. Has anyone done the bladder surgery and if so, what were the results, side effects and post-op challenges/problems? What should he be concerned with?

  • #2
    Bladder capacity can be limited either because the bladder is contracted and shrunken, or because bladder spasms occur (instability) at a low capacity. With the latter, bladder injections with Botox would be the next step if oral medications cannot control the high pressures and spasms. If the bladder is actually contracted (more common if the person has used an indwelling catheter or other continuous drainage of the bladder for some time), then a major surgical procedure called a bladder augmentation (also called a clam-shell cystoplasty) may be recommended.

    This is a major surgery...I tell my patients it will feel like they were hit by a truck for about 7-10 days. A segment of large bowel (occasionally stomach is used instead) is separated from the colon (with the blood vessels intact) and fashioned into a sheet of tissue. The bladder is split lengthwise and the bowel segment is sewn in place like a patch. This makes the bladder larger, with lower pressures. When you come out of surgery, you have an NG tube down your nose (no eating for up to 7 days) and multiple catheters in the bladder and often in the ureters as well. There is a good sized abdominal incision to heal in addition to the augmented bladder sutures.

    Once it is healed, intermittent catheterization must be done (reflex voiding is not an option). Multiple catheters are in place while the healing occurs and are removed at about 2-3 weeks. At first intermittent cath may need to be done as often as every 2 hours to avoid stressing the suture lines, but generally good results would be to be able to cath every 4-5 hours with a capacity of 450-500 cc.

    Do a search on our forums using the word "augmentation" and you will find many previous discussions about this.

    Your friend needs to find out why his capacity is low, as if it is primarily the spasm and not the contracture of the bladder, Botox should be considered prior to this major surgery.


    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


    • #3
      Wow, what an ordeal. But thanks so much for the info.

      I don't have all the details on his conversation with the urologist but when he told me on the phone about the surgery, I automatically thought this can't possibly be good. I'll be seeing him this weekend and find out more.

      Comment


      • #4
        Originally posted by SCI-Nurse View Post
        Bladder capacity can be limited either because the bladder is contracted and shrunken, or because bladder spasms occur (instability) at a low capacity. With the latter, bladder injections with Botox would be the next step if oral medications cannot control the high pressures and spasms. If the bladder is actually contracted (more common if the person has used an indwelling catheter or other continuous drainage of the bladder for some time), then a major surgical procedure called a bladder augmentation (also called a clam-shell cystoplasty) may be recommended.

        This is a major surgery...I tell my patients it will feel like they were hit by a truck for about 7-10 days. A segment of large bowel (occasionally stomach is used instead) is separated from the colon (with the blood vessels intact) and fashioned into a sheet of tissue. The bladder is split lengthwise and the bowel segment is sewn in place like a patch. This makes the bladder larger, with lower pressures. When you come out of surgery, you have an NG tube down your nose (no eating for up to 7 days) and multiple catheters in the bladder and often in the ureters as well. There is a good sized abdominal incision to heal in addition to the augmented bladder sutures.

        Once it is healed, intermittent catheterization must be done (reflex voiding is not an option). Multiple catheters are in place while the healing occurs and are removed at about 2-3 weeks. At first intermittent cath may need to be done as often as every 2 hours to avoid stressing the suture lines, but generally good results would be to be able to cath every 4-5 hours with a capacity of 450-500 cc.

        Do a search on our forums using the word "augmentation" and you will find many previous discussions about this.

        Your friend needs to find out why his capacity is low, as if it is primarily the spasm and not the contracture of the bladder, Botox should be considered prior to this major surgery.


        (KLD)
        I am still debating on wheather to have an augmentation done or just get a urostomy done to stop my bladder accidents becuase Botox shots didn't work.
        I was wondering if using part of your stomach for the augmentation would screw up a feeding tube. I got a GJ feeding tube implanted in late January/early Feburary because of gastroparesis, and I don't want anything to get screwed up.
        Also, if all your medicines and stuff go through the jejunal part of that tube, do you still need an NG tube during the augmentation procedure? I absolutely can't stand getting NG tubes placed!

        Jessie

        Comment


        • #5
          Originally posted by SCI-Nurse View Post
          Bladder capacity can be limited either because the bladder is contracted and shrunken, or because bladder spasms occur (instability) at a low capacity. With the latter, bladder injections with Botox would be the next step if oral medications cannot control the high pressures and spasms. If the bladder is actually contracted (more common if the person has used an indwelling catheter or other continuous drainage of the bladder for some time), then a major surgical procedure called a bladder augmentation (also called a clam-shell cystoplasty) may be recommended.

          This is a major surgery...I tell my patients it will feel like they were hit by a truck for about 7-10 days. A segment of large bowel (occasionally stomach is used instead) is separated from the colon (with the blood vessels intact) and fashioned into a sheet of tissue. The bladder is split lengthwise and the bowel segment is sewn in place like a patch. This makes the bladder larger, with lower pressures. When you come out of surgery, you have an NG tube down your nose (no eating for up to 7 days) and multiple catheters in the bladder and often in the ureters as well. There is a good sized abdominal incision to heal in addition to the augmented bladder sutures.

          Once it is healed, intermittent catheterization must be done (reflex voiding is not an option). Multiple catheters are in place while the healing occurs and are removed at about 2-3 weeks. At first intermittent cath may need to be done as often as every 2 hours to avoid stressing the suture lines, but generally good results would be to be able to cath every 4-5 hours with a capacity of 450-500 cc.

          Do a search on our forums using the word "augmentation" and you will find many previous discussions about this.

          Your friend needs to find out why his capacity is low, as if it is primarily the spasm and not the contracture of the bladder, Botox should be considered prior to this major surgery.


          (KLD)
          Hi Wise/KLD. Hope all is going well with you both and that the rats don't bite Wise too often. ;-)

          Now, I've gone straight past botox, didn't pass go, didn't collect $200, and have ended up
          on Bladder Augmentation Avenue. I am trying to understand what are the typical outcomes of this type of surgery through Pub Med and other journals but I am not finding enough info to my liking. I am concerned about early and late complication rates as I have read them to be as high as 44% (Glenn's urologic surgery By Sam D. Graham, James Francis Glenn, Thomas E. Keane; http://books.google.ca/books?id=AeZJ...ation+outcomes).

          For the community's use, is it even possible to fill in the following table? I know that every study is different, but can anyone draw any general conclusions about the outcomes of Bladder Augmentation?

          For example, early (x), late (y) and total (z) complications of Bladder Augmentation:

          - X%/Y%/z% stone formation
          - X%/Y%/z% bowel obstruction
          - X%/Y%/z% metabolic malabsorption
          - X%/Y%/z% cancer
          - X%/Y%/z% other (rupture, reservoir too small, etc).
          - X%/Y%/z% Worsening of bowel dysfunction (frequency, looser consistency, etc)
          - X%/Y%/z% other complications I don't know about to be added to the list


          Any info is much appreciated or even links will do!

          -K

          Comment


          • #6
            I had this done and more

            THIS IS A HUGE, painful, dangerous and really scary surgery for SCI patents It is a huge operation for normal persons... but with a SCI it is really as tough as you can get. I recently had this procedure and it nearly killed me. I seriously would never ever suggest it... only as a last resort to save life. It is nearly impossible to heal, because we cant move and when we do, we tear things up that we not intended to be stressed. It is so hard to heal and take of yourself. The patient need 100% constant care, absolutely cannot hold your head up by yourself, because of the huge incision and surgery! You cant even read a newspaper. It took 8 weeks of terrible terrible Neuro pain... caused my the surgery. The severity of the surgery made my normal level of Neuro pain absolutely go through the roof. I wanted to end it all many times during the ordeal. Just say no to this type of surgery.. it is HELL!
            Mike (Florida)

            Cant we get 1 do over?

            Comment


            • #7
              Originally posted by SCI-Nurse View Post
              Bladder capacity can be limited either because the bladder is contracted and shrunken, or because bladder spasms occur (instability) at a low capacity. With the latter, bladder injections with Botox would be the next step if oral medications cannot control the high pressures and spasms. If the bladder is actually contracted (more common if the person has used an indwelling catheter or other continuous drainage of the bladder for some time), then a major surgical procedure called a bladder augmentation (also called a clam-shell cystoplasty) may be recommended.

              This is a major surgery...I tell my patients it will feel like they were hit by a truck for about 7-10 days. A segment of large bowel (occasionally stomach is used instead) is separated from the colon (with the blood vessels intact) and fashioned into a sheet of tissue. The bladder is split lengthwise and the bowel segment is sewn in place like a patch. This makes the bladder larger, with lower pressures. When you come out of surgery, you have an NG tube down your nose (no eating for up to 7 days) and multiple catheters in the bladder and often in the ureters as well. There is a good sized abdominal incision to heal in addition to the augmented bladder sutures.

              Once it is healed, intermittent catheterization must be done (reflex voiding is not an option). Multiple catheters are in place while the healing occurs and are removed at about 2-3 weeks. At first intermittent cath may need to be done as often as every 2 hours to avoid stressing the suture lines, but generally good results would be to be able to cath every 4-5 hours with a capacity of 450-500 cc.

              Do a search on our forums using the word "augmentation" and you will find many previous discussions about this.

              (KLD)
              KLD, I have not heard of this surgery before, but I wonder why an illeal conduit, which I have, would not be preferable if you are going to do that kind of massive surgery. Changing a urostomy pouch every 4 days is very easy to deal with, and I have been infection free since 1970. Conduits seem less complicated.
              You will find a guide to preserving shoulder function @
              http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

              See my personal webpage @
              http://cccforum55.freehostia.com/

              Comment


              • #8
                Originally posted by mike bauer View Post
                THIS IS A HUGE, painful, dangerous and really scary surgery for SCI patents It is a huge operation for normal persons... but with a SCI it is really as tough as you can get. I recently had this procedure and it nearly killed me. I seriously would never ever suggest it... only as a last resort to save life. It is nearly impossible to heal, because we cant move and when we do, we tear things up that we not intended to be stressed. It is so hard to heal and take of yourself. The patient need 100% constant care, absolutely cannot hold your head up by yourself, because of the huge incision and surgery! You cant even read a newspaper. It took 8 weeks of terrible terrible Neuro pain... caused my the surgery. The severity of the surgery made my normal level of Neuro pain absolutely go through the roof. I wanted to end it all many times during the ordeal. Just say no to this type of surgery.. it is HELL!

                Oh dear. This is not what i needed to hear!

                I just chickened out of this surgery 2 months ago, but I know even though I hold 500mls easily that I have a high pressure bladder and will have to get something done within a year or so.

                I've been told I could have renal damage if I don't do something about it, but it's my call.

                The other option is a sphinctorotomy and that sounds awfull too!
                My last scans showed my kidneys were ok so I asked to postpone the op and have another urodynamics pressure test (next month), my last pressures were 100+
                I guess I'll have to bite the bullet, better make a will too!

                Comment


                • #9
                  Before you make any decisions, see what is going on with your urodynamics. Then I would encourage you to make sure that you think through all of your options, get your questons answered and speak to as many people who have had it as you can.

                  Then weigh your options before making any decisions.

                  CKF
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                  Comment


                  • #10
                    Originally posted by SCIfor55yrs. View Post
                    KLD, I have not heard of this surgery before, but I wonder why an illeal conduit, which I have, would not be preferable if you are going to do that kind of massive surgery. Changing a urostomy pouch every 4 days is very easy to deal with, and I have been infection free since 1970. Conduits seem less complicated.
                    SCI Nurse, what about SCIfor55yrs's question as an alternative?

                    In this great medical age why not use donor tissue of some kind instead of such butchery?

                    Comment


                    • #11
                      I had a bladder augmentation with a mitrofanoff almost one year ago. I am 58, 16+ years post, with a C4 inc. central cord sci injury. The surgery recovery was hell for about 10 days for me. Diarrhea, vomiting, mental confusion... it was terrible. After 2 weeks in the hospital, I spent 2 weeks in a skilled nursing facility, gaining strength to return home. By the end of my third week, though, I was quite ready to go home. Although there have been some obstacles to overcome, (uti, leaking at night, mucos) things are now running smooth. I am soooooo glad that I had the surgery because I am now 100% independent in self-cathing. I can go anywhere, for any amount of time without worrying about drinking too much or "who was going to help me cath." I knew it would be difficult, it was, but it's over.
                      For me, the price was worth the reward.
                      Karen M
                      C 3/4 inc. central cord
                      10/29/1992 - 18 years, but who counts?

                      Comment


                      • #12
                        Ileal conduit's are not without their problems either. It too is major surgery - and for many people, the fact that the urine goes into a bag is problematic. The bladder augmentation is major surgery with problems, but it is easier to manage for many people than the ileal conduit. It certainly wouldn't hurt to ask your doctor about this option.

                        CKF
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                        Comment


                        • #13
                          Originally posted by SCI-Nurse View Post
                          Ileal conduit's are not without their problems either. It too is major surgery - and for many people, the fact that the urine goes into a bag is problematic. The bladder augmentation is major surgery with problems, but it is easier to manage for many people than the ileal conduit. It certainly wouldn't hurt to ask your doctor about this option.

                          CKF
                          Somehow I missed this response, and I am a bit late replying.

                          Yes, as with any major abdominal surgery, there are risks. To some extent, these can be minimized by skilled, experienced surgeons. For example, bowel obstructions from adhesions or strictures, although infrequent, do sometimes occur. However, when your urological status and quality of life are only going to deteriorate without intervention, difficult choices have to be made. Urologists advocate intervention as quickly as possible to prevent further deterioration. On the other hand, sometimes we have to be driven to the point that we are so miserable we are pushed to a "cure me or kill me" mode before we act.

                          Regarding the conduit, it has been the most used procedure for urine diversion following bladder removal as part of bladder cancer treatment. Because of this, the expertise is more widespread among urologists and easier to access. At some major research centers, such as the Cleveland Clinic, they have started doing ileal conduiit construction and radical cystectomy together laparoscopically, reducing recovery time. Regrettably, because of our broken health care system, there are few hospitals where there is adequate nursing staff and SCI medicine support to care for a spinal cord injured person post-operatively. In my area, the odds of surviving without induced complications following this surgery are probably about the same as those for winning the Power Ball lottery.

                          I am not sure what the bag issue referred to is. Virtually every SCI I know who has had this procedure wears a small pouch connected to a leg bag, or bedside bag at night, and find them to be less trouble than condom caths.
                          You will find a guide to preserving shoulder function @
                          http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

                          See my personal webpage @
                          http://cccforum55.freehostia.com/

                          Comment


                          • #14
                            Originally posted by SCIfor55yrs. View Post
                            I am not sure what the bag issue referred to is. Virtually every SCI I know who has had this procedure wears a small pouch connected to a leg bag, or bedside bag at night, and find them to be less trouble than condom caths.
                            Those who have an augmentation and/or Mitrofanoff do not wear a bag at all. They do intermittent cath, and are dry in between. No need to wear a bag, appliance, etc.

                            Strictures between the conduit and ureters, kidney stones and cancer within the conduit are also significant risks with an ileal conduit.

                            (KLD)
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                            • #15
                              Have you asked your uro about Botox injections? My uro told me that he rarely does augmentations anymore, due to the fact that its a dangerous surgery and sometimes doesn't guarentee that you'll stop having accidents. He also told me that studies have shows an increase in bladder cancers 10 years post-surgery, as well as the risk of the augmented site rupturing. He said he only does augmentations as a last resort when everything else has not worked.

                              Recently, my uro put me on a medicine called Toviaz and I had another round of Botox injected in my bladder. Within 2 weeks, I was completely dry during the daytime (I still have accidents at night).

                              Jessie

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