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  • Types of bladder surgery

    I have been advised by my uro that I have 3 options for surgery are;
    1. Cystectomy
    2. Cystoplasty
    3.Otoaugumentation.

    Complications I have to this are I have been neutropaenic for 5 years and I have Chron's disease, I also have chronic IGA glomerularnephritis, hydronephrosis, already had a urethrectomy.

    Just wondered how others have got on and if anyone has had any of the above surgeries and could advise me on what additionally I should consider?

    Many thanks

    Kip




  • #2
    First I had a S2 Nerve Block. Where they go in the Lower Part of My Back and cut the 2 Main Nerves to the Bladder that Causces Pain. That did not work

    Next I had 2 Cecum-cysto Plastic Bladers Made part Bowel and Part Bladder. Did not work. I was self cathing every 15 Minuites.

    Nest Made My Ileo-conduit. But Left the Ureatha In. Did Not work

    Had to Go BACK a Year Later and remove the Ureatha Cause is was forming another Bladder,

    2 years Later I had a Revision done cause of a Blockage in the Loop

    A year Later another revision later cause of Blockage

    @ years later another revision cause of Blockage


    2004 I had My Right Kidney removed.

    1994 I had a Hysterectomy

    2001 Had some Lung Surgery done.

    2005 Had a Double J stent in and we change that every six Months. Cause the Left Urter is Blocked.

    DebbieD

    Comment


    • #3
      Hi Kip.....I had my bladder and urethra removed in Dec.....to make the whole story easier please read my story ( Link at the bottom of my post) than add to that that I went to Virginia Mason hospital in Seattle 2 weeks ago for a percutaneous nephrostomy procedure...

      http://mhriweb.org/patient_informati..._CONTAINER.htm


      I will have to have this tube in my back and leg bag until mid July and then fly back to L.A from Seattle where my dr will try to remove the blockage endoscopitly and if that doesn't work I will have to have another major surgery 3 days later where I will stay in the hospital for at least a week....

      ......even with all of this I would still have the surgery again in a second..I have no pain, frequency or urgency....I cath to empty my pouch every 5 hours....I did not make this choice lightly,,,this is a HUGE surgery, but I had suffered with I.C. for 40 years....good luck with whatever path you choose...
      After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!

      Comment


      • #4
        Hi Kip,
        My surgeries were as follows:
        1. Augmentation cystoplasty- did not work since they left the base of the bladder the IC then spread to the newly augmented section, so 8 months later had
        2.Cystectomy with an ileal conduit- they also removed my urethra(had it for 6 years)
        3. I had a revision done on my stoma as it started to close off- called stenosis (this was done after 5 years)
        4.Had it converted to an internal urostomy pouch similar to an Indiana pouch which I catheterize several times a day- I have had this now for 13 1/2 years and LOVE IT!
        I have had other surgeries as well since getting my bladder out, such as gall bladder removal, hysterectomy, 2 surgeries for bowel obstructions, and angioplasty for blood clots in my chest. Some of these are related to my badder removal others were not
        Knowing what I know now if I had to do it again I would opt for the internal pouch right off the bat as they create valves to help protect the kidneys so that there will be no reflux. This might be the best for you since you are having kidney trouble. Talk this option over with your surgeon. Judith

        Comment


        • #5
          Thanks for all your replies, IC isn't the main problem I have with my bladder, it is severely trebaculated, overactive, as well as obstructed so I currently have to self catheterise between 15-20 times a day. I experience severe bladder spasms.

          Currently I am in retention of urine most days as the spasms have become so severe it has been impossible to insert a catheter,and was diagnosed with vulvodynia last week and am finding it impossible to sit down as to add to this the skin in that area has completely broken down, however I have been doing lots of things to take my mind of the pain, gardening and decorating.

          What is an indiana pouch? and where do they put the anastamosis for you to catheterise?

          I have been ruled out for the spinal block as it has a poor success rate in the UK and the complications far outweigh the benefits for me.

          i guess having to have a lot of urological procedures/surgeries already unfortunately because of my neutrapaenia and anaemia these have given me the most significant problems post operatively as I have ended up with life threatening infections following each surgery.

          Has anyone developed problems with anaemia or recurrent infections following their surgery involving their bowel?

          Comment


          • #6
            Hi IMUSTPEE,

            I tried your link but it is currently unavailable.

            Kip

            Comment


            • #7
              Sister

              Originally posted by Imustpee View Post
              Hi Kip.....I had my bladder and urethra removed in Dec.....to make the whole story easier please read my story ( Link at the bottom of my post) than add to that that I went to Virginia Mason hospital in Seattle 2 weeks ago for a percutaneous nephrostomy procedure...

              http://mhriweb.org/patient_informati..._CONTAINER.htm


              I will have to have this tube in my back and leg bag until mid July and then fly back to L.A from Seattle where my dr will try to remove the blockage endoscopitly and if that doesn't work I will have to have another major surgery 3 days later where I will stay in the hospital for at least a week....

              ......even with all of this I would still have the surgery again in a second..I have no pain, frequency or urgency....I cath to empty my pouch every 5 hours....I did not make this choice lightly,,,this is a HUGE surgery, but I had suffered with I.C. for 40 years....good luck with whatever path you choose...
              OMG when I read this it frightens me. They told my sister last year that she was having reflux and was seriouly looking to have surgery. I want the best procedure done the first time....I want the Dr to get it right the first time. They spoke about the leaving the pouch of the bladder and rebuilding ..I thought to myself then the bladder is diseased for heaven sakes why are we rebuilding on sinking sand???? Please anybody..everybody tell me the route to go....outside pouch...inside pouch...what roll does this play on her kidney since I was told the reflux could blow out her kidneys...in the long hail are we going to be need a recipent for a kidney transplant....anyone know these answers...It's my only sister and I have to know the best info I can get and be real with me...THANK GOD for this sight...KKG

              Comment


              • #8
                Did all these other problems generate from IC or have you always had some health issues? First I thought all I needed to be concerned with was a bladder extration and now I'm reading urethrectomoy...what is that all about and what SX occurred to know this procedure needed to happen? I'm sorry I'm so stupied with all this new stuff but I have to learn from you folks so I don't make to many mistakes along the way... Anything at all you can tell me will be so appreciated. KKG It is a disease from hell and it's driving my sister crazy.

                Thank you do much KKG




                [/QUOTE][/B][/SIZE]














                [QUOTE=Kip;239219]I have been advised by my uro that I have 3 options for surgery are;
                1. Cystectomy
                2. Cystoplasty
                3.Otoaugumentation.

                Complications I have to this are I have been neutropaenic for 5 years and I have Chron's disease, I also have chronic IGA glomerularnephritis, hydronephrosis, already had a urethrectomy.

                Just wondered how others have got on and if anyone has had any of the above surgeries and could advise me on what additionally I should consider?

                Many thanks

                Kip


                [SIZE="5"][B]Kip,

                Comment


                • #9
                  KKG,
                  First of all, this post was from 3 years ago. The person who wrote about having the tube in her back etc, is fine now, in fact she went back to school and now works in the medical field. Hopefully she will respond and tell you herself.
                  As for the answers to your questions, I am not a doctor, BUT I can tell that the rate of recurrence in the new pouch/bladder if any part of the bladder is still left in is very high. That is what happened to me and others that I have known over the years. If it was me, I would go for the internal pouch as when they create it they make valves so that there is no reflux to the kidneys. When they do an ileal conduit, that is where you wear an external pouch, there is reflux to the kidneys. So since your sister already has reflux the best thing would be to go with the internal, and maybe her kidneys will not have any more damage. Her doctor is the best one to advise her on that.
                  As for having her urethra out, I would ask them to do that since she no longer will have a bladder why does she need the urethra? I had mine taken out when they took out my bladder. Many patients have to go back at a later date and have the urethra taken out when they leave it in, because of continuing symptoms such as pain, etc. How old is your sister and where is she going to have this done? I want to stress that everyone is different and not everyonme has the same problems or any problems after surgery. I can tell you that the majority of people are very happy with the outcome.

                  Comment


                  • #10
                    a list of what I am dealing with;
                    Incontinence- around 1997, along with frequency, and urge
                    FMS-1992
                    Cervical Leep- 1998 for pre-cancer
                    IC- 2001 with hunners ulcers, scars, shrinkage 400ml last hydro
                    IBS- two operations to fix posterior repairs and scar tissue 2002 and 2009
                    pancreatitius-2010
                    POP- in 2001-2002 and all failed in 2004
                    Bladder tack, burch, sling 2002 " " failed in 2004
                    ovarian cyst (pair size removed) endometrosis, and fibroid removed-2000
                    THA-(with a partial bilateral) still have oves and tubes 2002
                    Kidney- stone 5-6 in 2010
                    CFS-
                    CPP-
                    Cholesterol problems- inherited
                    I think the above is everything.

                    Comment


                    • #11
                      I want to post about my doctor appointment and Interstim implant.

                      I have been put on a 3 month waiting list for a trial Interstim. The specialist I saw tells me that not only will it help with my IC pain, he said it would help with my chronic pelvic pain, my back pain and help my bowels. He said i am a good candidate for the device.

                      The doctor at the Pelvic Floor Center in Minneapolis tells me basically I have nerves that are miss-firing and they are sending messages of pain to my brain. He says that these nerves some how start sending the wrong message.

                      I have PFD and CPP, my exam hurt but went fine.

                      I do not want to wait the 3 months if it will help me with all of these areas of pain.

                      The doctor tells me my Burch or what he called 'a bladder vault suspension' is still intact, he believes my bladder tack is also holding.. He doesnt want to go in and operate or remove the scar tissue. He says i am at the age where i should start menopause so when that happens the endometrosis will stop growing.

                      This doctor is going to try to set up some PFD pelvic floor PT : ) I live in Rural ND so this part may be difficult to get a PT with pelvic floor experience to come here. Diagnosed with PFD on 5/25/12.

                      I also had a bladder scope and the Dr. gave me some peridium s.p. to numb the bladder and an Rx of Tramadol...it seems to help some.

                      Comment


                      • #12
                        Hi I know this is a old post but can you tell me why they took your kidney, how the other one is and how you are overall?
                        Thanks
                        Melanie
                        I am blessed to have an Indiana Pouch now
                        IC since childhood, finally diagnosed at 31 yo
                        PFD/Pelvic Pain,SI joint and LBP
                        Low Back Pain s/p spinal fusion at 19 with more nastiness in back
                        Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
                        Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
                        Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
                        Hysterectomy 2/3/12 w one ovary removed
                        Dry Eyes
                        L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
                        Still have issues, still take meds.

                        I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
                        Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:

                        Comment


                        • #13
                          I must pee....wondering how you are doing now.
                          Hi-
                          I hope you are doing well. I was wondering what complications you have had along the way. I am 20 mo post op after gihugic complications and just a bit freaked right now...like worried the other shoe is going to drop. Somedays I won'der what I did in a "OMG" sort of way but I don't regret it. i have 2 little girls and am in this phase of being freaked for their future. If you could share a little of your story it would help a bit. Thanks
                          melanie
                          I am blessed to have an Indiana Pouch now
                          IC since childhood, finally diagnosed at 31 yo
                          PFD/Pelvic Pain,SI joint and LBP
                          Low Back Pain s/p spinal fusion at 19 with more nastiness in back
                          Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
                          Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
                          Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
                          Hysterectomy 2/3/12 w one ovary removed
                          Dry Eyes
                          L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
                          Still have issues, still take meds.

                          I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
                          Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:

                          Comment

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