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  • Bladder repair

    Had bladder removed in Oct of 06 been doing great for once in along time!
    But now I have to have the bladder fine tuned. Not looking forward for surgery again but just curious has anyone had just the tip of the bottom portion of their bladder stretched? Mine just didnt inflate all the way just my luck Just again curious?

  • #2

    Hey Countrygrl,

    So good to hear you're doing well. Another positive story which is great. I'm so happy that you are doing well and don't worry about the small repair. I'm sure it will go well. The worst is over and be a little more patient and things will be fine. Wishing you well and keep us posted.



    • #3
      It is not uncommon to have to go back get some revisions done. The bst part of it is that the all the big stuff has been done already so this should be a piece of cake! I guess I am not familiar exactly with what you mean by it didn't round out, but your surgeon know what needs to happen. How long to they expect you to be in the hospital for? Good luck! Judith


      • #4
        Originally posted by countrygrl
        Had bladder removed in Oct of 06 been doing great for once in along time!
        But now I have to have the bladder fine tuned. Not looking forward for surgery again but just curious has anyone had just the tip of the bottom portion of their bladder stretched? Mine just didnt inflate all the way just my luck Just again curious?
        Can you use the bathroom or do you need to use a bag?


        • #5
          can u help me?

          can you please explain to me what you mean by having your bladder removed? what exactly did they do and what do u do now? i don't understand. could u please explain it to me.
          thanks alot


          • #6
            The removal of a bladder is called cystectomy, and it is ONLY done as a last resort when nothing else works. There are several ways that they can do this or rather I should say the end result can be done in several ways. So the way they start is by cutting the ureters at the point where it joins the bladder. They are then either implanted into a peice of intestine that will become something called an Ileal Conduit or put into a new bladder that is an internal pouch made from bowel. Some doctors will also remove the urethra as well and some leave that in. IF you get an ileal conduit you will have an opening on your stomach called a stoma and it will be covered by something called an ostomy pouch/appliance that is made out plastic. This will be emptied by you whenever it fills up. If you get an internal pouch you will catheterize it several times a day to drain the urine that it holds. You can live a normal life without your bladder, in fact I had mine out when my children had just turned 3 and 5. I was able to do every thing I wanted to do and noone knows you do jnot have a bladder unless you choose to tell them. Judith


            • #7
              That is so great that you were doing well. Hopefully after fixing the problem you will do just as good.

              Sending hugs, Trishann


              • #8
                I hope everything goes well for you. Please keep us posted.
                'The will of God will never take you where the Grace of God will not protect you.'


                • #9
                  update on bladder repair

                  All is going ok just a few kinks that have occured and had to have them fixed since the surgery. Slow recovery but making it thru. The adjustment to meds is a challenge but still dont regret surgery. Thx for all prayers and support! I am praying for everyone on this board. Thx for everything. Hugs


                  • #10
                    Judith just wondering if you still have any problems with IC after bladder removal. Are you able to lead a happier life now without pain and diet restictions? Is there a worry in relation to kidney function now that your badder has been removed?


                    • #11
                      ? on bladder removal issues

                      Samantha,I too have had my bladder removed and so far theres only been 1 problem but a little surgery fixed it. The bottom portion of my bladder didnt round out and the Dr's fixed and I have had very good luck!No diet restrictions and I have dropped all meds except 1 and the is sanctura for spasms but i am cutting back because the spasms are getting better. So far no major pain that I used to have and life is slowly returning normal again.The Dr said there can and will be ups and downs but nothing like before they hope and so do I. Life before was the WORST nightmare ever!!!!!
                      SO if you and Dr are thinking about this surgery let it be your last option because it is a big surgery and change and along recovery but if its the only option like in my case then its all worth it. If any ?? just ask and I will try and answer them. Hugs


                      • #12
                        Samanthajane, I do not have any problems with IC now that I no longer have my bladder or urethra. I never had bladder pain when I had my bladder, I did have pains in my urethra, but since they took that out, immeadiately after the surgery that pain was gone for good. I had my bladder out over 21 years ago, this was before there was an IC diet or before there were many of the things that now have today in the way of treatments- Elmiron was not even available. One BIG change for me has been to be able to drink as much fluid as I want- I love being able to guzzle water when I am really thirsty, something I never dared to do when I had my bladder. Once I had the surgery I was able to lead and still live the type of life I want to. I was able to raise my two sons, work and do just about anything. I work part time and do lots of gardening, as well go hiking, fishing, etc. As for kidney problems, I get my kidney function checked on a regular basis, so far no problems. I ahve an internal pouch which has valves built into it to protect my kidneys from urine refluxing back into them. I would do it all over again, because it gave me my life back.


                        • #13

                          I wanted to add my experience. I don't have IC either. I've had my bladder out since 2002. The diet part is wonderful. I can eat and drink everything that I could not when I had IC. My life is much happier now. I have some pain related to two other problems PNE and Vestibulodynia. The Kidneys are well. I have not had any problems or infections.
                          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                          I also have some journals of my journeys, past and some present at:

                          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.