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My doctors say I need my Bladder removed

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  • My doctors say I need my Bladder removed

    My bowel is getting into my bladder because the protective coating is nearly gone. Also I have a 2cc under general An. bladder and it constantly spasming. I wet my self all day every day even stretching does not help I like to chat with some one who had there removed.
    Life is what you Make It .By being kind to every one and all creatures your life will be more pleasant. Live your life for GOD and if it were the last day you were alive becausse it maybe.

  • #2
    ((((((((((((((Katherine))))))))))))))) hopefully whith having your bladder removed it will give you a better quality of life.. I am sure the gals will be a great help to you.. know we are here for you.
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      Sending you big hugs Katherine - I am with Tigger - I hope and can only imagine it will improve your quality of life!!!

      BIG hugs,
      How do you eat an elephant? One bite at a time...

      Harry arrived 2/23/09!

      *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      IC Diet Cheat Sheet:

      IC dx'd Nov 2004
      Lymphocytic Colitis dx'd July 2005
      Possible IBS
      Current IC Meds
      Vistaril 25mg in the evening
      Previous IC Meds taken:
      Cystoprotek - 2 caps 2x's a day
      Elmiron, 100mg 3x's a day
      Ditropan, 5 mg 3x's a day
      Wellbutrin 150mg 2x's a day for Anxiety/IBS
      Pepcid 40mg a day for GERD
      Zytrec for Nasal Allergies
      Align Probiotic daily for IBS


      • #4

        I'm so sorry to hear that you are having such a crappy time. My bladder spasms all the time too. I go next month for my pre-op tests to have my bladder removed also. I'm praying for a better quality of life for us both! I've decided to have the Indiana pouch if my large intestine is good enough. There are lots of women here who have gone through the surgery and that have been so helpful to me!

        God Bless you and your faimily on this Easter Day and all year too!

        You are on my prayer list!

        Serenity isn't freedom from the's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....


        • #5
          Wow so sorry Katherine that really stink. I can't imagine 2cc's that's like 3 drops from a medine dropper. Mine is 70cc's and it is a pain in the toot. Hope all goes well.


          • #6
            I'm sure you will hear from others who have had their bladders removed. Judith, who is the Moderator for the Bladder Removal board, has been without hers for years and will be an excellent resource for you.

            Stay safe

            Elmiron Eye Disease Information Center -
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            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help:


            Diet list:

            AUA Guidelines:

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Anyone who says something is foolproof hasn't met a determined fool


            • #7
              With that much damage, and that small of a capacity, I cannot imagine how much you have been suffering so far! I agree that you are bound to feel dramatically better after this surgery. Though it will be rough going for a while, you are sure to benefit from it. I hope that you are at peace with the decision and that your surgery and recovery will go smoothly.

              I agree that there are many here who are very knowledgable about bladder removal and I am certain they will provide you with invaluable information and support. Though I can't help you out with information, I will be here supporting you and praying for you.

              Good luck on your surgery! I hope that we will be reading about you soon on the "Success Stories" forums.

              Sending hugs,


              • #8
                Katherine...I don't have any sage wisdom on this, but I wanted to let you know that, if this is what you decide on doing, we are here for you and will support you.

                Sending you lots of gentle (((((((((((hugs)))))))))).

                Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                Where I can be found most days.

                Link to the ICN Patient Handbook:

                Link to the IC Diet:

                IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


                • #9
                  I had my bladder out over 21 years ago and have had most of the procedures done on it. So I would be more than happy to answer any questions you may have. I can tell you that I have been able to lead a normal life, raised two sons, been married 29 years this month, worked and done just about everything I have wanted to do. If anything it has given me the opportunity to live life. I do not regret having it done. For most people once they are healed from the surgery they tend to be pretty happy with it.So ask anything. I am here! Judith


                  • #10
                    I've had my bladder removed in 2002 and then reconstructed in 2006 to make an Indiana Pouch and remove my urethra. The 2nd time was a lot easier than the first time. If you have any questions feel free to PM Me anytime.

                    Best Wishes,

                    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.


                    • #11
                      Katherine, I am ready sorry that you have to go through it, hopefully the surgery will improve your life. I know this must be a battle of the mind of having to make that decision but I hope some way you will find the peace in whatever decision you make.

                      Just sending hugs and prayers, Trishann


                      • #12

                        I do not have any answers for you, but I sympathize with your pain and am hopeful for a great future ahead for you. Sending you prayers on this lovely Easter day.


                        • #13

                          Diagnosed October 2006
                          Monthly installations


                          • #14

                            I believe that your health will be much, much better and your quality of life. I will pray for you
                            not yet dx with ic-diagnosing myself as of aug 2006
                            diagnosed ic-october 5 2006(huh just what I thought)

                            cod liver oil (for vitamins a and d)
                            bladder is not getting worse but maybe better
                            diagnosed ibs-september 27, 2006
                            don't know if it's ibs or some other underlining condition. hair loss, weight loss, constipation
                            all this even though I eat.
                            Mercury toxicity with Candida Albicans
                            Realy toxic and sick
                            Dental almagams removal and chelation for heavy metal toxins and candida cleansing as soon as fillings are out
                            had catscan, ultrasound, colonoscopy
                            Matthew 21 verse 22: jesus quotes"and all the things you ask in prayer, having faith, you will receive."

                            I eat to live, not live to eat.