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  • The die is cast

    I went to the uro (Dr. E) today. Who ever took my call wrote down that I wanted to talk about Interstim. When the nurse read it she was confused - because I have an interstim. I told her I was talking about Bladder removal. She thought I was talking about Interstim removal. When Dr. E came in, I said I had some questions. #1 How long would I be in the hospital. He says, "I'll take it out and you can go home that day" My eyebrows shot up and I said - to take out my bladder???? Well, we got things straight. He says there's nothing else I can do. The interstim is working but when the bladder is the size of a teacup, it can't do anymore. He said there is no way it will stretch anymore, so... come August, I will be looking at surgery. I can't go any sooner because of other commitments - but if I could go tomorrow I sure would. I've had it. I'm feeling very relieved to have made the decision.
    Keep me in prayer.
    Maggie

  • #2
    Definitely keeping you in prayer. Sometimes all the stuff leading up to the actual decision is the worst, huh? Glad you feel settled in your decision.
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

    Comment


    • #3
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN 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.

      Comment


      • #4
        Keeping you in my prayers
        Miss Bessie

        Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

        Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

        Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

        Comment


        • #5
          Making the decision is one of the hardest parts --- the other hard part is waiting for the procedure. It sounds like you are comfortable with your decision. Be sure to remind me as the time gets closer so I can say some special prayers for you on your surgery day.

          Warm hugs,
          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          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: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          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.
          [3MG]

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

          Comment


          • #6
            you will certainly be in my prayers!
            Faith is not believing God can; Faith is believing God will!

            Comment


            • #7
              Maggie I will for sure keep you in my prayers.

              One of the hardest decision you will ever have to make in your life, you made. And in your post I can tell you are relieve, happy and glad that you and your doctor agree and that this is what is best for you. One thing about the InterStim, which we all know, is that it will not help rebuild or correct the problems of IC.

              Best of luck to you and I hope August gets here before you know it. HUGS to you.
              God grant me the serinity to withstand the days ahead!!!

              My myspace link...
              www.myspace.com/patricia_luvs_matt


              Patricia

              In Memory of My Father (Lawerence) 1/25/2007

              Procedures:
              Interstim Sept 2001
              1st InterStim Removal May 2005
              2nd Interstim Implanted May 2005
              2nd InterStim Removed March 2007
              Hysterectomy 1999
              Tubes Tied 1997
              C-Section 1996


              Me and my kids


              Taylor (my daughter) Me and my daughter My son Cody and Taylor

              Comment


              • #8
                I so hope this is the answer for you... I'm glad you are through the decision making process, though. I know that deciding to do the Interstim was hard enough for me and took me several months of deep thought and research... I imagine deciding on a more radical approach like bladder removal must be all the harder!!!

                I know your surgery isn't for a while, but I'm wishing you the best of luck as you prepare... and, you have a great doc He put my 'Stim in and did a wonderful job...
                ****
                Jen

                *Diagnosed with severe IC in 2004
                *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                **I am not a medical authority nor do I offer definitive medical advice. 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.

                Comment


                • #9
                  Maggie, I know this is a hard decision but I do know that sometimes you got to do what is necessary. Like Donna said, let us know when you are having the surgery so we can be praying for you. I am glad you are sure in what you want to do because this is part of the battle. I think that is a battle in itself and conquering that I think you can conquer anything.

                  Please remember to let us know,
                  Hugs, Trishann

                  Comment


                  • #10
                    Keeping you in my prayers - I hope you will soon have a pain-free life!

                    Blessings,
                    Lori

                    Comment


                    • #11
                      Oh Maggie...I most defiantly will be praying for you. I also hope this will be the answer.
                      Sharon

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

                      Where I can be found most days.



                      Link to the ICN Patient Handbook:
                      http://www.ic-network.com/handbook/

                      Link to the IC Diet:
                      http://www.ic-network.com/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.

                      Comment


                      • #12
                        I hope that this decision brings you the relief you deserve. You do so much for others, it's definately time to take care of yourself. Please let us know how you're doing. I have seen Dr. Evans myself and know you're in great hands with him.



                        Thinking of you, Sandy
                        *IC-- Summer 2004; PFD--October 2005
                        *Fibro--Fall 2000; CFS-- Fall 2000
                        *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                        Total Abdominal Hysterectomy--adenomyosis--9\08

                        04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                        Comment


                        • #13
                          As you know Maggie, I am here for you and ready to answer your questions and be of any help that you need. I know how hard that decision os to come to having to make myself. Once it is all over and you are healed, you may find like others, that you wonder why you waited so long!I am keeping you in my thoughts. Judith

                          Comment


                          • #14
                            Maggie

                            Maggie,

                            If you need anything, we are all here for you! I had my bladder taken out in 2002 and then reconstructed in 2006.

                            Kara
                            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:
                            http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

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

                            Comment


                            • #15
                              I am sure that everyone will keep you in their thoughts and prayers. You seem very confident in your decision and I wish you all the best. Just remember that everything happens for a reason!

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