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Should I go for it? Bladder Removal Laparscopically

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  • Should I go for it? Bladder Removal Laparscopically

    H,
    After over 10 years with severe IC I want to go for a bladder removal! I have considered it before and been steered away. I know how terrible my body feels day to day though and the MDs only know what I tell them of this. I have read the threads on here and I still don't know if I am informed enough to make my decision. I am very, very grateful for those who have posted about their experiences though! My new MD is Dr. Comiter at Stanford. Has anyone else gone to him for this? He said he has done 18 cystectomy surgeries for IC patients. I finally got some photos of my bladder at my 3rd cystoscopy. The first 2 were long ago (one with capsacian.) I did get a little vaginal cyst after this last hydro/cystoscopy (due to a blocked gland). I mention it only because I think this could help someone, so they aren't freaking out like I was when I went into urgent care. I was actually afraid it could be another lasting problem, even though I have been monogamous for over 10 years.
    I had a dream last night I was in surgery and a lot of pain. I really wish it was over and I was recovering. I am thinking of recovering at my mom's house but it would be very hard to be away from my boy (now 7) and my husband. I just don't think my husband could give me the care I would need. He keeps busy with work and we do definitely need the income.
    Looking for any advise and/or thoughts. I do work full time! I don't know how long recovery would take.

    Thank you! This site has helped me a lot over the years. I feel like I sought it out more in the beginning stages. Now, this surgery could be the beginning of my answer! I have tried about 100 treatments, or that's what it feels like. I have not been helped enough by the diet and it's very tough to follow. I do not have coffee, soda, juice, tomato, citrus and a few other things.

    What helps you?
    How have you coped with the feeling of loss? I'm sure it must be there for those who have lost their bladders. Mourning something that has been so horrendous does seem odd but there is always the thought that a cure could come along and then you'd be compromised.
    Does anyone believe a cure could be found in the next 20 years?

    Thanks! Sorry a little long and scattered. I will see if I get a date for surgery at my next appointment on the 21st!

  • #2
    Re: Should I go for it? Bladder Removal Laparscopically

    I don't know if you have more pain than frequency, but did you try the interstim?

    Also, I have heard of people successfully going to California for stem cells. I don't know a lot about it, but it had positive results. Though it is very expensive.

    I am sorry it has come to this. I wish there was more dedicated research and time being put into finding a solution to IC instead of having to have people remove vital organs.
    ----
    Diagnosed Nov 14 via hydro with cysto
    --
    Tried and Didn't work:
    -Hydrodistension
    -Oxybutinin, Troviaz, Vesicare, Cyrotec, Trumadol, cimedidine, myrbetriq, sancuria, imetidine
    -Tried DMSO instill twice and could not hold it for more than 15 min. Put me in 10/10 pain for days.
    -Tried Elmiron
    -Pelvic floor therapy for 2 months Returned this month
    -Interstim Advanced Trial, Pudendal Interstim Trial
    -Gabapentin cream for VV
    - Botox in the pelvic floor & Bladder, Pudendal Nerve Block

    Tried and did work:
    elavil for pain only 25mg a night
    Trying: psychological therapy, doxepin 25mg at night
    Diagnosed:
    PFD, Vulvar vestibulitis, IC

    Comment


    • #3
      Re: Should I go for it? Bladder Removal Laparscopically

      I would absolutely try every other option before considering cystectomy. Have you read the AUA Guidelines for Treatment? You'll find a link in my signature. You might see something there that you haven't tried yet.

      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


      • #4
        Re: Should I go for it? Bladder Removal Laparscopically

        Thank you for the feedback! I have not had an interstim or botox. I was told that botox didn't have many positive results by my local uro who had tried it out on some patients. It was also not covered by insurance at the time it came up. I do have an electostimulator unit just not implanted. It does help some. Most of my issue is pain although I do have urgency and I have to run to the bathroom every 10 minutes at times. I especially go a lot before bed. I'll write more later. Thanks again! Gotta get to work.

        Comment


        • #5
          Re: Should I go for it? Bladder Removal Laparscopically

          Have you tried going to a pain clinic?
          ----
          Diagnosed Nov 14 via hydro with cysto
          --
          Tried and Didn't work:
          -Hydrodistension
          -Oxybutinin, Troviaz, Vesicare, Cyrotec, Trumadol, cimedidine, myrbetriq, sancuria, imetidine
          -Tried DMSO instill twice and could not hold it for more than 15 min. Put me in 10/10 pain for days.
          -Tried Elmiron
          -Pelvic floor therapy for 2 months Returned this month
          -Interstim Advanced Trial, Pudendal Interstim Trial
          -Gabapentin cream for VV
          - Botox in the pelvic floor & Bladder, Pudendal Nerve Block

          Tried and did work:
          elavil for pain only 25mg a night
          Trying: psychological therapy, doxepin 25mg at night
          Diagnosed:
          PFD, Vulvar vestibulitis, IC

          Comment


          • #6
            Re: Should I go for it? Bladder Removal Laparscopically

            So sorry to hear about your pain and struggle with IC. How does your doctor feel about you having a cystectomy? Does he think your bladder is salvageable? If so, I would try absolutely every treatment available, even if you think it won't work. The reason I say this is because I am currently at the hospital recovering from my laparoscopic cystectomy/Indiana pouch (I'm on day 3). It has been a tough recovery thus far and I was actually beginning to regret it for a bit, but I kept telling myself that it was the only option I had left... that I had tried everything I could... that I couldn't live with my bladder the way it was. Being able to tell myself this is the only thing that has kept me together these last few days. So try everything, even if it's just to reassure yourself later. This surgery is HUGE!

            Comment


            • #7
              Re: Should I go for it? Bladder Removal Laparscopically

              Originally posted by glorilla89 View Post
              So sorry to hear about your pain and struggle with IC. How does your doctor feel about you having a cystectomy? Does he think your bladder is salvageable? If so, I would try absolutely every treatment available, even if you think it won't work. The reason I say this is because I am currently at the hospital recovering from my laparoscopic cystectomy/Indiana pouch (I'm on day 3). It has been a tough recovery thus far and I was actually beginning to regret it for a bit, but I kept telling myself that it was the only option I had left... that I had tried everything I could... that I couldn't live with my bladder the way it was. Being able to tell myself this is the only thing that has kept me together these last few days. So try everything, even if it's just to reassure yourself later. This surgery is HUGE!
              I just wanted to send along some get well wishes for your recovery from surgery. Please let us know how you are doing.

              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


              • #8
                Re: Should I go for it? Bladder Removal Laparscopically

                Hi Glorilla89, I am sorry to hear that! I wish you all the best in your recovery!!! Thank you for posting that. I am sure you did everything you could. Please keep me updated on your recovery if you can. How are you now? How many days post surgery are you now? I think regret is normal part of the process and that is a scary fact. You may regret it now but it's too soon to know the final results. I am proud of you that you were so brave and stood up to get a surgery that could turn your life around. I hope it does!!
                I did go to a pain clinic but my local uro already had me on pain killers and the pain clinic did not see any reason to change what I am on. I am now going to do a trial interstim. I need to gain more knowledge about this. I never researched it as much as other options because my main symptom in pain, not frequency. Can I go in water? Can I still get a laser treatment w/ accupuncture that the pain clinic recommended?
                As for the question as to whether the MD thinks my bladder is salvagable. I guess that is a yes but my pain in sooooo terrible. I want in out. I feel like if I do not ever get it I will never know if I could have had an improved life. I am fully aware of phantom pain but for some reason I have felt, for years, that if I just removed to source of the pain I'd feel better. I might be wrong but that is my gut feeling.
                I am mainly doing the interstim with very little faith that it will help enough to improve my life to a "normal" or decent quality. I do feel it will help my husband, my new uro, my family, and maybe even a little bit myself come to terms with the fact that I may need a more drastic surgery. However, I am already mainly there in terms of accepting that my best bet could be to remove the bladder. It's a ruling out phase. My MD said he wouldn't want to disfigure a young woman without trying everything else first. I think if he knew just how miserable this is he might be more willing.
                I am disappointed. It's a lot of time & $ testing out everything! If I had a cystectomy date right now, I might be feeling a little more like there was a light at the end of the tunnel. I will be pursuing the cystectomy again in the interstim fails. Hoping for a miracle! That you Donna and everyone else!
                Donna you have been there for me from the start in 2006 when I joined I've posted 90+ Times and you have always given good, sensible advice, whether it's to seek professional help or just to offer encouragement and support. I am so thankful!

                Comment


                • #9
                  Re: Should I go for it? Bladder Removal Laparscopically

                  I had my bladder removed 10 months ago. I struggled for 41 years. I also had retention. I had chosen the outside bag also known as the ileal conduit. I have had rare complications such as;

                  1) My stoma sunk into a skin fold, a "well" and is flush with my skin. What this means is that I leak so much that my urostomy supplies come to 4k a month. I have been to the stoma nurse 15 times. All different types of products have been tried and nothing works. Right now I am changing pouches anywhere from 2-5 times per day, depending. (Normal is a few days to once per week).

                  2) I still feel like I have to pee. It's not as bad as IC. The "gotta go" feeling is now located near my pubic bone. I did pelvic floor phsyical therapy and it was discovered that my bowels have moved down where my bladder used to be. So anytime bowels move down the pipes, it presses on my frontal nerves. I take Gabapentin 3x per day which takes the edge off. I am also using a very expensive TENS unit provided by my physical therapist and vaginal valium.

                  3) I still have the burning. It's right where my urethra used to be and no one knows why. Tremadol is the only medication that takes it away.

                  4) My urostomy pouch doesn't hold much (300 cc's approx) and I am still in the bathroom every hour emptying. I can choose to hook a leg bag up to it but I honestly hate doing that because of the buldge and weight in my pants.

                  5) It requires a lot of cleaning such as cleaning the bedside jug or bag or other things.

                  6) My skin is always raw and requires delicate care.

                  7) Medicare doesn't always pay for all the products I need such as adhesive remover or other items. They only allow a certain amount which never is enough because of all the leakage I have. I am currently spending approximately $100 a month on urostomy items I need because Medicare won't cover it. My appeals have been denied.

                  8) I still loose sleep because of the leaks and changing bed sheets at night.

                  I would still do the surgery again in spite of all this because the pain before felt like a the weight of a house sitting on it, with only 25cc's and I no longer have that feeling. There really was no other choice for me because my bladder was smaller than a walnut and was not expanding. Two urologists think it never grew past the age of size years old. My urethra was also the size of a 6 year old. The condition I had was so rare, there isn't a name for it. But it also had IC. If I were in your shoes, I would seek the internal bladder known as the Indiana pouch. I wish I had qualified for that, but I was not a candidate because of all my severe scar tissue. Good luck!

                  Comment


                  • #10
                    Re: Should I go for it? Bladder Removal Laparscopically

                    I think you still should try Botox first. I am also in German forum and so many people say so good things about it! It is supposed to be tried before. Like last post is telling: actually the problem can be not the bladder itself, but also all the area around, and the pain stays, even if bladder is out, so it is sometimes not worth it.

                    And if it is pain: did you try Uracyst instills? It has been a miracle at some cases, and I suggest to try this and Botox first, if you did not try yet.

                    Comment


                    • #11
                      Re: Should I go for it? Bladder Removal Laparscopically

                      Thank you Trei! Wow, that is a very unfortunate circumstance. Were you told that, that could happen? Is there anything that they could do to help it to be more prominent? If so, I'm sure you would be on top of that. Do you need to be on painkillers all the time? Do you get any help with your care? I want to start a list of pros and cons about experiences I have heard. It can be hard to find information on this. I asked a nurse if I could talk to someone who had the surgery done. She jumped all over me saying that it's a breach of legal code etc. I meant with their permission of course. I have considered a cystectomy ever since the 1st year I was diagnosed 11 years ago. I have a lot of pain! The painkillers only help so much.

                      Finances have been a big worry for me in all of this as well! I'm so sorry to hear it's tough for you. I had some changes to my insurance and I am waiting for my new insurance cards. My work actually said that a lot of people are waiting because there were so many changes on Dec. 1. My new uro recommended I get a TENS before a bladder removal to exhaust all the possibilities. I had it scheduled in Nov but I canceled do to the insurance thing. I will reschedule sometime soon. I have been in pain a lot in the meantime. I'm not too happy with how things have happened but maybe I'll get my chance to have a surgery which will actually be helpful sometime. I have wondered how I would have faired if I had gotten my bladder removed at 24 of 25. I think I would have recovered nicely then because I was in such great health otherwise. Also, it's been super hard not having support because people generally do not understand. I guess you can only go forward not back so it's important to make the best of things.
                      I hope your situation improves! Happy new year! Keep in touch with your progress.

                      Comment


                      • #12
                        Re: Should I go for it? Bladder Removal Laparscopically

                        Hi ABliske & Donna,
                        Sorry for the slow response... I haven't logged on since the surgery . Thank you for all of your kind words! I'm almost 8 months post-op now and let me just say, WOW! It has changed my life in ways I never could have imagined. The recovery was tough and I had a few complications (recurrent infections, ureteral obstruction and leakage), but it's been well worth it.
                        Have you made a decision on the surgery yet ABliske??!

                        Comment


                        • #13
                          Re: Should I go for it? Bladder Removal Laparscopically

                          Originally posted by glorilla89 View Post
                          Hi ABliske & Donna,
                          Sorry for the slow response... I haven't logged on since the surgery . Thank you for all of your kind words! I'm almost 8 months post-op now and let me just say, WOW! It has changed my life in ways I never could have imagined. The recovery was tough and I had a few complications (recurrent infections, ureteral obstruction and leakage), but it's been well worth it.
                          Have you made a decision on the surgery yet ABliske??!
                          Thank you for updating us. I'm so glad this is working out for you.

                          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


                          • #14
                            Re: Should I go for it? Bladder Removal Laparscopically

                            I didn't see my response come up. I don't know if I messed something up or this will be a duplicate. Just VERY happy to hear a positive update! I want to hear more about how it's going? Can you do any physical activities? What about water activities? I am getting my interstim trial this month! I will consider other options (surgery) if this doesn't work. (I think my husband is worried over the expense.)

                            Comment


                            • #15
                              Re: Should I go for it? Bladder Removal Laparscopically

                              Originally posted by ABliske View Post
                              I didn't see my response come up. I don't know if I messed something up or this will be a duplicate. Just VERY happy to hear a positive update! I want to hear more about how it's going? Can you do any physical activities? What about water activities? I am getting my interstim trial this month! I will consider other options (surgery) if this doesn't work. (I think my husband is worried over the expense.)
                              How was the Interstim trial? I see your a patient of Dr. Comiter, I'm a patient of the dr who used to run the Stanford Clinic. What are his feelings and experiences doing cystectomies for IC patients? Are you able to see him on your own or do you need a referral? Did they force you to wait 10 years before they have you this option?
                              Health Issues
                              IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
                              Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
                              Symptoms:
                              I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

                              Failed
                              Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

                              WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
                              Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

                              Comment

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