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  • #16
    Re: Want a Removal despite the possible risks

    Hi TeachHealth,

    A lot of your thoughts I have had myself. How long must one suffer before the bladder is removed?! I feel the exact same way. What I am doing is going down the line of every treatment, according to AUA guidelines. If I get to the point where I am done, you better believe I will push for a removal. I am only into Step 2 therapies, but gosh...I daydream about having this thing removed. I mean, the fact that we are daydreaming about having an organ removed really paints a picture about how SEVERE the situation is.

    What is bizarre to me, is that doctors are ok with drugging people up with pain meds, allowing them to go on disability (when many people WISH they could work) and just letting them suffer for years on end. When they could remove the diseased organ and give that person a chance? I know doctors are afraid of getting sued etc.. but as a patient, this is my body, I should be able to do whatever the heck I want with it! And also what does not make sense is that they say "the pain won't go away, new nerves form" well, if you didnt make people suffer for YEARS in chronic pain, maybe that wouldn't be happening?? I mean I am no genius but the longer you allow chronic pain to go, the worse it gets. Just remove the source! Don't wait 10 years!!

    Now am I saying I would do it NOW ( I am 1.5 year into this nightmare) no way. But let's say after 2 years nothing has worked, I would say I am done with this and I want it out. I am only 30, I don't want to waste my life due to this stupid disease. And honestly, if after a few years I am still disabled and living in misery you better believe myself & my family with be hunting down someone to get this thing outta me. We are fighters, this is no way to live, this is an INHUMANE way to live.

    Fight on,

    -M
    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


    • #17
      Re: Want a Removal despite the possible risks

      I had my bladder removed 4 months ago and I've had complications since (I am in the US--UK is fictitious to keep me out of the search engines). Like you, I had a very hard time finding a doctor to do it. I even drove all the way to the moon and back and was refused. If you want to get your bladder removed, you have to find a bladder removal surgeon who deals with bladder cancer. They do not need a referral. There are only a handful of urologists that do it, so jump through the hoop and go straight to a bladder removal surgeon.

      The reason doctors don't like to do is because of the phantom pain, but I still think it's a bunch of crap that doctors don't like to remove them. IC bladders are still diseased and some are an absolute mess. My bladder still was in the worst shape infact, my surgeon said it was the worst he had ever seen.

      yes, the surgery recovery was hard, so is living with IC. I still would do it again.

      If you want to get your bladder removed, I cannot stress this enough, get the internal indiana pouch instead. I had chosen the outside bag (ileal conduit) and the TYPE of urinary diversion has been my worst regret. The complications I've had have been from my stoma because it sunk into "a well" and I have burning skin and leaks daily. Also, the outside bags don't hold much. You have to empty then when they are only 1/2 full which is about 100cc's. I am still in the bathroom 20 times per day emptying this thing. I am not a candidate for a revision for the internal pouch so I am stuck with this.

      Comment


      • #18
        Re: Want a Removal despite the possible risks

        Most doctors will at least want a patient to try all possible treatment options before thinking of bladder removal --- I suspect the primary reason is that it isn't reversible --- you can't have it put back. There are some instances when cystectomy is the best option, but I have to agree that it should be a last resort option.


        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


        • #19
          Re: Want a Removal despite the possible risks

          I agree with Donna, that the surgery is so finite. once it is done there is no going back. also there are no tests or markers to see if it will be successful for you. there are other factors that play into all this, for one there is insurance, also some hospitals (ay least it used to be this way) make surgeons justify why they are doing certain surgeries. As someone who has had my bladder removed, I can tell you that it was the last thing I wanted to pursue. I tried EVERYTHING!!!!! I was finally told by my doctor that I had no options left to try. I certainly can understand the frustration you feel and the helplessness,anger, etc. when nothing seems to help. There are so many great options now to try that were not available to me 30 years ago, I encourage all of you to try and keep trying. It seems that they continue to find new ways to deal with awful disease, so hang in there, one of these days they may come up with the perfect option for you. If however you get to the point I was at, then do all the research into finding the best and most skilled doctor in the area of bladder removal and ostomy creation. It will make all the difference.

          Comment


          • #20
            Re: Want a Removal despite the possible risks

            Bladder removal is a serious surgery with possible serious consequences. It's not like extracting a tooth. If you have a tooth pulled, you've got 31 others to help get the chewing job done. You probably won't even miss a tooth or two. But you've only got one bladder, it performs an important job in your body (and it's the ONLY organ that does it), it's connected to a couple of other organs and it can't be removed just because you want it taken out. I totally understand the position of the physician and insurance companies in not doing it because that's what the patient wants. There's kind of a moral issue too. Can a patient have ANY organ removed at will because that's what they want done? Where is the line drawn?

            I understand the frustration of those who just want the pain and aggravation of IC to stop and they believe having the bladder removed is the answer. But I also understand why a physician may not agree with them.

            "When you gotta go, you gotta go!"

            Comment


            • #21
              Re: Want a Removal despite the possible risks

              I had End Stage IC for 42 years before getting my bladder removed. If 42 years isn't enough time to try everything, I don't know what is. Plus, I had retention and was wearing a foley catheter just to leave the house. My surgeon could not believe how bad my bladder and urethra was when he removed it. It was the worst he had ever seen. He told me I made the right decision. Had I continued to live like that, I would have committed suicide because there was no way I could continue living. I would gladly do it again.

              Comment


              • #22
                Re: Want a Removal despite the possible risks

                I will agree, bladder removal is definitely a serious surgery. I do think other less invasive things should be tried first before having the bladder removed. I also agree with MissM though, there has to come a point where you need you really analyze your "quality" of life. I have been suffering with IC since 2005 dx in 2006. I have tried most all the IC treatments to no avail. There are a couple things I Have not done and will not do( botox, hydrodistension). I am allergic to sooooo many things( especially chemicals) so botox is out. I talked with my allergist and she said it would be pretty risky. I mean once botox in injected into your body, it is Not coming out until it wears off. God forbid I had a reaction. Also, my reactions usually are not immediate. For me it could come on days later. Also, it is a toxin and is known to cause issues with the body as a whole and cellular changes to the skin. My gut just tells me no way. I would rather have my bladder removed than have botox injected into me.

                I guess all I am saying is that yes, bladder removal is a Huge decision to make, and it is a permanent one once it is done. The way I see it is if you feel you have tried everything there is that you were willing to try and you have no quality of life, then I say it should be an option. No insurance company should have the right to refuse in my opinion. A lot of doctors will refuse. Keep in mind that these doctors are not living with IC. If your at a stage where you have absolutely No quality of life due to your bladder and nothing is helping you, then it is probably time to have the bladder out. Better to do it while you are younger rather than older due to having more complications and risks as you get older just from the trauma of surgery itself. Remember, you know your body better than any person, doctor etc. and you have to go with your gut feeling on what you think it the best route to take. I am still hanging in there, but bladder removal has crossed my mind more than once. I also have other health issues that I am dealing with so it really has not been easy for me at all. I know most doctors will try and sway you away from having the bladder out( again, they really do not know what it is like to live with the disease). From their perspective, all they can see is what a serious life changing surgery bladder removal is. They are not really understanding just how terrible a life can be living with an IC bladder.

                Comment


                • #23
                  Re: Want a Removal despite the possible risks

                  Jen, I think with insurance companies besides the cost of the surgery they are also concerned with long term effects and costs of aftercare. Having an ostomy is not cheap, supplies can be incredibly expensive,plus if you do run into complications there will be those costs to consider as well. I am just playing the devils advocate here. While many people do just fine afterwards once the healing is all done there are those who may have long term consequences and as you know no way to predict who will have them. do feel though when everything has been tried then that option should be available to the patient.

                  Comment


                  • #24
                    Re: Want a Removal despite the possible risks

                    Originally posted by jen74 View Post
                    I will agree, bladder removal is definitely a serious surgery. I do think other less invasive things should be tried first before having the bladder removed. I also agree with MissM though, there has to come a point where you need you really analyze your "quality" of life. I have been suffering with IC since 2005 dx in 2006. I have tried most all the IC treatments to no avail. There are a couple things I Have not done and will not do( botox, hydrodistension). I am allergic to sooooo many things( especially chemicals) so botox is out. I talked with my allergist and she said it would be pretty risky. I mean once botox in injected into your body, it is Not coming out until it wears off. God forbid I had a reaction. Also, my reactions usually are not immediate. For me it could come on days later. Also, it is a toxin and is known to cause issues with the body as a whole and cellular changes to the skin. My gut just tells me no way. I would rather have my bladder removed than have botox injected into me.

                    I guess all I am saying is that yes, bladder removal is a Huge decision to make, and it is a permanent one once it is done. The way I see it is if you feel you have tried everything there is that you were willing to try and you have no quality of life, then I say it should be an option. No insurance company should have the right to refuse in my opinion. A lot of doctors will refuse. Keep in mind that these doctors are not living with IC. If your at a stage where you have absolutely No quality of life due to your bladder and nothing is helping you, then it is probably time to have the bladder out. Better to do it while you are younger rather than older due to having more complications and risks as you get older just from the trauma of surgery itself. Remember, you know your body better than any person, doctor etc. and you have to go with your gut feeling on what you think it the best route to take. I am still hanging in there, but bladder removal has crossed my mind more than once. I also have other health issues that I am dealing with so it really has not been easy for me at all. I know most doctors will try and sway you away from having the bladder out( again, they really do not know what it is like to live with the disease). From their perspective, all they can see is what a serious life changing surgery bladder removal is. They are not really understanding just how terrible a life can be living with an IC bladder.
                    Jen, Even though I don't suggest hydrodistention as a routine treatment for IC, I would definitely try it before bladder removal. At the time I was diagnosed back in 1975 that was about the only treatment available and for me it has worked --- and I have had over forty now. I have read that something like 50% of IC patients have relief from the procedure.

                    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


                    • #25
                      Re: Want a Removal despite the possible risks

                      I would have to think on that. I am just worried it would make my pain worse. I cannot imagine having worse pain. I mean understand the logic to where a hydro would be less invasive than bladder removal. I guess I am just afraid of getting any worse. It is something to ponder though.










                      Originally posted by ICNDonna View Post
                      Jen, Even though I don't suggest hydrodistention as a routine treatment for IC, I would definitely try it before bladder removal. At the time I was diagnosed back in 1975 that was about the only treatment available and for me it has worked --- and I have had over forty now. I have read that something like 50% of IC patients have relief from the procedure.

                      Donna

                      Comment


                      • #26
                        Re: Want a Removal despite the possible risks

                        Originally posted by jen74 View Post
                        I would have to think on that. I am just worried it would make my pain worse. I cannot imagine having worse pain. I mean understand the logic to where a hydro would be less invasive than bladder removal. I guess I am just afraid of getting any worse. It is something to ponder though.
                        I just wanted to chime in about the hydro. I had it done about a month ago. It didn't make me worse, so that is positive. I was scared about the exact same thing as Jen. However, I can't tell if it helped. I think I have had less flare ups and less severe ones when they do so it may have helped. My frequency has stayed steady, if not a little more at night but I don't know if I can blame the procedure. My only negative experiences were immediate post op pain but the hydrocodone killed it (so that is good), basically peeing on myself for several hours (had to wear a diaper home) because I was desperate to relieve myself when I could (I had trouble peeing for a bit afterwards) and the cost. I hadn't used up my premium yet so that didn't help but now owe several thousand dollars. It was kind of a shock. Would I do it again? Uhm...that is a hard question. I have trouble thinking about the cost adding up over the years when it would cost more than a removal in the long run but I might go for it again in a couple of years if instils don't work. I'm trying to avoid botox at all costs.

                        As far as the removal talk, I'm still in the same swinging boat where I feel in my gut it is what I want but feel fear in my head and my heart is caught in the middle. I keep catching glimpses of myself in daydreams enjoying ethnic food, good wine, road trips, traveling abroad, riding a bike, walking a trail and finally spending time with friends and family...without my bladder. I need to get past the negative attitude of worrying that I would be one of the unfortunate ones with all kinds of complications and end up on dialysis. I want to be able to live into my 70s at least. I also worry about medical debt making all those daydreams disappear in the long run too. I wish someone could just tell me it is the right thing to do, do it now, you'll be fine and live happily ever after...stop being such a negative nancy. IDK.

                        Comment


                        • #27
                          Re: Want a Removal despite the possible risks

                          I understand why you wouldn't want to do it Jen, what if it makes you worse and they won't remove your bladder, then what happens?? Ughh but I'm pretty sure insurance and doctors would want you to do it
                          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


                          • #28
                            Re: Want a Removal despite the possible risks

                            This is Lou Lou girl. I was in the Liris trial and the device gave me two weeks off the pain meds. Well, my doctor (my new urogyno) said that that device is stalled and of course the FDA moves like a turtle. My doctor advised against bladder removal. I have had it for 27 years. Now my new urogyno says there are not any ulcers, when the other one I had said there was. Frustrating. I want to know why is there not some sort of data base with information on all bladder removal cases for IC, so that we knew what kind of IC they had, whether the bladder was shrunken, or ulcerated, or did they have the glommerations, etc. and each person asked the question, "Was this worth it?" Was yours shrunken or ulcerated? Do you also have other neurological conditions such as fibromyalgia? IC pain that continues even after the bladder is removed and all healed, is thought to be nueropathic pain. I want to know if there are bladder removal success stories even when they have these other conditions, or is it the ones who don't have the neurological problems that do well. I have vulvadynia too. There is not any visible cause that can be found on my private parts, yet there is burning and stinging sometimes. I would like to know the answer to that question, if anyone can answer it.

                            Comment


                            • #29
                              Re: Want a Removal despite the possible risks

                              I know this is an old thread, but Teachhealth how are you doing today? Did you get closer to bladder removal?
                              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


                              • #30
                                Re: Want a Removal despite the possible risks

                                Trei6y1952 Are you still having issues with stoma?

                                Comment

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