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  • #16
    Help! New to this forum!

    I’ve been trying to find anyone who has had bladder removal for IC and am so grateful to have read these posts forgive me if I don’t know what I’m doing as I type this! I’ve been in constant pain for 4 years straight now and have tried most everything! I am considering neobladder surgery and wondered if there was anyone out there who had this type of surgery? I’m 57 and have no life due to this awful disease. Please, if there’s anyone out there who knows of some doctors in the area surrounding Indianapolis, Indiana who performs bladder surgery for IC speak up!

    Thank you,
    DonnaS

    Comment


    • #17
      Re: Help! New to this forum!

      Hi DonnaS,

      Nice to meet you! I am 51, and I had IC for 43 years with the last 8 being absolutely miserable. So I know the challenges you are facing. Nothing worked for me either. I am happy to help!

      I have the outside bag also known as a urostomy, but I did ask two doctors about the neobladder when I was doing my research. I will tell you what my surgeon said in Indianapolis, as well as Dr Rackley at the Cleveland Clinic. My surgeon in Indianapolis said that he only did one patient with the neo, and preformed approximately 150 removals by that point, and that person had a lot of phantom pain. At the Cleveland Clinic, I was told that they no longer do neobladders or an internal bladder made into whats called an Indiana pouch because they found the success rates were worse. With that information, is why I chose the outside but there have been challenges with that too. This is not to imply that this will happen to you if you choose to go with the neo bladder. I have personally met people who had the neo, as well as the internal Indiana pouch, and said it was the best decision they ever made. A good question to ask your doctor is if in the event you do get a lot of pain, can your neo be converted into a urostomy? Its important to know that your options will still be open, as well the health consequences, such as short bowel syndrome if it ever has to be converted in the future.

      Before I had my bladder removal, I asked my doctor, "Why can't he do a bladder transplant?" He said that there is hundreds of nerves that connect to the bladder and it would be impossible. In my case, I have about 70% bad days and 30% good. My surgeon did cut the nerves to where my bladder was, but not where my urethra was. He only removed the top half to keep my vagina from falling out. Thats the good news. The bad news is that I still have burning pain in the bottom half. I have dwelt with catheters for 8 years, and I learned very quickly that my urethra got very sore, so that was also why I also chose the outside bag.

      As for the pain part, I have a feeling of pressure of a full bladder (same as it was on only 25cc's) when food has traveled into the lower half of my small colon. Anything that puts pressure down there (even pants) is painful for me. So I am having to relearn how to eat in small portions, which is difficult when I want to chow down a good steak and potatoes at a restaurant. And I only wear stretch loose paints. The good news is that on the days I have no pain, those days are great, and that part has still made it worth it. But I am still on the same IC medications that knock me out when the pressure does happen. Some times its for no rhyme or reason. My own personal theory is that not ALL of those nerves that surrounded my bladder could be removed, so it would make sense to me as to why those nerves could easily get inflamed. If all those nerves were cut, I would loose my sexual function or not know when I would need to have a bowel movement (sex flares it up too, so that's off the shelf for me). But for some people they feel better after their removal and find they want sex. I'm sure I also have a lot of scar tissue in my pelvis too, and that too can contribute to phantom pain. Some people only get it for 20 minutes. For me, it can last 24 hours with only a 1 hr break. But I do get more sleep at night. That alone made it worth it.

      I don't want to discourage you. Even if you only get 20% better days and a good night sleep, that's still better than what your living with now. Only you can make that decision, as your the one living inside your body. One helpful tip I can give you though, is that bladder removals for cancer patients is not the same as IC patients. Our brains have been wired with years and years of pain. So don't go by the answer of a cancer patient. Just so you know. I have found that cancer patients have had better success rates.

      Don't hesitate to ask any questions. I don't know what side of the US you live on, but I've heard Dr Evans in South Carolina is very good too.

      Much love to you,
      Trey
      Last edited by Trei6y1952; 06-01-2018, 03:12 PM. Reason: Typos

      Comment


      • #18
        Re: Had bladder out 4 days ago! yahoo!

        Hi Everyone! I' m back to give a 1 year update after having a bladder and 100% urethral removal, having the ileal conduit with urostomy ( outside bag). Happy to report that I still have absolutely NO pain! Rarely, I get a tiny phantom urge to pee where my urethra was, but it only happens , say twice a month, and lasts only about ten minutes! Quite the difference from the constant excruciating urethral and labial pain I had previous to surgery!!!!! I finally have my life back! If you would like further info or just to chat, respond here or email me - [email protected]. Looking forward to hearing from you!

        Comment


        • #19
          Re: Had bladder out 4 days ago! yahoo!

          Glad to hear you found relief from this terrible medical condition. So you choose to have urethral removal too and not just bladder?

          Comment


          • #20
            Re: Had bladder out 4 days ago! yahoo!

            Hi neo! YES!!!! I was just thinking of responding to Trey, who if I understand correctly did not have the ENTIRE urethra removed...correct me, Trey, if I am wrong...but I have read other posts from women who did not have 100% of the urethra taken out, and they later had the initial pain come back, then went back later to have it ENTIRELY removed, resulting thankfully in complete remission from pain.So, yes, after having researched that, I made sure I verified with my surgeon beforehand, that he would remove 100% of the urethra- there is no anatomical reason not to be able to do this.....Find a surgeon who can do this type of surgery well! I am one happy camper today! NO MORE PAIN, EVER, AFTER THE CYSTECTOMY! And the ostomy is VERY easy to take care of, I only have to change my bag once a week, and it's so fast! SO WORTH IT!!!!!

            Comment


            • #21
              Re: Had bladder out 4 days ago! yahoo!

              Hi, Trey, I don't quite understand what your surgeon did.... He only removed " the top half" of what? Your urethra?

              Comment


              • #22
                Re: Had bladder out 4 days ago! yahoo!

                I"m really hoping if I eventually choose to have my bladder removed that I only have the bladder removed and nothing else. I"m a man, and if possible I would like to keep the prostate and other organs/lymphnodes except for the bladder so maybe I would be lucky and still have my sexual function. I only have pain that to me feels like it is in my bladder. When I get an instillation the pain goes away completely.

                Comment


                • #23
                  Re: Had bladder out 4 days ago! yahoo!

                  Hi Neo,
                  I am happy to hear that your pain is only in your bladder, and that the installations are effective- mine never helped, but my pain was all at the urethra and outside. Sounds like if it came to that, you would only lose your bladder and keep everything else....Good luck to you!!!

                  Comment


                  • #24
                    Re: Had bladder out 4 days ago! yahoo!

                    Originally posted by neohioic View Post
                    I"m really hoping if I eventually choose to have my bladder removed that I only have the bladder removed and nothing else. I"m a man, and if possible I would like to keep the prostate and other organs/lymphnodes except for the bladder so maybe I would be lucky and still have my sexual function. I only have pain that to me feels like it is in my bladder. When I get an instillation the pain goes away completely.
                    How long does the pain relief from an instillation last? I'm wondering if you might be a good candidate for self instillations? That way you could do an instillation whenever the pain hits --- or if you know how long the treatment will last, you could do one before you have pain. I know it might be a little more difficult for a man, but some do manage to do catheterizations --- it might be worth considering?

                    Sending warm healing thoughts,
                    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: Had bladder out 4 days ago! yahoo!

                      You know, when I get an instillation, things are always different. Sometimes while the instillation is in, I get relief. Sometimes when the instillation is in if feels numb but yet irritated. Not as bad as my regular pain but still not ideal. Then usually the day following an instillation things get really good. Then even by the evening of the day following an instillation it isn't as good. Then the 2nd day after an instillation isn't as good. Then maybe the 3rd day is even better than the 1st day. So getting an instillation isn't just a "fix all". I'm on 12 days since my last instillation and I've had 2 great days in the row right now!!! I'm thinking I want to get instillations on a regular basis. It seems like I'm improving at times. I just gotta keep hanging in there. I don't think daily instillations would be good for me. Even weekly is too often. I did weekly for a while, and it helped at the time but that was too often. I want things to settle down, trying to get this illness under control is just difficult. If I can turn these 2 days into a week of feeling good, then maybe I can keep it going. Maybe I can get to where these nerves giving constant pain calm down. I think the nerves are kind of like stuck in the 'ON' position. Getting them to turn off is difficult.

                      Comment


                      • #26
                        Re: Had bladder out 4 days ago! yahoo!

                        Originally posted by neohioic View Post
                        You know, when I get an instillation, things are always different. Sometimes while the instillation is in, I get relief. Sometimes when the instillation is in if feels numb but yet irritated. Not as bad as my regular pain but still not ideal. Then usually the day following an instillation things get really good. Then even by the evening of the day following an instillation it isn't as good. Then the 2nd day after an instillation isn't as good. Then maybe the 3rd day is even better than the 1st day. So getting an instillation isn't just a "fix all". I'm on 12 days since my last instillation and I've had 2 great days in the row right now!!! I'm thinking I want to get instillations on a regular basis. It seems like I'm improving at times. I just gotta keep hanging in there. I don't think daily instillations would be good for me. Even weekly is too often. I did weekly for a while, and it helped at the time but that was too often. I want things to settle down, trying to get this illness under control is just difficult. If I can turn these 2 days into a week of feeling good, then maybe I can keep it going. Maybe I can get to where these nerves giving constant pain calm down. I think the nerves are kind of like stuck in the 'ON' position. Getting them to turn off is difficult.
                        It sounds like you may be making slow progress --- and once you learn how frequently you need instillations, you may have even more good days.

                        Keep us posted.

                        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


                        • #27
                          Re: Had bladder out 4 days ago! yahoo!

                          I had 4 real good days in a row. I was taking prelief before some dinner meals even though they were safe. I started the day doing great. I thought it was going to be the fifth day in a row doing great. I had a couple really simple donuts at work today and the low but bad pain that I can't live with is back. I had a couple donuts on 2 days ago and I handled them fine. The ones I had today weren't the glazed style with the white flower that I had previously with no problems. These were 'cake' donuts with just sugar and cinnamon. These 'cake' donuts were really simple looking like a brown color and the inside was like a yellowish cake consistency. So I've been in various states of pain all today. The kind of pain I can't live with. Anyway, I'm back to square one. Well, maybe not square one, after all I am working and surviving but I can't live with this pain. It is too bad. The previous 4 days I was thinking to myself, I don't want my bladder removed, I"m cured. But with the pain like this again today I'm feeling like nothing has changed.

                          Comment


                          • #28
                            Re: Had bladder out 4 days ago! yahoo!

                            Hi Neo,

                            I'm sorry your 4 day streak was ruined, that is the worst! I always get disheartened when that happens, but I try to remind myself I can get there again, and you can too!

                            I don't know if sugar is something you eat often, but unfortunately for me it is officially off the table now I've noticed that when I "fall off the sugar wagon" my pain slowly starts to come back. Not like if I were to eat a bladder irritating food (for me that pain hits the next day like clockwork), but it's almost like it has to build up in my system. I'm assuming this is because sugar causes inflammation in the body. I've also heard cinnamon can be an irritant?

                            Just thought I would share! I hope you get relief again soon!

                            Comment


                            • #29
                              Re: Had bladder out 4 days ago! yahoo!

                              Hi Neo,
                              It’s hard to figure out triggers but the good news is you had 4 good days in a row. That’s huge progress! I have to constantly remind myself with this disease, it’s 2 steps forward, 1 step back. It’s a very gradual healing process. Sounds like you are on your way!

                              Comment


                              • #30
                                Re: Had bladder out 4 days ago! yahoo!

                                Originally posted by neohioic View Post
                                I had 4 real good days in a row. I was taking prelief before some dinner meals even though they were safe. I started the day doing great. I thought it was going to be the fifth day in a row doing great. I had a couple really simple donuts at work today and the low but bad pain that I can't live with is back. I had a couple donuts on 2 days ago and I handled them fine. The ones I had today weren't the glazed style with the white flower that I had previously with no problems. These were 'cake' donuts with just sugar and cinnamon. These 'cake' donuts were really simple looking like a brown color and the inside was like a yellowish cake consistency. So I've been in various states of pain all today. The kind of pain I can't live with. Anyway, I'm back to square one. Well, maybe not square one, after all I am working and surviving but I can't live with this pain. It is too bad. The previous 4 days I was thinking to myself, I don't want my bladder removed, I"m cured. But with the pain like this again today I'm feeling like nothing has changed.
                                Sometimes it's hard to find what's in a commercial product. I bought one of those pans that you can use to bake donuts in the oven --- I prefer to not eat commercially baked goods if I can avoid them.

                                You just had some good days, which is a "win" for you --- and you will have more.


                                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

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