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  • #61
    great to hear, how your progressing, sorry to hear about the major intestinal pain. Please post another update in a month.

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    • #62
      About Facing bladder removal

      I had my bladder removed 4.5 years ago for the same reasons but worse. My bladder capacity was only 50cc and too was self cathing. My bladder was the size of a walnut. I have complications from leaking with my urostomy and I do have bad days, but my bladder was so bad & painful there was no other choice. I have a new set a problems now but the pain I had is gone although I do get phantom pain, but its not as bad as what your dealing with now.

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      • #63
        thanks for posting that info about your experience with bladder removal. Are you a girl or guy? Did you have your prostate removed or urethra? I"m a guy, and I"m really fearful the pain is coming from my urethra. I"m just not sure. Sometimes I think that maybe removal would help because the urethra is connected to the bladder, and maybe if bladder was removed the pain from urethra wouldn't be transmitted. Or maybe no more urine going thru the urethra would stop the pain. I don't have a problem with bladder capacity or frequency or urgency. I just have pain. It is in my urinary tract because when I get an instillation or lidocaine injected into the urethra, the pain goes away.

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        • #64
          Originally posted by neohioic View Post
          thanks for posting that info about your experience with bladder removal. Are you a girl or guy? Did you have your prostate removed or urethra? I"m a guy, and I"m really fearful the pain is coming from my urethra. I"m just not sure. Sometimes I think that maybe removal would help because the urethra is connected to the bladder, and maybe if bladder was removed the pain from urethra wouldn't be transmitted. Or maybe no more urine going thru the urethra would stop the pain. I don't have a problem with bladder capacity or frequency or urgency. I just have pain. It is in my urinary tract because when I get an instillation or lidocaine injected into the urethra, the pain goes away.
          I'm absolutely not a medical professional and have never had a suprapubic catheter, but reading your post I just had a brainstorm --- since you wonder if the pain would go away if there were no urine going through the urethra, would/could a suprapubic catheter (inserted into the bladder through the abdomen) divert the urine away from the urethra and allow you to find out if the pain is caused by urine contact with urethral tissue? If you're considering bladder removal, it might be worth at least discussing this with your doctor?

          Donna
          Stay safe

          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


          • #65
            Hi Donna, that is an interesting idea. I have never thought of this idea. I don't think they would do that for me. I mean they are going to cut a hole into my bladder and put the catheter? Maybe they would disconnect my ureters from my kidney's instead and have them going to temporary urine bags. I should ask about this. Honestly though, I think the pain would still be there. I think wherever the pain is coming from, if it remains, likely the pain will remain tooo.

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            • #66
              Today marks the 6 months’ anniversary since my bladder was removed and the neobladder was constructed.

              I am back at work full time, and it’s absolutely fantastic. I have gone from worrying about not being able to work at all, to finally looking forward to every day at work. The constantly downwards spiral has been flipped and I am finally feeling better and better.

              I am still completely pain free and there are no signs of the disease.

              I can pee on command and I leak much less now. Still wearing a small pad but that’s not a problem.

              I can still have some issues with my gut, but it less problematic now and there have been no more emergencies. A CT scan showed some minor issues but nothing to be concerned about.

              I need to be mindful of the time between voidings so I have set my watch to alert me every other hour during the day. That works fine. I only actually go when I feel a need for it, or when I know that I’ll be stuck in a meeting for hours.

              At night I set my alarm at 3.5 hours after going to bed, and then another alarm for when I need to get up. Usually I wake by myself and urinate into a bedside flask, and just reset the alert.

              I have not been able to resume physical exercise. I am too tired in the evenings. But I am considering paying for a couple of months with a personal trainer at my local gym in order to get started.

              I bought a new seat for my bicycle from Spongy Wonder (what a marvellous name for a bicycle seat). Google it. I have only tried it for a very brief tour around the neighborhood but plan to give it a real test this weekend.

              Oh, and I drink more wine and eat almost anything I want, and I very much look forward to July when my wife and I will travel to Italy to celebrate our 20th anniversary.

              Even the ED seems to be resolving itself. It’s not perfect yet but moving in the right direction, finally,
              Last edited by tormod; 06-06-2019, 09:07 AM.
              Male (48) living in Oslo, Norway. Diagnosed (cysto) with BPS/IC with Hunner's lesions on 23 Nov 2015.
              Symptoms: severe bladder pain, bladder cramps, urethral burning, painful urination, rectal spasms, acute retention (requiring self catheterization).
              Treatment: successful hydro w/fulguration on 21 Dec 2015. Complications due to blood clots in bladder, second surgery cleaned it out. Second fulguration in May 2017. Currently (2018) on Uracyst instillations every week. Most symptoms are back. Up 6-10 times per night. Currently waiting for neobladder surgery.
              Medication: Tamsulosin, Vesicare, Betmiga, Paracet, Tramadol when needed
              Other diseases: IBS and chronic asthma, both of which are under control through meds and diet.

              Read My story here at @ICN

              Comment


              • #67
                Thank you so much for the update. It's always nice to see a success story.

                Donna
                Stay safe

                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


                • #68
                  thanks for the update. It is very helpful to see the progression from getting the surgery to back to a normal life. I'm still hanging in there. I think I'm getting some relief from the cyclosporine I've been on for 2 months now and taking pain killers like tramadol a little more often.

                  Comment


                  • #69
                    So it's been over 9 months now and I am doing very well. Still struggling with fatigue but I am getting some help (via my health insurance) from a psychologist to learn to cope with it (for me it's all about not having too many appointments outside of work right now).

                    I did restart physical exercise with a personal trainer. But a month ago I caught a cold and it has lasted an entire month. It's finally going away so I can resume exercise. Physical exercise gave me a much needed boost of energy so it is important for me to get back into it.

                    I went to a wine tasting event with a friend and had absolutely no bladder issues at all.

                    So all in all things are fantastic.

                    Edit: And even the ED is recovering, although slowly. My wife is working in another country for 4 months and my doctor is positive that it should be working fine by the time she comes back.
                    Male (48) living in Oslo, Norway. Diagnosed (cysto) with BPS/IC with Hunner's lesions on 23 Nov 2015.
                    Symptoms: severe bladder pain, bladder cramps, urethral burning, painful urination, rectal spasms, acute retention (requiring self catheterization).
                    Treatment: successful hydro w/fulguration on 21 Dec 2015. Complications due to blood clots in bladder, second surgery cleaned it out. Second fulguration in May 2017. Currently (2018) on Uracyst instillations every week. Most symptoms are back. Up 6-10 times per night. Currently waiting for neobladder surgery.
                    Medication: Tamsulosin, Vesicare, Betmiga, Paracet, Tramadol when needed
                    Other diseases: IBS and chronic asthma, both of which are under control through meds and diet.

                    Read My story here at @ICN

                    Comment


                    • #70
                      Good good good ! I'm so happy for you.


                      Donna
                      Stay safe

                      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


                      • #71
                        On Friday I went to the hospital for a follow-up since it is now 18 months after the surgery. I’m doing very well. Although the disease is gone, it still manages to remind me that it took many years from my life.

                        But the neo-bladder is working very well and I now have no complications to report.

                        I get up once every night to void. The capacity is 500ml. I wear the smallest male pad during the day and a larger one at night, mostly for safety. I have very few leaks.

                        So the operation has worked out very well for me.
                        Male (48) living in Oslo, Norway. Diagnosed (cysto) with BPS/IC with Hunner's lesions on 23 Nov 2015.
                        Symptoms: severe bladder pain, bladder cramps, urethral burning, painful urination, rectal spasms, acute retention (requiring self catheterization).
                        Treatment: successful hydro w/fulguration on 21 Dec 2015. Complications due to blood clots in bladder, second surgery cleaned it out. Second fulguration in May 2017. Currently (2018) on Uracyst instillations every week. Most symptoms are back. Up 6-10 times per night. Currently waiting for neobladder surgery.
                        Medication: Tamsulosin, Vesicare, Betmiga, Paracet, Tramadol when needed
                        Other diseases: IBS and chronic asthma, both of which are under control through meds and diet.

                        Read My story here at @ICN

                        Comment


                        • #72
                          Wow thats great. 500 ml is a plenty large good size bladder.Thanks for posting the update. I'm still fighting. I get some very good days where I think I have this condition beat, but then I have painful days where I"m like I'm sick of this and I'm going to get surgery. It is still not stable for me unfortunately. Had a great day yesterday and today is starting very good. I would get the removal but I"m just not willing to give up my prostate yet and the doctors strongly recommend removing this. They say if that is not removed, and there is pain left over and they have to re-operate after already opearting there is is a mess. Even though the surgeon tells me he spares the nerves I"m concerned about not having the ability for erections and orgasms. I've been taking 100mg of nitrofurantoin each night and it has helped greatly. I'm hoping I can take this long term without having big problems. I've discovered that the hiprex which has helped me so much actually was causing pain/irritation so I'm temporarily stopping it to see what happens.

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