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  • 1 good piece of advice

    I am not sure where to put this but if you are thinking about having your bladder removed this is one piece of advice I will give you. Have your bladder and urethra removed at the same time. I had my bladder removed in 2008 and my urethra 1 year later. Due to many complications that the piece that was left behind (the piece that connected my bladder and urethra) is causing me I would hate anyone else to go through what I have. I in no way regreat having my bladder removed but I do regret not having the urethra removed at the same time. I was not informed before surgery time that they were not going to take the urethra. I wish I would have had the choice.

    One other thing. I had always felt that my urethra and the point where it met my bladder was a big problem. When I asked to have my urethra removed I was told that IC doesn't grow on the urethra. I was still having burning and spasms in my urethra and believed it as an issue. I had it removed and when the pathology report came back it was indeed IC in it. I am also still having trouble with the piece that was left in. It is causing spasms and bleeding. I have had many many problems with this (you can read my other post) I just found out that it is bleeding again and caused a big cyst which is probably why I am having spasms again.
    Please if you think your urethra is an issue also don't let them talk you into keeping it.
    I hope this helps someone. I wish I would have known this before my surgery.
    Lynn
    IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets

  • #2
    Lynn

    Thank you so much for posting that. I have seen in doing research that IC can indeed get into your urethrea. It's a shame you had to go through 2 surgeries. At least you got to the bottom of it finally. And you even went into it informed the 1st time. How long after your bladder removal did you get pain or continue to have pain? Interesting subject. I wonder if there is a way they can look into the urethrea while they're in there to see? Hope you are feeling better, and thanks again for that info. Jill, wife of Bob

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    • #3
      I agree about the urethra removed, though for men it is a whole different story. They still need the urethra if they want to have sex like they used to.

      Comment


      • #4
        Dreaming of Cystectomy

        Hi,
        I'm thankful that you are writing about your Bladder Removal experience. When i had health insurance, i kept asking my Uro to remove my bladder. He insisted that would not help me and i would still have pain the same pain.

        He was increasingly incompetent and put me through instilations that were painful and exacerbated my IC. He also gave me an abundance of drugs that did not work and made me feel awful.

        Now i don't have insurance and I have been waiting for a urologist referral for almost a year. Whenever i am able to see a uro again i will beg them on my hands and knees to take this bladder out.

        I would like to know more about post surgery experiences. If any of you don't mind sharing your story i would appreciate knowing how your life has improved or not.

        Thanks
        nyeema

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        • #5
          They can actually see IC in a pathology report? I always thought it was a "rule out condition" Like no lining and inflamed bladder, no cancer, things like that. Symtoms ETC.
          I learn something new everyday. Are there some sort of cells they can look at and say for sure it is IC? Amazing! Thank you. Every post seems to help others with the same problems. I hope you get relief soon Lynn. Hugs, Ziggy

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          • #6
            Ziggy, they look for mast cells.

            Donna
            Stay safe


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            • #7
              I should of been more clear. I was told by my doctor that when the pathology report came back on my urethra that I was right there was imflamation through out the urethra he didn't say it was IC just said I was right. I assumed he was talking about IC. Anyway he was saying what he thought didn't grow in it it did. Of course I would have loved to stand on the table and do a two year old dance and say na nannana naaa " I told you so"
              IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets

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              • #8
                Lynn,

                I was so hoping you were feeling better. I'm so sorry that this is still going on. You are in my prayers.

                And yes, I am so grateful to for those that went before me and I learned from their experience to have my urethra removed too as well as many other aspects.

                I remember talking to my uro about removing my bladder and when I got home, I paniced because we hadn't talked about removing my urethra too. I called his office right away and told the nurse I need to make sure that he is removing my urethra too. He called late that night and left a message, "yes, Mary the urethra's coming out too".

                nyeema,

                I'm sorry you have gotten to this point. However, a uro won't remove your bladder just because you want them to. Mine was removed because there was just nothing that was healing it and I had hydro's about 3 times a yr and it showed the bladder was getting worse and worse with each one.

                My bladder pain does not exist any longer. right now I'm dealing with other health issues.

                A good place to start is to read the archives in the bladder removal section. That helped me a lot. But we are all so different. But there are many helpful tips.

                I have been researching Low dose Naltrexone. Check it out. Who knows it may help.

                Many hugs and blessings
                MARY


                Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

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                • #9
                  Bob's NP is not hopeful about his bladder. He said "why don't you just get the darn thing out?" We are not there yet. His pain is a lot of urethreal pain, his penis he sometimes just wants to rip off and get rid of it, on top of the bladder pain. So the urethreal pain is both sexes. A big clue? But why? No infection. The IC is there. What is this crazy thing? Just makes you want to scream sometimes when you got it or your loved one has it. But we do have a lot of unexplained diseases out there that cause a lot of pain and agony, we have to fight for our place and await our turn, unfortunately. We can only and be boisterous. Hang in there all. Jill, wife of Bob

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                  • #10
                    I can relate to him. I really hurt when I had my bladder. It doesn't show infection because it isn't. IC is when the lining of the bladder is no longer protecting those nerves anymore. When the urine gets on them it is like pouring acid on nerves. This is the only way I can explain it. I have no clue how they handle urethras for men. Has he tried the numbing meds like urelle or the stuff that turns your pee orange. Sometimes this would help me for a short time but long enough to catch my breath and get on top of the pain. The only way I could handle the pain was to be medicated all the time. I was so doped up I didn't even realize it. Everyone told me after the fact of course. Good luck but you know I don't regret having the bladder out. If he has tried everything it may not be a bad option.
                    Lynn
                    IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets

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                    • #11
                      When I still had my urethra the only thing that really helped me was to inject lidocaine up in it. If there was some way Bob could have his urethra numbed I think it would be helpful. Maybe something to discuss with his uro?

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                      • #12
                        Jill (wife of Bob),

                        I can definitely relate to Bob's pain. The majority of my pain was in the perineum and the base of the penis. I would have ripped it off a many of times if I could of. Doctors told me it was probably referral pain from the bladder. I was a little concerned that with the bladder removal and the urethra staying in place that the pain would remain. Thank God that it didn't. I still have been unable to get an erection since the surgery but if that is what it took for me too get out of the pain then I'll take it. I can get aroused and reach climax but no erection so far.

                        I admire you for your research and involvement in Bob's IC treatment. This indeed is a disorder that affects the whole family. It sounds like you are very understanding.

                        Mike

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                        • #13
                          I'm new here. Been suffering for about a year and a half. I have a question that I have researched and have gotten diferent opinnions from diferent Dr's. Is some one with mild ibs symptoms (constipation) a canidate fo a continent pouch?

                          Thanks for all everyone involved with this sight does.

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                          • #14
                            Thank you Mike, so glad you are doing so well, and appreciate your input. We are going to hold off as long as we can. Bob has a lot of other health issues, the major one being PEs in his lungs and a previous huge DVT in his thigh, so surgery is risky for him. I'm sure it will come to that eventually.

                            Just a question, did you ever seek holistic/naturopathic. I think we will go there next.

                            And also, I think I told you about the Mylan fentanyl patches, but we are now on the gel type, and altho we have to tape them, they seem to work a whole lot better, and are less expensive. Learn something new every day.

                            So very happy you are doing well, you must be, don't see you too much anymore! How wonderful for you! And gee whiz, sex is not the most important thing in the world. Feeling better and being able to function and interact with your family is way over sex. You won't drop over from not having sex, and you can make love without the ultimate. For sure your wife is glad to just have you back. You keep going, guy, Bob is always encouraged by your posts. There is hope for everyone, we just each have to find our own hope. Take care, tell your wife she is special from me. I know what she has gone through. Jill, wife of Bob

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                            • #15
                              Not sure what your definition of holistic/naturopathic is. People have a varying opinion. I went to a chiropractor, an acupuncturist and a physical therapist; all with no avail. If you are including vitamins, minerals, herbs, etc; I tried about everything and every combination over the years, again with no avail.

                              Mike

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