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  • Still doing great!

    Hi,

    I'll bring up my story again and try to make it as short as possible, since I only come on here once a year to update people and hopefully give people who are where I was 5 years ago some hope.

    I was 22 when I developed IC, being a guy it was probably even harder to get a correct diagnosis since it's primarily a "women's disease"...now wether that is true or not I don't know, since alot of men get misdiagnosed with prostatitis.

    Anyway,

    I went from being the happiest guy ever with a near perfect life to utter missery.
    I struggled and suffered, tried everything and no matter what, I couldn't get rid of my discomforts.

    It was literally driving me insane.

    I had a very supportive family and wife who helped me as best they could, I wouldn't be here if it was not for them.

    I didn't get a diagnosis for a long time, I went to 15 urologists and nothing.
    Cystoscopies, bladder scans, everything...tried lots of meds but nothing helped.

    I honestly thought this illness would be the end of me.

    I learned that most doctos are jerks unfortunatley...one even went so far as to state that there was nothing physically wrong with me, but it was all in my head...and sent me to a psychiatrist...for this very physicall ailment (later we took legal action against this doctor who lost her license).

    I finally got diagnosed by a professor who is one of the leading authorites on IC and said it was a textbook case.

    After that I saw more urologists and noone could help..until I found the most wonderful and kind one ever.

    He sat and just LISTENED to me and my story for two hours.
    He realized what pain it had brought and how it had devastated me.

    I couldn't drink anything without pain..even water irritated it, coffee, coke, juice and I was in agony for days.

    I told me that there is one more thing that can be done...bladder surgery.

    Not bladder removal mind you, but where they leave your old bladder, and just make a new one (Kochs bladder) out of the small intestine and connect the kidneys to that, thereby bypassing the old bladder.

    You get a small quartersized opening in your stomache which you cover with a special skincoloured bandaid.

    He said this is the last option we have..first I had to try instillations with Uracyst for 2 months...then if that failed (which it did) surgery.

    I had the surgery now a little more then 4 years ago, and from the minute I woke up after the 8 hour procedure I had my life back.

    Recovery took a few months for me to get back to full strenght, but it was nothing compared to what I had to go through before.

    Nowadays I lead a perfectly normal life.
    I work alot, have my own company which is doing great.
    Just bought a new house and I now have a three year old son and of course my wonderful wife.

    I workout and play sports 4-5 times a week.
    We travel alot, last year we went to Venice, Rome, London, Paris, China, Greece and Australia.

    The most wonderful thing is to be able to eat and drink whatever I want again without worrying about it.

    I drink a couple of cups of coffee everyday, I can go out and grab a beer with my friends or share a bottle of wine with my wife again.

    There is hope, there is always hope.

    I was a down as one could be, I was so angry at everyone (even people on this board who tried to help me..).

    It really pains me when I read about people who sit awake at night typing cause they can't sleep cause of this horrible illness, just like I did countless nights.

    I just want to say, don't ever give up because there is hope.

    I'm not saying surgery is the solution to everyones' IC, but it was for me.

    The good thing with leaving the old bladder, is that the surgery is completely reversible.
    They can reconnect the old bladder quite easily if there is ever a cure or if something happens.

    Don't give up trying to find that ONE good doctor who can help you.
    They are few and far apart but they are out there.

    Don't let any doctor tell you that you are FINE if you are not. You would know.

    I hope everyone is doing well, and that you will find what's right for YOU

    One last thing;
    Don't underestimate the impact this illness has on your family.

    Only after recovering I realized how deeply me being sick had affected my wife, and how helpless she had felt seeing me wither away.
    Last edited by ICNDonna; 01-10-2011, 04:31 AM.

  • #2
    Ic

    I wonder though would this surgery would work for everyone? I am so happy to hear it has worked for you. If I was 100% certain it would fix me I would have that surgery done in a heartbeat.
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    • #3
      It's good to hear that you're still doing well. And Linda --- no, this doesn't work every time.

      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

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      • #4
        Thanks DW for letting everyone know how you are doing and what worked for you. How wonderful to have your life back!

        So you do not have any pain at all, like phantom pain? That is great! Will definitely do some research on this. You are right, it is devastaing to those who love you, sometimes they just can't understand. My hub's family is like that, they are just like "deal with it, get over it." Right...

        Congratulations to you and thank you so very much for the info. Take care and enjoy! Jill, wife of Bob

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        • #5
          Can't find anything on Koch's bladder

          I can't find anything regarding Koch's Bladder. Can you clarify if that's the name of the procedure or can you give me a link to some info about it? I am a 54-year old man with diagnosed IC.
          Last edited by wtotten; 01-10-2011, 11:29 AM.

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          • #6
            surgery

            Wow! what a great story. Can you tell us more about it, details. Do you have an ostomey of some kind? You mention a small opening that is covered, do you drain it yourself. Can women have this? Hope these questions don't sound too stupid. And also, your age? I know that surgery is somewhat knew, how did you locate the RIGHT doctor. Thanks ahead of time. Judy Gee

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            • #7
              Donna - what can you tell us about this?

              Hi Donna,

              You mentioned that this doesn't work every time, so I gather that you know what this man was referring to. I want to look more into this. Can you give me some google search terms or tell me what the medical term for this is?

              Bill

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              • #8
                Thanks for the replies!

                It is true this does not work everytime for everyone, though there is a good chance.
                This is what worked for me, it is quite possible something else might be what'll work for you just keep trying until you find it.

                What is good about this procedure is that I still have my old bladder and that the surgery is reversible in the sense that the can just reconnet the urethers from the Kidneys to my old bladder again.

                I'm sorry you can't find information about it.
                It's called Kochs bladder or pouch and should be listed under urostomy.

                I have no pains whatsoever thankfully so I am very pleased.


                Again I'm not urging everyone to go and have this done, this is a last resort and all the other options should be tried first.

                I just figured it would be nice to know that one CAN come back to life again after this, even if it takes years to find your "cure".

                I just sat with my wife last night doing some paper work, drinking a big glass of orange juice and just told her "you know I NEVER thought I would be able to drink orange juice again without getting horrible pains and discomforts and worrying about how bad it would be this time".

                People who are at that stage now, don't give up please there is a very good chance that you will find relief.

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                • #9
                  How is this working out so far?

                  Thanks,
                  Bill

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                  • #10
                    Wow, thanks for sharing your story. I read it with tears streaming down my face, your story really hit home for me. I have been dealing with symptoms for over 10 years and know the struggle and suffering well. There were many times that I felt like I was losing hope and that no one understood what I was going through. I think I too finally found a doctor that cares and LISTENS and I'm finally feeling hopeful that one day I will be myself again. Thanks again and keep sharing your story!

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                    • #11
                      Hopeful,

                      Did you have this procedure done?

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                      • #12
                        Originally posted by wtotten View Post
                        Hopeful,

                        Did you have this procedure done?
                        I did not have this procedure done. I just started with bladder instillations and seem to be getting some relief. Knowing that other people are out there going through the same things, having the same feelings really helps. Reading success stories gives me great hope .

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                        • #13
                          OK, thanks. I would sure love to hear from anyone who has had this done, whether it worked or not. I hope you get better. Be strong and don't ever stop looking for a solution.

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