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  • Judith56
    replied
    Teresa- you are VERY welcome, that's why I am here.

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  • Snowden1
    replied
    Judith,
    Thank you so much for taking the time to explain all this to me. I now have a better understanding of what all these surgeries involve.

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  • Judith56
    replied
    Yes, like I said pain was not the chief issue for me- it was constant frequency.When they finally took out my bladder my functional capacity was 30 cc's. Not everyone who has IC experiences constant pain. If I had to hold my urine then it would hurt, but if my bladder was empty, then it did not bother me. I did have urethral pain that came and went. The problems I had from the augmentation were that I went into permanent urinary retention an could only urinate by cathing my self. I also began to form bladder stones and began getting UTI's which till then, had never had. They rarely do that surgery for IC patients anymore and if it is suggested to you, question the doctor as to how many long term success he has had with IC patients. Also ask if they would be willing to speak to you.

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  • Snowden1
    replied
    Did you mean to say you did not have pain? May I ask what problems you had with that first surgery?

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  • Judith56
    replied
    Yes, Teresa I had my bladder and urethra removed at the same time. That was back in 1986 and I am so happy that it was done that way.. Before that surgery though I had an augmentation cystoplasty done. In that procedure they took most of bladder out and replaced it with bowel. Since they had left the base of the bladder in and rebuilt it by sewing the intestine to it, I still had the symptoms that I had before the surgery. It also created new problems for me so 8 months later they went in and removed the rest along with the urethra. I just want to be clear though that I did have the surgery due to pain issues- it was mainly because my bladder had pretty much shrunk down to nothing so I had terrible frequency. While I did experience urethral pain it not every day, so I very happy that they took it out.

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  • Snowden1
    replied
    It seems like trying to keep your bladder in to find out if the pain would be gone would be a good choice. Then if the pain is still there, removal could still be an option. Judith, you did get yours totally removed, correct? Thank you, for the information and I will run all this past my dr.

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  • Judith56
    replied
    Since I am not a doctor, I can only say what I perceive from my own experiences, so do ask your doctor his/her reasons. The drawback of leaving it in, is that if you are having pain, the likely hood of continuing pain is still there. I have heard many stories of doctors leaving the bladder and urethra in and then the patient has to go back for more surgery to remove them. The reasons I have heard for leaving it in, is that at a some time in the future you could always be reconnected, and by leaving it in the surgery time is shorter.

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  • Snowden1
    replied
    Judith,
    Thanks for the bday wish and the information of where to leave your body for medical purposes. I did not know this. Another question, I just talked to a Urologist here in Hershey, PA about bladder removal. They don't remove the bladder, but leave it in and divert the urine. What is the advantage or disadvantage to leaving your bladder in?

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  • ICNDonna
    replied
    I still have my bladder so I rarely post much here. However, just to clarify --- I did spend 25 years working in a major hospital and I absolutely assure you that no piece of tissue is ever removed without its being thoroughly examined.

    Donna

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  • Judith56
    replied
    Teresa, if you want to leave your body or parts of it for medical research, contact the nearest medical school or teaching hospital. Hopefully they will be able to give you the information on how to do it. I know Dartmouth college/hospital has in the past had people donate their bodies to them for such purposes.

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  • Judith56
    replied
    Scott, my advice for you is to channel your anger and frustration and find out who is doing research and question them directly.

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  • Judith56
    replied
    Happy Birthday Teresa

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  • Snowden1
    replied
    Thanks, Scott for the bday wish. I am only on Klonapin .5mg and Diluadid extended release pain med right now. Although, I have taken Macrobid serveral months ago for blood in my urine (more blood than urine) - but the culture came back saying it was free of bacteria. My blood did go away, though.

    I agree with you, although it seems our small opinions don't count in the grand world of medicine and IC. There is NO question that ic bladders should be researched. I know they take biopsies in some areas of the country and keep these in research banks. But, an entire bladder inside and out should be studied. Especially, in cases like mine and others who have severe IC - maybe there would be more clues.

    I didn't know that information about cancer. Thanks for sharing.

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  • sshannon74074
    replied
    Happy B-day Teresa!

    On the joint pain...Don't know if you are on antibiotics but almost every antibiotic I've tried gives me joint pain. Cipro and Macrobid being the worst. After a weeks worth of Macrobid it took three months for the pain to go away in my hips and knees.

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  • sshannon74074
    replied
    Hippocrates had described several types of cancers as early as 460 BC. He did this by examining the tissues of affected individuals. That's where the name cancer, greek for crablike comes from.

    If removed bladders from people that have suffered from IC for many years are simply being thrown away in 2011....I'm sorry but that's pathetic, at best


    Scott

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