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Sister in extreme pain How do I help

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  • Sister in extreme pain How do I help

    My younger sister (she's 48) has an extreme case of IC. Her specialist has told her that it's the worst case that he's ever encountered. She has IMSO treatments weekly, has had the bladder distention procedure several times, has had the controversial Botox treatment, and is on a dozen medications (most to do with the IC). They have even talked about removing her bladder, but the doctor says that there are too many instances where upon the removal, the IC starts attacking another organ.

    She is in constant pain and even when she tries to hide it, it's obvious in her voice. Many days she calls me crying that she just can't take it. She doesn't ever sleep due to the pain and frequency and pain meds seem to wire her up rather than help her sleep. She is at the point of having to self cath a couple of times a day, but even then she will have to go again in just a few minutes.

    The pictures of her bladder show that it is "shredded" with ulcers. When she has urine in her she's in pain due to the urine touching those open ulcers, and when she has no urine, the bladder collapses on itself and the open ulcers touch each other. The doctor has described it as her urine is poisonous to her and eating through the lining of her bladder.

    She has dealt with this for several years and it just seems to be getting worse. She has never ever gone into remission. In fact, with letters from her doctors stating the severity of her condition, she was approved for disability on the first attempt and within 2 months of filing.

    I live 1800 miles away and I just don't know how to help! I want to scream in my frustration of knowing that she is in constant pain and I can't fix it!!!

    How do I help her???

  • #2
    Re: Sister in extreme pain How do I help

    You are already helping her simply by understanding and offering an ear to listen. It can be very important to have a place to just plain ventilate. Do you know if she's following an IC diet? If she has computer access you might want to refer her here so she can ask questions. Without knowing what treatments she has tried, I can't think of any advice. I suspect the treatments she is having weekly might be DMSO instillations, which in some cases are very helpful. I'm not familiar with IMSO.

    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.

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    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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    • #3
      Re: Sister in extreme pain How do I help

      Donna,

      Yes, my mistake... DSMO is correct. She does follow the diet, but there are things that bother her that don't bother most people. Although as a vegetarian, I would guess that she eats vegetables occasionally that do indeed cause it to be worse. She is progressively getting worse by the month.

      As the "big sister" I want to make it all better!

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