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  • Anyone from Australia here?

    Pls repond - looking to share information and experiences.

    K

  • #2
    Hi Kristie,
    At last a posting from oz. I was begining to think that I was the only one here with i.c.
    I was diognosed about five years ago and have tried most things with only moderate improvement.I have been reading messages on this site for some time now and it's been a godsend, and without iwould still be groping in the dark but it would be nice to trade experiances with someone nearer home so I look forward to hearing from you Kristie..
    If you want to e-mail me direct my address is [email protected] All the best Mike. p.s. Thought you should know - I am a sixty year old male. Although our anatomy might be different the problem is the same.
    Originally posted by Kristie:
    Pls repond - looking to share information and experiences.

    K

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    • #3
      Hi Mike
      Great to hear from you.This site has opened my eyes to the fact that men suffer from IC equally. Do you find that you are treated differently due to the fact that the majority of sufferers are women?
      I'm actually writing on behalf of my Grandmother, who is now in her 70's with severe IC for the past 3-4 years. We have had real problems with doctors here (Sydney). Lack of knowledge of the condition coupled with their lack of interest in identifying or exploring alternate possibilities for treatment has meant that I am now trying to make myself the expert! I think the pain management section of this site really sums up my Nanas experience - doctors think she's just a little old lady with incontinence problems. As for the pain, although they dont say it, its obvious they suspect that most of it is in her head and that she is now a morphine junkie. She has tried Elmiron (severe allergic reaction), stretching the neck of the bladder (minimal temporary relief), coating of the bladder lining (severe pain reaction), sacral nerve stimulation (about 20% relief but doctors refused to implant it permanently) and now just treatment for the pain with morphine + additional drugs to enhance the effectiveness of the morphine. The doctors are refusing surgical options, but from my research, it looks like there are no guarantees of pain relief. Also of concern now is the fact that bowel movements seem to massively increase her pain for a few days. I'm now looking at some of the anti-biotic treatments (Dr Fuguzzo?) and the auto-immune treatments. What treatments have you tried? What has your experience been like? KNow any good doctors in Sydney? I found a research article written by a team in the Royal Womens Hospital in Melbourne - going to ring them today (18.7.00). Will let you know what eventuates.
      Speak to you soon,
      Hang in there!
      Kristie

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      • #4
        Hi Kristie,
        In answer to your questions.
        There is no special treatment for men as far as I know and we get the same treatment as women.
        I can understand your grans frustration with finding a sympathetic doctor.I have found that most G.P.'s don't know what i.c. is and show little interest and you get the feeling that they rather you'd go away and find some other doc who does know something about i.c.
        Does your grandma belong to a suport group? If not there is sure to be one in Sydney and if you contact them they will be sure to know the best doctors to contact. It's very important to find the right one.
        I have been through most of the treatments that your gran has with practicaly no effect on my condition until I had a nerve stim trial- two in fact; the first did'nt work- it was in the wrong spot. The second was still not quite right but was near enough to make a bit better than 50% improvement so I am now waiting for a permanent implant. Was your grans trial hitting the right spot I wonder? Some people have had as many as three trials before they got it right. Of all the treatments I've read about on this site it's the only one that seems to work for most. It's not a cure of course but it gives most some sort of life.
        A pity you hav'nt had a better response from people in oz, some i.c. sufferers must have computers besides us two!.If you havn't already done so , post a note on one of the more general boards and I am sure you will get plenty of help. If there is anything I can do to help please ask. When my implant has been done { hopefully in two or three months] I'll let you know how I get on. Keep at it for your grans sake.I know what it feels like,most people who have not experienced it have no idea.
        Best of luck.. I'll watch out for you.
        Mike.[QUOTE]Originally posted by Kristie:
        [B]Hi Mike
        Great to hear from you.This site has opened my eyes to the fact that men suffer from IC equally. Do you find that you are treated differently due to the fact that the majority of sufferers are women?
        I'm actually writing on behalf of my Grandmother, who is now in her 70's with severe IC for the past 3-4 years. We have had real problems with doctors here (Sydney). Lack of knowledge of the condition coupled with their lack of interest in identifying or exploring alternate possibilities for treatment has meant that I am now trying to make myself the expert! I think the pain management section of this site really sums up my Nanas experience - doctors think she's just a little old lady with incontinence problems. As for the pain, although they dont say it, its obvious they suspect that most of it is in her head and that she is now a morphine junkie. She has tried Elmiron (severe allergic reaction), stretching the neck of the bladder (minimal temporary relief), coating of the bladder lining (severe pain reaction), sacral nerve stimulation (about 20% relief but doctors refused to implant it permanently) and now just treatment for the pain with morphine + additional drugs to enhance the effectiveness of the morphine. The doctors are refusing surgical options, but from my research, it looks like there are no guarantees of pain relief. Also of concern now is the fact that bowel mo

        Comment


        • #5
          Kristie,

          Hello down under in Australia! First, you've done a wonderful service for your grandmother by getting to this web-site. I am an Interstitial Cystitis suffer and since 1992 my life was made nearly a living hell from the disorder. It is extremely painful and debilitating. Believe me if your grandmother cries from pain or is nearly half crazy from pain, she IS NOT over exatterating. I cannot imagine the suffering of your grandmother is in at 70 with this disease. But, here is how you can help her immediately: She should not drink anythink with caffine! Period. No chocolate, drink only decaffinated coffee, or decaffinated tea. Apparently, Elmiron does cause an allergic reaction in some people. I personally had an allergic reaction taking Elmiron three times daily but now I take twice daily and no problem. Additionally, many IC suffers use a mast cell suppressor drug called hydroxine sold in the US under the brand name of Atarax or Vistaril. It has long been believed that IC patients have mast cells in the bladder which invoke a histamine response. Try to get her doctor to prescribe hydroxine and reduce the dosage of Elmiron to twice daily. Tell the doctor in Sydney that US doctors often reduce the Elmiron dosage if a rash or allergic reaction occurs. This is my fourth month on both Elmiron and hydroxine and I FEEL REBORN! Practically no pain and the urgency frequency is substantially reduced. At my worst point, I was getting up 8 times a night to pee! Apparently her doctor knows very little about this condition, please write or have her physician contact these sites for the latest information on Interstitial Cystitis:

          Interstitial Cystitis Association (ICA)
          51 Monroe Street
          Suite 1402
          Rockville, MD 20850
          Phone: (US) 1-800-HELP-ICA
          Web Address: www.ichelp.org

          Interstitial Cystitis Network (ICN)
          Attention: Jill Osbourne
          4773 Sonoma Highway
          PMB 125
          Santa Rosa, CA 95409
          Phone : 1-707-538-9442 (Leave a message &
          Jill will call you back)

          These two web sites will provide invaluable information to you and your grandmother's physician. I urge you to call these numbers for literature and help. The ICA and ICN have listings of physicians in other countries which are familiar with Interstitial Cystitis. Finally don't give up honey because I can tell you that your grandmother is in severe pain. Many with Interstitial Cystitis have committed suicide because the pain is so bad and many saw no hope. But hope is possible, I am proof. I was nearly incapacitated at 37 from this illness but thanks to diet change, Elmiron, and hydroxine -- I AM ON MY WAY TO GETTING MUCH BETTER. I will have this disease all my life but it can be somewhat controlled through proper medications, diet, and lifestyle changes. Also, don't let her eat any tomatoes and it is criitcal IC patients never be constipated. Why? Because my urologist at Emory University in Atlanta said an irritated colon aggravates the bladder. You might also want to have her doctor call mine at Emory. His name is Dr. Nail Galloway and his secretary's number is: 1-404-778-3809. Dr. Galloway is one of the leading IC doctors in the US and may be able to provide a reference in Australia. Good luck and God bless from America!

          Sherry

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