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  1. #1
    Registered User rosealee's Avatar
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    Unhappy Hunters ulcers in the bladder

    I was told a couple years ago that I have Hunters ulcers that hurt and can be hard to get rid of. I am taking Elmiron to coat my bladder and this has to be helping but I want my ulcers to heal. If you have these ulcers to or know about how you can heal them please give me a message on the message board. I have 3 Hunters ulcers now in my bladder and if I lift to much they can break off and bleed. Has this happened to anyone else? I get them burned off but they come back.

  2. #2
    Forum Manager ICNDonna's Avatar
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    I have Hunner's ulcers. I haven't had them cauterized. After I have a hydro, I feel good in spite of the ulcers so I don't think they actually are a pain cause for me.

    Warm healing thoughts,
    Donna
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    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.

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  3. #3
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    Hunnar's uclers

    These are named after the German pathologist who discovered them in the early 20th century.

    As my Taber's Cyclopedic Medical Dictionary, 17th Ed, puts its, "[Hunnar's ulcers] are believed to have the same [cause] as Interstitial Cystitis." There's a universe of pain and misery behind that simply sentence, isn't there?

    According to my diagnosing uro, one of the country's leading clinicians in the treatment of IC, Michael Kaplan MD, Hunnar's ulcers is the most extreme kind of IC and usually leads to bladder removal and reconstruction. Which, I've read, doesn't get rid of the pain. Sometimes, this disease seems, to me, almost Satanic.

    I'm "fortunate" enough to have only "cascading" blood vessels showing in my bladder. I went off Elmiron for about a year because it seemed to have done all it would do. But I'm in the midst of a moderate flare for the past three weeks (my longest flare was more than two years) and my wife's picking me up a new supply of it. Hopefully it will, ah, ease the passage that's been very difficult lately.

    But your cases help to put mine into perspective.

    Both of you ladies have my prayers and best wishes.

  4. #4
    ICN Member Dixiefireball's Avatar
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    Post

    i had/have three hunner on my bladder yes they are very painful i had my removed(hunners) on may 19 04 they was cut off but my doctor said that my blood vessel was feeding them so quickly they would be back shortly I DO BELIEVE they are already back they have to be small at this point or i hope so anyhow. they was very huge when he took them off.
    I do hope yours is the kind that can be treated by elimron or dmso, cocktail treatments. if not maybe he can take yours off and they may never come back.
    I wish you well
    sending you hugs and prayers
    Rhonda
    Last edited by Dixiefireball; 07-31-2004 at 04:21 AM.
    Medicine taken daily or as needed:
    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
    2. MS.Cotin 100mg 3x daily
    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
    4. Fentanyl 100 mg Change every 48hrs.
    5. Gentamicin 80mg install after each rescue treatment
    5 Leviquin 500mg self start as needed.
    6. Klonopin 1 or 2 daily as needed.
    7. Prosed/DS as 1 every 6hrs as needed.





    I have IC, but IC doesn't have me anymore!

  5. #5
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    So Sorry Rhonda...

    Your story really makes me ashamed of my occasional, "woe-is-me-why-is-this-happening-to-me-Lord" moments.

    So, it is true. There is still pain even after bladder removal. Makes you wonder why they do it, but if your bladders nonfunctional, I guess you've no other choice, do you?

    God bless. I can't even imagine the courage, guts and tenacity it's taken you to make it this far. Yours is an inspiring story.

    PM

  6. #6
    ICN Member Dixiefireball's Avatar
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    i'm sorry pain man i didn't make my self clear I still have my bladder I had my hunners and scar tissue removed from my bladder in May 2004. I'm sorry I wasnt more clear.
    Medicine taken daily or as needed:
    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
    2. MS.Cotin 100mg 3x daily
    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
    4. Fentanyl 100 mg Change every 48hrs.
    5. Gentamicin 80mg install after each rescue treatment
    5 Leviquin 500mg self start as needed.
    6. Klonopin 1 or 2 daily as needed.
    7. Prosed/DS as 1 every 6hrs as needed.





    I have IC, but IC doesn't have me anymore!

  7. #7
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    Apparently I read more into your message...

    ...Dixie than you intended.

    I wasn't aware the ulcers could be removed. My diagnosing uro told me that it meant bladder removal was inevitable.

    Wow, even doctors don't know it all.

  8. #8
    ICN Member
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    Unhappy I think I have IC; Hunner's ulcers?

    I had an episode last week when I started to see blood in my urine; quite a bit of it. Urynalysis had white and red cells in it and also other stuff;(as my Dr. said). Burning, and frequency. He put me on macrobid and pyridium. Some of the symptoms subsided, but still have freq. and some sensitivity all the time. I think that may have been an ulcer that hemoraged. My Dr. wanted to start me on elmiron to see if it helps. I'm not sure if I want to. I'm nervous about side effects. I'm going to a chiropractor for adjustments, and trying to reduce stress. I have 2 dogs, ages 7 and 15 mos. and just got a little puppy, I think that added alot of stress, and made me have a flare up. I also lifted something heave and I think that's when the bleeding started. Can anyone give me some advice?

  9. #9
    ICN Member tbabbitt's Avatar
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    i have had IC for 12 years. It was just recently that they found the hunners ulcers. They injected steroids into the ulcers and around the ulcers. Happy to say that this has helped tremendously with the pain Been off pain meds for 2 months. I was told this could be done again and again.
    Tracey Babbitt DX 2005

  10. #10
    ICN Member
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    Quote Originally Posted by Pain_Man View Post
    According to my diagnosing uro... Hunnar's ulcers is the most extreme kind of IC and usually leads to bladder removal and reconstruction. .
    I realize this post is from quite a few years ago, but wanted to point out that this information is incorrect.

    The majority here on ICN who have been diagnosed with Hunner's Ulcers are able to manage their IC just as well as those who do not have the ulcers.

    I have not seen in my 8 yrs on this board that those with Hunner's ulcers are likely to need bladder removal or reconstruction.

    Most IC patients find relief for symptoms thru diet, medications, instills, supplements, physical therapy and such. Bladder removal and reconstruction is sometimes necessary, but rarely, even in patients such as myself who have Hunner's Ulcers.
    Symptoms started Nov 2003.
    Diagnosed Nov 2004.
    In remission since Aug 2009.

    Favorite quote: "Moderation kills." ~ Dr Caldwell Esselstyn, Jr.


  11. #11
    ICN Member
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    Used cookbooks for sale

    Does anybody have used cookbooks for sale?

  12. #12
    ICN Member becca79's Avatar
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    a little curious

    Do all IC patients have blood in their uine or only those with ulcers? The reason I am asking is because I was diagnosed 3 yrs agowith IC and not until the last 10 months have I had blood in my urine but then agin I have kidney stones. Butm I have had blood wthout any stone or infection in fact a lot of blood like starting your period blood and I had a complete hysterectomy. Im just curious I go for a hydro in the next wk or so Then I will find out for sure

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