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ANYONE ELSE W/ IC?
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rickyracer42 posted:
I was diagnosed about 2 years ago, now, with IC, Interstitial Cystitis, a bladder disease, likened to urinary tract infections, that never leave! It is extreme pain, and I've done much to try to keep the pain under control, from bladder distillations, to diet, (or trying to do my best w/ this one!), and daily L Arginine, and prelief, and tramadol, and elmiron. Any other suggestions....anyone else been diagnosed w/ this ....I'm wondering, with this being a kidney disorders support group.....thanks, looking forward to any...and more...info on this painful disease, that has no known cure....Blessings,
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kat774 responded:
I have IC myself. Diganosed when I was 21 years old, so I have it going on 13 years. It is no fun. ichelp.org is a great site to look at. You seem to be on the right track with the med's that work the best for IC., but I will say everyone with IC seems to vary on how they respond to the different treatments/medications. It can be so frustrating the whole trial and error. I have just started acupuncture. Trying more natural approaches. Please feel free to e-mail me back! I'd love to hear how things are going.
 
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rickyracer42 responded:
I have not tried anything like acupuncture, however, have tried, the whole bladder instillation route. Having the bladder washes, seemed to, I say seemed, to keep the pain semi controllable, however, it seemed for me at least, to be right back where I was, when I stopped them, (due to my hubby loosing his/our health insurance, his employer, just dropped it one day, and has never given the men, any other choices!)....It's left us/me...in a bind, with that all...I stopped those, and have relied on the meds. I have pain, really everyday. Tramadol is the only pain killer, that really helps the pain. I guess, it's the least addictive, some even say it's not addictive, but I feel different. I am a Christian, so I as well, rely much on prayers. That helps much too. God is good, even on the rougher days. I've only had it, as I said, for about 2 yrs. now. I'm trying to get disability for it, It is considered a disabling disease, and I really haven't been able to work a steady job, as I have so many days, where I'm so very crampy. I've already applied and been denied, but am trying again. Anyways, thanks for chattn w/ me, about it all. feel free to chat again.
 
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TrudyGERD responded:
I'm not sure if my daughter has it or not. We finally found a urologist who DOESN'T have his head up his a$$ who would acknowledge that her problem isn't constipation or withholding and that her symptoms aren't normal and that rare in children doesn't mean impossible (I don't believe it's rare in children; I believe it just doesn't get diagnose until adult and kids are misdiagnosed for years). Unfortunately (or I guess I should say fortunately), her symptoms aren't in his opinion bad enough to warrant putting her through the full testing to diagnose so she isn't diagnosed. At this point, he's diagnosed her with allergic cystitis since she's guaranteed a flare if she ingests even the smallest amount of citrus or cranberry (yes, I know those are the worst IC trigger foods but hey, he's acknowledge cystitis and that these foods are real triggers).

Right now, we're only treating with dietary changes and probiotics. If we miss the probiotics, she always gets abdominal pain and at least minor UTI symptoms. She was recently diagnosed with some additional food allergies so I'm hoping that eliminating them will help her urinary issues and general abdominal pain even more. It's also very hard for us to separate her urinary issues from GI issues. They both always flare simultaniously.
 
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MartPQ responded:
Hi there, I've had IC for 6 yrs and have been on Elmiron and Vesicare and now I'm on Atarax....it's very true in that everyone reacts differently. The only thing that has finally helped me is following a very good diet (staying away from caffeine/fried/spicy/acidic foods/alcohol. I also had bladder distensions done about once a yr.
 
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lilycat98 responded:
Hi there. I have IC. I've been on Elmiron, Elavil and Hydroxyzine for a few months and had instills. Not much helped. But now I've been on both Cystoprotek and Desert Harvest Aloe for a couple of months. I can't say I'm cured, but my symptoms are a lot more tolerable that's for sure. It's weird because those are both over-the-counter and they work much better than my RX drugs. But I keep taking the RX drugs, too.
 
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wendy12301978 responded:
I have ic, dx in July of 09 but I have had the issues for years. Just finally found a doctor to listen even if just for a little bit. I "knock on wood' have been good for the last month or so, I have some pain and uncomfort but not as bad as I was. Right now I am only on my aniexty/depression med. I think the Elmiron that I was on for over a year actually made my symptoms worse. It was hard to tell because at one point I was on like 6 different meds. i stop them all but I really think it was the Elmiron causing the issue
 
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christinam4 responded:
Hi, I have not been diagnosed with it yet, I have to wait till 9th of Feb. I am currently taking vesicare. I also have Fibro. So I am on narcotics. It does not help with the flare of IC. It does not touch the pain. I have seen one urologist and he did not listen to me and assumed overactive bladder. So I will see a new dr. Good luck.
 
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defectivelady responded:
Like everyone else on here..I too have IC. I have pretty much tried everything and nothing works. The elmiron helped ease the frequent urge to go and the feeling that I had to go even though i had just gone but it didn't help with the pain. My insurance will no longer cover the elmiron and I can not keep doing the treatments where you go into the office and they put the chemicals into your bladder...i don't know if thats the instills or not... my boyfriend is laid off and i am on disability so we can't afford the gas to drive to the drs office several times a week to have it done. I have basically been told i just have to deal with the pain since i have been through everything and nothing works. I have been told by several doctors that i am a lost cause.


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