Otherwise I have to pee. What can I do about this???
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In a flare slightly.....can not stop moving....
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Thanks. I should be drinking more....that is 1/2 of my problem.
I don't really pay attention to what I am eating. I mean I stopped eating tomato soup cause I thought that did it. I am just not sure.
I called the doc on call and he said he has no idea what to give me. Take my elmiron that will help. WTH>?? I mean come on...elmiron will not help me stop being jittery and having to pee.
Diagnosed with IC 3-30-2003
Flare ups 1 time a month lasts for days.
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Maybe you can try some of the over the comuter stuff for bladder problems. It is like generic pyridium. I buy it at wal-mart and it's called cystex. It helps me if I take one right at the beginning of a flare.
Good luck,
MelissaWith God all things are possible...............
I.C. Diagnosed Aug 2005
Recurrent UTI's
Hx of Kidney Stones
Migraines
Treatment:
Elmiron 100 mg 2 x's day(stopped again for hair loss)
Aviod certain foods/drink
Drink lots and lots of water
Birth Control pill to stop ovulation flares
Cystex as needed
Tbs of pure honey
Matthew born 4/5/09 Our Miracle baby
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AZO is another over the counter brand that you can buy. Some dr's really don't know much about IC. I told my PCP that I had IC and how painful it was, he said the same thing about the Elmiron. I left there shaking my had, Elmiron doesn't help with your current pain, if it helps heal the bladder lining then it will help in the long run. Some of them just have no clue.Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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There are studies that have shown that Elimiron taken orally only 30% will actually reach your bladder. That is why my uro has me do instills at home with elimiron. I agree, over the counter azo or something like that could help now or get a script for pyridium or like. If I have done too much physical activity that will cause me to have the urge. Drink lots of bottle water. That helps.Hope you are better soon. Also when the first uro gave me Elimiron to take orally she told me it could take 3 to 6 months before I felt any relief, who knows?
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I have not been back to my urologist for a while now. I need to go back...there are so many things that we can be doing and are not. I have never heard of the at home instillations til I wrote on here. I have a hard time taking Elmiron correctly. I am always hungry is the problem. So I would take it and then regret it cause I get hungry. You know??? My flares are not as bad as they have been. I just hate this.........
Diagnosed with IC 3-30-2003
Flare ups 1 time a month lasts for days.
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Way to get the amount of water you need
When I want to be sure that I get my 8 8oz. glasses of water a day, I will write the hours down on paper (8am-6pm or whatever time you get up) and then figure out the best times to drink the water within that amount of time BUT I cannot leave the house. When I start drinking the water, I REALLY have to go alot.
They say to try not to drink water after 6pm. That way you can "hopefullly" get rid of it before you get to bed.
I also drink my water at room tempature. I found it is easier to get down that if it is cold.
Kim
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Good idea. See there is so much I don't know. Funny thing is I don't care for my water when it is too warm. LOL
Knock on wood....I have not been having an issue with getting up in the middle of the night lately.
Diagnosed with IC 3-30-2003
Flare ups 1 time a month lasts for days.
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