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  • bladder infections

    I was the bladder infection queen, I'd get one or two a year for about the past 6 years. In the fall I started experiencing IC symptoms and after a postassium sensitivity test and a bunch of other stuff I was diagnosed with IC. i've been on Elmiron for 3 months now, I'm starting to feel a little better. I am still terrified of getting bladder infections. I know that symptoms of ic are similar but I know that the times that I had to go to the doctor I did have an infection. I'm so scared now. I'm nervous about having sex. I try to go to the bathroom right after. I drink mostly just water. I don't drink coffee or soda at all anymore. I'm hoping that with taking elmiron that I won't get bladder infections anymore. Has anyone else seen a difference? Sometimes I'll have pain in my urethra for no reason or some cramping when I urinate and I freak out that I'm having an infection. I know now that I don't but I just get so scared. I wish I could relax a little more. I keep azo test strips in my bathroom so that I can test to see if I have an infection.

  • #2
    I know that some people that are prone to infections take a low dose of an antibiotic either each time after they have sex or everyday. Maybe you want to suggest this to your dr. I have only had one documented infection in my life so this isn't personally a problem for me. Hopefully some of the other gals who have problems with infections will chim in.
    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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    • #3
      How different are your symptoms when you have a diagnosed infection? Many of us diagnosed with IC find that we really have an infection that is not found by the lab test. The test is able to find some bacteria, mainly E. coli, but there are many other kinds of bacteria that can get into the bladder and cause symptoms. They are not usually found since they do not grow enough colonies or they invade the bladder wall and hide from dectection.

      There have been new findings in the area of bladder infections and one is that they can gather in biofilms, or intracellular communities, and hide from detection and treatment. (Discovered by researchers in Scott Hultgren's lab at the Washington Univ. and published several years ago). The theory is that the bacteria hide and then re-emerge from the biofilm to cause another infection. But there are other species of bacteria that can do the same thing and are hard to detect without a more extensive culturing method. A broth culture is able to detect more kinds of bacteria that may be responsible for ongoing and chronic infections that are not diagnosed. A diagnosis of IC is made when no bacteria are found, but in fact there may be some present. United Medical Lab in McLean, VA is the only lab that will do broth cultures and they may find species that require a different antibiotic and longer treatment to eradicate.

      It is possible to have more than one species present at one time - and one may be isolated and another may not be. If one or both are treated with the right antibiotics for the right amount of time symptoms may resolve.

      Martha F
      Last edited by MarthaF; 05-09-2007, 12:40 PM.

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      • #4
        I have IC and used to get very frequent infections as well. My doctor put me on one antibiotic pill after intercourse a few years ago and I haven't had an infection since. It was really a godsend b/c no matter what I did before and after sex, I always wound up with an infection anyway. You might ask your doc about this.
        Kim

        Diagnosed August 2001

        Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


        Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

        I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

        *****************************

        “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

        “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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        • #5
          thanks, I'll ask my doc about antibiotics. I think the elmiron is helping. I haven't had an infection for about 9 months now.

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          • #6
            I haven't had an infection since I switched 100% to showers instead of tub bathing.

            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.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            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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            • #7
              I struggle with infections a lot and always have. I do everything I'm supposed to like only take showers, wipe from front to back, clean after intimacy, etc. But, it doesn't seem to make a difference. The last couple of years, it's seemed to be an infection ever four to six weeks. My uro has me on a low dose of antibiotics. I take it three times a week. THe first one worked for about a year. I only had maybe one or two infections that year. Then they started coming back more frequently. We just switched up my antibiotic again to help get them back under control.

              I would caution you with the AZO strips. If you're worried, please go in and have your doctor culture the urine sample. Probably only 20% of my infections show up before culture. 80% only show up in a culture. I think we feel them sooner with our sensative IC bladders. The other thing I found with the strips is the box says they're most accurate if urine has been in the bladder for something like four hours. THat's hard to do with an IC bladder when it's not feeling well.

              I also completely understand that panic that you might be getting an infection. Here's what I do when that happens. I start upping my water intake. Sometimes it can almost flush things out. I also carry Pyridium with me at all times. It doesn't usually help with my IC symptoms, but does help with an infection. I have it in my purse, in my suitcase, etc. (It's one item I don't leave home without!) Heat also helps my bladder feel better, so I travel with my heating pad packed and carry a stick-on heat pad in my purse. That way I know if I"m out and get hit all of a sudden (which often happens with infections), I at least have a first line of self-help defense.
              ~ Stacey

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              • #8
                I had a nasty infection about three months ago. I also dont trust those test strips. Mine always come back normal, but my culture shows I have an infection. EVen the ones that they use in the doctors office does not show my infections. I have to have a culture.
                I also have the antibiotic macrodantin that I take after sex, which is funny because my hubby and I have not even had sex in a long while due to all the pain I have, and when I have a good day, I sure done want to mess it up by having sex. It sucks! So I use my macrodantin before I do my bladder instillations just to hopefully help prevent a UTI.
                Jen

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                • #9
                  I went to my Uro on Wednesday and it ends up that I do have a mild bladder infection. I thought I was flaring this whole time. It's a good thing that I went in. And you guys are right, don't trust those azo strips cause mine kept saying I was negative for infection. They sent my urine out and did a culture and I do have an infection. Feeling a lot better today. I'm taking Keflex for 7 days. Hope i don't get a yeast infection. Yuck!

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                  • #10
                    I hope this means that once you get the infection cleared up you'll be feeling much better and not "flare-ish"!
                    Kim

                    Diagnosed August 2001

                    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                    *****************************

                    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                    Comment

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