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  • New and Frustrated...

    I stood at the kitchen counter this morning wondering what I could eat. How about a slab of butter and some pear juice? Or a sip of milk and some buckwheat?

    I'm just not ready to embrace this yet. Like everyone else who is handed this diagnosis, I feel a bit lost and pretty angry.

    I've been nice to my bladder through the years. I eat well---with a focus on health. And suddenly, my bladder is acting like a two-year-old who is disgruntled with the choices put on his plate. "I told you I don't like tomatoes," he screams, "and get rid of this fruit." I decide my bladder is a brat, unable to be grateful for the fine sustenence put before him. Instead he has a tantrum and goes on with his picky ways.

    Or perhaps my bladder has joined a new church that doesn't tolerate wine or chocolate in its religion. I feel like dressing him up this Sunday and taking him to a new church. Perhpas one in New Orleans where the shrimp is tossed with cayenne pepper. See how he likes that.

    Food is a big part of my life---not the eating really, but the preparation. I grow my own herbs and tomatoes. Every night I orchestrate a play in my kitchen, with the standing ovation at dessert. I comb through recipes. I throw little parties and try new things. I'm not ready to throw in the towel and eat buckwheat for the rest of my life.

    I grew up having bladder infections. I'd cry in a very hot tub until we could get to the doctor's office. I had testing done and my urethra was widened.
    I became familiar with the hot, burning feeling in my groin but it always went away.

    This last year I've had a prevelance of infections, or so I thought. Funny thing was that my cultures started coming out clean. My bladder had become fond of the feeling, I suppose, and decided to make it permanent.

    I went to the urologist on Monday. He mentioned IC and then gave me some new drugs--a new antibiotic and then Prosed. What followed was three days of agonizing pain, the worst I had ever felt. Bladder spasms and burning and shooting pain. It was the medication, I think. It was supposed to make me feel better, but for some reason, my bladder struck back. This confuses me.

    So, now I'm popping pyridium and trying to sleep through a full night. I feel like my life has changed on a dime. I'm confused and await the testing....

    In the meantime, I have to forgive my bladder. It's not an easy thing to do.

  • #2
    ((((((((hugs)))))))))

    I truly understand.. Wouldnt it be nice if we could trade our bladder in for a new model and never have any trouble again..But does not look like that will ever happen..You know though as far as the food thing.. I have found soooo many things that are IC friendly you will just have to try the elimination trial..I beleive thats the only way you will be able to see what you can have and cannot have..I miss my tomatoes, but have found they have yellow low acid tomatoes that I am growing now, I tried one and they taste just like the red ones, well and a little sweeter and they do not bother me and others on the bored can eat thim to..So like I said you just have to try and see what works for you.. I hope you the best and if you need anything just let us know...


    Ronda
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment


    • #3
      Thank you Rhonda..

      For making me feel welcome.

      I am really upset today.

      A few minutes ago, this thought struck me:

      Why had I never heard of IC?

      If a doctor sees a patient over and over again for UTI's, wouldn't it be prudent of him to explain to the patient that he or she is at risk for IC and start measures right away? I should have been put on a preventitive antibiotic years ago, but now the damage is done. And when my urine cultures started coming back negative for bacteria, why didn't anyone think that was strange? Why did it take two years and three hundred glasses of tomato juice later for any suspicions to be raised?

      I am angry right now. I know it doesn't serve me to feel anger but truly, that's just how I feel. I've been heading right towards this diagnosis my whole life and I feel as if someone should have warned me that this was a one way tunnel and I was going the wrong way. I find my dealings with the medical community to be short sighted and ignorant---looking back now.

      I am fairly medically educated, having multiple sclerosis, going through breast cancer with my best friend (who died last year), helping other people with medical problems, doing research for them, but never, ever did I hear of IC.
      Even last year, when I typed in "constant urinary burning" and some other key words, did IC even jump into my landscape. I don't think I've ever seen a commercial about it or talked to anyone else who has this.

      And yet, it exists and I have it! And looking at it from an outsider's view, it doesn't sound like a whole lot of fun! In fact, it is completely life changing and somewhat devastating.

      And honestly, I don't really understand it. There are some many different theories, treatments and ideas about it... auto immune, genetic, injury....don't eat this, don't eat that....It sounds like a puzzle to me. It's hard to wrap my arms around.

      I am grateful for this website. Already, I am off buying things that have been suggested here---Azo, and I am going to the health food store tomorrow to buy the herbal remedies they give cats. I am going to do everything I can to get rid of this burning and discomfort. I am not going to stop until I can find a way to make myself better.

      Which leads me to my next question:

      Could the medication the doctor have given me--the Prosed and a new antibiotic have made this worse? It didn't hurt at all like this until I started taking this.

      And now that I'm in a huge flare (can't sleep, huge pain...etc) what can I do to help it? I have the heating pad, hot baths seem to help me, I'm taking AZO, have pyridium, not eating acid-type things...but what else can I do??

      Thank you.....

      Comment


      • #4
        I agree.... I was the same way I have always had bladder problems not really UTIs but always burning and painful sex and frequency, but like you the name IC was never mentioned.. The first time I had even heard about was IC was last year while I was in the ER with severe pain and an NURSE said have you ever heard of IC I was like waht is that? She explained it to me I was like I have had all those symtoms for years, but it just so happens I had kidney stones thats why the severe pain, But after the kidney stones were removed I talked to my uro about IC and he said yes its a possibility I could have it and a cysyo/hydro was performed and I got the Dg for IC..This network is what has answered all my questions not my doctor..I think thats why so many of us are bound and determined to get the word out about IC.. I have a white cap with the IC awarness ribbon on it and a charm bracelet and I even have shirts that have the IC ribbon on it and I make sure I wear them as much as possible.. I tell everyone what it stands for, If more people would do this then more people would be aware of IC

        Ronda
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


        Link to Patient Handbook:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment


        • #5
          Your post was truly poetic and heartfelt. I'm sorry your bladder has hurt you so badly, but have faith that you will heal it. I hope you get some new meds that don't turn your pelvis into a fire and that you can eat some of your favorite foods. I have been told that at the beginning, people feel they are intolerant to every food. After meds, after a bland diet, after rest... the bladder is supposed to feel better and more foods are added and generally tolerated.

          I hope you feel better soon!
          [SIZE="1"][B]Be well, Alyssa :hi:[/B]

          [

          Comment


          • #6
            I've always kind of looked at it this way: I love my little bladder and have felt sorry for the poor thing. What I hate is the disease attacking it, so to speak. I don't know why that's made a difference for me to see it that way, but it has.

            Anyway, yes, your medications could be affecting your bladder adversely. We all react so differently to different medications. Some of us are helped by one, while the same med might throw others into a bladder tailspin.

            I hear your anger - I remember it. It honestly will get better. Your feelings won't feel so raw after awhile. But when they are it pretty well sucks. Coming here and posting helped me a lot.

            Feel better.
            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


            • #7
              Have you tried water with baking soda? I have heard that you can put a 1/2 teaspoon of baking soda in a full glass of water and do this up to three times a day and it might improve your symptoms somewhat. Maybe you can try this until your dr gives you something else?
              Diagnosed with IC - March 2007
              Diagnosed with vulvodynia - June 2007
              -Lots of prayer
              -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
              -Taking Prelief as needed (stopped because of pregnancy)
              -IC diet

              Comment


              • #8
                Oh Margot, I am so sorry that you have to go through of this. Yet so happy that you found us so at least you don't have to go through it alone. to the IC network, we will all try to help you as much as we can.

                My hubby tells me that I'm addicted to this place, lol, because the people that are here understand what I'm going through better than anybody else.

                I know exactly how you feel about why didn't the dr's figure this out. After my son was born I remember going in for his check up's and shots and saying I felt like I had a UTI. They would always do a dip stick test and it would always come back with some blood (usually had my period) they would give me antibiotics telling me it was an infection and send me on my way. I even remember saying to the dr, isn't it weird that I'm getting all these UTI's so close together. He didn't think so, didn't mention IC. Now looking back I'm betting these were my first flares because I always flare around my period and if I didn't go to the dr for it it would just go away after a couple of days.

                As for pain relief. I have never tried the baking soda in water myself but it might work for you. When I'm in pain I usually just up my water intake a lot. You may pee more but I find that it helps with the pain. I'd rather be in less pain and pee more than more pain and pee less.

                IC is such a horrible thing but if you do infact have it then you can start treating it. As for the Prosed, I have never used it but when I looked it up it just seems to be another option for helping with bladder pain so it shouldn't have made you worse but maybe there's something in there that you are allergic to. I would bring that up with your dr on monday. Feel better soon
                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

                Comment


                • #9
                  HI Margot,
                  Your first post made me smile, I loved your sense of humor! But I totally understand exactly how you are feeling. I think most of us have felt or feel the same way. My faith in the medical profession is zero right about now. We all have our stories and we all have similar tales to tell of how unfair most of us have been treated over the years. It's pretty sad. As for your friend that died of Breast Cancer last year, I really can relate to that with you also, I had two really good friends die from it within 2 months of each other 2 years ago. I still think about them every day and really miss them, so I'm sorry to about your friend. I agree with you about giving up the foods we love, it's really hard, but I guess we have no choice, so hang in there. I'm glad you found these boards, they are a life saver.

                  Kari
                  Kari

                  I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                  Comment

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