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  • Hello! I'm new.

    Hello, all.

    I'm new here after about two weeks of lurking/reading. I'm a 37-year-old mom of two preteens and have an awesome, supportive husband. I was diagnosed with IC this morning, based on symptoms and history.

    I've had what I thought was recurrent UTIs since I was a young child--as long as I can remember. I've always known that if I drank too many Cokes, too much orange juice, took bubble baths, and as an adult alcohol and air travel, that I might get a UTI (3-5 per year). Now, of course, I realize that it was IC all along.

    I'd never heard of IC until about 2 weeks ago. I've been experiencing the worst symptoms of my life, every day for about 6 weeks. It has been different this time--lying in the bed crying in pain for hours every day. At the beginning of the UTI, I even had vomiting. The highlight was when returning on a long flight, I became violently ill during the boarding provess. And guess what color your vomit is when on Peridium... It wasn't pretty.

    But I could cope with the pain, knowing that the antibiotics would soon work. After the antibiotics didn't work, my primary physician ran a new culture, which came back clean. At that point, based on history of UTI symptoms, she believed I had IC and referred me to a urologist. Lots of other details, but that's the Reader's Digest version.

    I read everything I could get my hands on about IC, quickly finding myself here, and it has been a TREMENDOUS help! I also read journal articles on IC. Based on all of that information, I added Cysta-Q, Prelief, Prevacid, stopped my multivitamin, added a Benadryl, and altered my diet. I knew beverages could cause issues for me, but I had NO IDEA that foods could as well!!! I have IBS, too, so much of what I've learned is good for that, too. (On that note, I don't mind giving up sodas and juices forever, but I do wish there was an alcoholic beverage I could enjoy in moderation occasionally in social situations. And I know it will seem silly to you all, but to give up tomato products and spicy foods like tacos is really depressing to me. Ah well, I'll sure do it for now if it could make the pain go away.)

    I've been on Sanctura and Peridium for about 2 weeks (from my primary physician), and I am so thankful for what they have accomplished!!! Before, I was visiting the restroom every hour, 4-5 times at night, and had constant urethral burning and pain in my bladder. I present on a regular basis to large audiences, and the frequent breaks were disruptive and embarrassing. Now with the medication, I'm "aware" of my bladder, but I don't feel pain. And the urethral burning is greatly decreased. The frequency is completely resolved!!! Hooooray!!!

    Today, my new urologist prescribed Elmiron, Tagamet, and Atarex to add to the arsenal. She also ran a blood test to see if I have Sjogren's, since I have super dry eyes. (A few montsh ago, my son's ophthamologist noticed my eyes were red and asked to do the dry eye test. Now I use Restasys). But I don't have dry mouth, so I think (hope) I don't have that. Since I have chronic heartburn and tend toward anxious (especially since this started), the medications all seem like okay choices.

    I really want to believe I can just be normal again. I suppose that's what everyone here longs for.

    Thanks for listening!

  • #2
    to the IC Network. It sounds like you have found a good doctor.

    Warm hugs,
    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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    • #3
      Thanks, Donna!

      Comment


      • #4
        Yes the tomato products were hard for me too. At some point I will try adding some back in to see what happens but my bladder has been calm for quite a long time now and I kind of hate to stir the pot at this point. I did however try a pear martini at dinner last week and had no irritation, no frequency, and no pain so I'm glad to see I may be able to have one once in a while when I go out to dinner. Sounds like you have already found some things that work for you. You're lucky, as I tried so many things in the beginning I started to feel like a walking pharmacy. I never thought I would get a handle on this in the beginning but I did find what worked and have been pain free for quite a while. It took a long time of eliminating coffee, caffeine, wine, and citrus for me to see a difference, but it paid off. Good luck to you. Sounds like you're off to a good start with a good doctor.

        Comment


        • #5
          That gives me so much hope, earthlady! I suppose I feel like I can get through anything if I feel like I'm making progress to getting better. Looking back, I realize I've always eaten a very high acid diet, so those are the things I enjoy. Your positive pear martini experience is one I'll hope to imitate I wonder what they mixed with the vodka? I know it's a long way off, but something to anticipate in a few months perhaps. Thank you for the encouraging response!

          Comment


          • #6
            Welcome to the forum, sorry IC has brought you here.

            Sounds like you found a good Dr. and have started taking all the usual meds.

            If you are already taking all of them and are doing okay, then the next part you can just ignore.

            It is just some of the meds can have various side effects, some no problem, some bad enough to make you stop taking them. People with IC seem to be more prone to being sensitive to medications too, or at least in my opinion. Reading posts you often read how this or that disagreed with people.

            Anyways a rule of thumb for me when trying any new meds is I try one at a time, for at least a few days, for me actually it's one a week. Sometimes you can react to the first pill, other times it can take a while for adverse reactions to occur as the medication builds up in your system.

            If you start more than one new med at a time and you have a problem you won't know which one it is, and may have to quite all of them and go back and try them one at a time to figure out which is doing what too you.

            This also applies down the road when you are trying foods to see if you can add them back in. Add one at a time and give it a few days before trying anything else.

            I don't drink alcohol but I have read here that some people find beer helps them. Everyone is so different, just because one person can eat or drink something does not mean that the next person will be able too.

            I know just about anyone here that has been here for very long will sound like a broken record, follow the diet to the T. You can add foods back in in the future, just because you can't eat it now doesn't mean you will never be able to eat it. Your bladder needs time to settle down.

            The diet is a bit hard to get the hang of to begin with. Print out the IC diet and stay with foods in the safe list. What often happens with newcomers, me included, cut out quit a few of the foods and figure the diet is not working for them, but you need to cut out all offending foods. This gives your bladder time to settle down, I would say for at least a few months. If you cut out most of the foods but keep eating some offending foods then your bladder is still continuously being assaulted, so it will feel like it is still reacting to everything and that cutting foods out doesn't help you.

            Once you cut out all possible offenders, then when you eat something that bothers your bladder then you know it bothered your bladder, no question about it.

            Also once your bladder is feeling better and you are not eating food that will bother it, then you maybe able to cut down on some of the medications you are on, you will be able to figure out which ones help and which ones don't help you as much or not at all.

            I know this has gotten long per ussal for me.

            Good luck MG
            My are with you all. May you all find a way to peace and joy in your lives.

            Comment


            • #7
              Sorry you have IC! But this is the best and most informative network so remember you are not alone! I too was just Diagnosed and look forward to coming here it's like therapy!

              Comment


              • #8
                Hello,

                Your love of spicy foods is not silly to me! For the longest time, I ate a jar of the hottest salsa I could find every week. Jalapenos? I'd eat them straight out of the jar--yum. Yes, my diet was very acidic.

                I'd had just begun to appreciate coconut ice cream when I discovered I was allergic to dairy. Sooo....coconut sorbet is next!

                I've found the IC diet to be extremely helpful. I'm feeling much better than I did three months ago. I've had the occasional glass of white wine with no consequences; however, I haven't tried beer yet.

                I'm still shying away from tomatoes, chocolate, citrus fruits and caffeine. I feel that those items were my primary triggers.

                It sounds as if you're off to a good start. I hope you are feeling much better soon!
                March 2011-Symptoms began
                May 2011-Tentative diagnosis by OB/GYN
                October 2011-Confirmed diagnosis -- IC/PFD

                Current treatments:
                Elmiron- 300 mg (Began 12/11)
                Hydroxyzine- 50-75 mg (Began 7/11)
                Tizabidine- 2mg 3xTID, if needed (Began 12/11)
                IC Diet-Began 5/11
                Pelvic Floor Therapy-Began 12/11

                Current Supplements:
                Cystoprotek
                Magnesium
                Fish Oil
                Biotin

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                • #9
                  Thank you for all the great information! I appreciate your taking the time to do that. What you say about introducing one medicine at a time makes so much sense. And about sticking to the diet completely until my bladder is better is helpful, too. I'm afraid I continued to cause problems before finding this site. Still, I don't know everything about the diet. I need to learn more about what I keep reading as "problem ingredients." Thanks again for your kind response.

                  Comment


                  • #10
                    Originally posted by BiblioGrrL View Post
                    Hello,

                    Your love of spicy foods is not silly to me! For the longest time, I ate a jar of the hottest salsa I could find every week. Jalapenos? I'd eat them straight out of the jar--yum. Yes, my diet was very acidic.
                    !
                    Glad to hear I'm not the only one who is missing out on the tomatoes! The love some feel for chocolate is what I feel for ketchup and tacos (er, not together, of course). Thanks again!

                    Comment


                    • #11
                      Originally posted by Renate View Post
                      Sorry you have IC! But this is the best and most informative network so remember you are not alone! I too was just Diagnosed and look forward to coming here it's like therapy!
                      Lurking has been therapeutic for me Thanks for the warm welcome!

                      Comment


                      • #12
                        Some people can get away with eating a bit of fresh tomatoes in season.
                        My are with you all. May you all find a way to peace and joy in your lives.

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