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Trying to Gain Perspective

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  • Trying to Gain Perspective

    Hi Everybody,

    I was tentatively diagnosed with IC 3 weeks ago, after only a week and a half of sudden onset symptoms. I was incredibly fortunate and found a doctor (one of the expert presenters on this website) who saw me right away and began heparin, lidocaine instillations the same day. I take one a week (I've now had 3), and will see the doctor again to discuss progress and develop a treatment plan a week after the fourth one. The first two seemed to help a lot. This week has been more difficult. I think my symptoms may be kind of mild to moderate, from what I'm reading in this forum. Mostly, I just feel like I have a bladder infection all the time. My bladder just kind of buzzes at me 24/7-sometimes more loudly than others. I've developed some urgency this past week, but frequency is not a big issue (yet). Unfortunately, my bowels have gotten really messed up for the first time in my life, and I've lost a lot of weight because I'm afraid to eat anything.

    I have no significant health history, and at 58 had really taken good health for granted. I don't doubt that I have IC-the symptoms are classic. I'm wondering if there are people on this forum who can give me a little perspective. I'm really struggling to assimilate a lot of new and frightening information with very little sleep. Trying to think around a noisy bladder is a daunting task, and I'm not always successful. My personality is changing, as I am becoming extremely emotional, and am obsessing about this with almost no break. I don't feel like myself anymore, and I am unsure about this strange body I now live in. I'm starting to feel like a stranger with my own family (they have been awesome), and I don't want that to continue.

    I get a lot of comfort when I read posts on this forum about people who look back on the first months/year after diagnosis as a difficult time that is now better. I'm trying very hard to pull back from the details of this, and look at a bigger picture. I would love to hear from people who have walked through this process successfully. Will I ever feel like me again? Will I stop feeling as though everyone else lives in a different world than I do? Does this get better sometimes?


  • #2
    I remember obssessing before and right after I was first diagnosed (March, 2011). I will say that it has gotten so much better because I finally feel like I have a doctor that listens to me and is knowledgabe about IC. It has been a lot of trial and error but when I reflect back on where I was in Feburary and March, it seems like eons ago. Just hang in there and keep an open mind..and remember that most patients with IC eventually find something that works for them.


    • #3
      As a 36 year veteran of IC, I can say that you will have better days. Right now your bladder hurts! When that feels better, so will your outlook on life. There's a link to the latest food list in my signature below. There are many, many foods that are IC safe. I'll share what I ate yesterday as an example. I had to have a fasting blood test (I'm diabetic) yesterday so had a late breakfast. I was starved when we got back home so I had hash browns with two eggs along with my one cup of low acid coffee for breakfast.

      For lunch: 1/2 a peanut butter sandwich (late breakfast and we were going shopping so I needed something.)

      Dinner (cooked on the barbecue): Small steak, avacado, honeydew melon, baguette bread with butter, and ice cream for dessert.

      I encourage you to print out the food list and use it as a guide to plan some very nice meals. My family eats the same as I do --- I do add some things for them (like sliced tomatoes) that I can't have. Once you become accustomed to the diet it does get easier.

      You are still you --- you've just run into a bump in your life.

      Sending gentle welcoming hugs,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      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:


      Diet list:

      AUA Guidelines:

      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.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        I agree with Donna. I was very very sick when I first got IC and most days now, I feel pretty good. And I think I make some very nice meals!
        Yesterday's meals:

        Breakfast: Autumn Wheat Kashi, almonds, milk. Hot milk with Pero & sugar (Coffee substitute)

        Lunch: Leftover homemade stew with potroast, potatoes, carrots, celery, basil, garlic, salt; Trader Joe's roll with canola butter, 4 fresh dates; blackberry Hint water

        Dinner: Steak with mushrooms sauteed in canola butter & flavored with garlic & salt; Trader Joe's Organic Brown Rice (cooks in 3 minutes in microwave) sauteed with canola oil, diced red bell pepper, oregano, garlic, Trader Joe's fat free feta, and Safeway Organics garbanzo beans; green beans; nonfat milk

        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.

        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest

        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!


        • #5
          I've not been diagnosed long but some of our experience with IC sounds the same. I complained of UTI symptoms 24x7 as well, my treatment started out with DMSO instill and like you the first few helped but the last few didn't work at all, I think I felt worse by the time DMSO was discontinued. I'm now on Elmiron three times a day, Vesicare 10mg once daily and was recently started on Amitriptyline and Hydroxyzine and for now these seem to be doing the trick. I've tried other meds along the way with a few weeks of help them bam nothing at all.

          I'm sure you've read that all of us are different but please know there is hope in finding something that will work for you.

          IC diagnosis 3 weeks ago.
          Vesicare 10 mg once daily
          IBS and Gerd-Zegerid
          IC diet
          Elmiron 100 mg three daily
          Hydroxyzine 25 mg at night
          Amitriptyline 10mg at night
          Diovan 60/12.5 daily
          Topral 50 mg daily
          Zoloft 100 mg at night
          Klonopin .5 twice daily


          • #6

            I felt the same way as you!!! I was so incredibly low, and thought my personality would never shine again, or I would never be able to just "enjoy the small things in life again" My bladder was always yelling at me, and I hated my body. My family couldn't understand, although they tried and my poor boyfriend had not a clue what to do for me. It took a while- it has taken since JANUARY for me to find what works-- and when you have an angry badder that is a ETERNITY.

            Donna is right your bladder is hurt right now! And unfortunatley it can take a long time to get it to the place where it can calm down. The IC diet is a major help in calming it. When my bladder is hurting I eat lots of pears, eggs, chicken and drink almond milk. Watermelon helps me too!

            I know its hard to see past this bump right now, because I have been there and thought it would never end... but it does and it will. I like to also look at it as a bump in the road of life, something that we find balance with and learn how to deal. It might take awhile but it is possible!

            I have been on elmiron for 4 months now,along with hydroxizine and the IC diet. Those are the only meds I have taken, and the only meds that I would like to take! It works for me. It is true that ICer's find what works. I have recently introduced colostrum suppliments and they seem to help me stay feeling good. The last 2 months I have been feeling pretty well great with a few hurdles... namley when I ate a pound of blueberries... not smart... lol.. they are on the "safe list" but they are NOT safe for me. Is trial and error so just experienment with the safe foods on the diet and you will find something that helps.

            Before I figured out it was IC I was drinking a liter of cranberry juice a DAY and eating pizza pops because I could barley get out of bed. WELL I am cringing right now, because I know how much pain that caused me-- that I didnt even KNOW I was causing it!.

            Knowlege is power. Do ALL the research you possibly can and dont be afraid of the diet. Heck I'm starving right now just reading Donna and Kadi's posts hahahahahah....

            I still come here and read the good stories when I am having a bad day, they lift my spirits!! If I knew I was would be able to come back and say to someone new "its gonna be ok" I wouldn't have stressed so much in the beginning!

            Hang in there.

            28 yrs old,

            I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

            What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

            Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!

            Me in my graduation gown!


            • #7
              Thank you all so much. Your responses were really helpful. I've had some really good meals yesterday and today, and so far-so good. Amazing what a little food can do. I definitely feel better. It's also really encouraging to hear from people who have made this transition successfully.
              I hope that all of you know you really do make people's lives better.

              Thank you