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30 DAY IC Newbie!

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  • #1

    30 DAY IC Newbie!

    My name is Elizabeth and I was diagnosed with IC a month ago! My urologist says I have a moderate case. What a crazy roller-coaster ride this is! Frankly, I felt so good after the hydrodistention that I was certain I was cured!!! Imagine my surprise when I had another flare! I decided to proceed by eating the Bladder Friendly+ foods on the IC diet and then slowly add Try It foods. I resisted the Elmiron for a few weeks (because my hair is thin enough already!) but now I have been on it for a week. No other treatments yet. I have a couple of general questions that I hope some veterans can answer!

    Is there a diet list that is newer than 2009?
    Is hot water with honey BETTER for the bladder than natural Chamomile Tea with honey?
    Do most folks just do without a Multivitamin once diagnosed?
    What is the general advice about gentle Yoga for relaxing?

    Thanks so much everyone for your insights!
    Tags: None
  • #2
    Hey! Welcome!

    I have been on elmiron for about 4 months now! I think its working but I will give it a year or more to really see. This is really a roller coaster for sure!!! I have never had a hydro, and prob will never get one as they terrify me! I didnt want any of the invasive stuff... im more of a natural person. I have found some other stuff that works too! ... All of us have to find our things that work.

    As far as the diet, this one is pretty up to date, they keep adding stuff too it, but for the most part these are the food that are generally well tolerated, and have been for awhile. So no I dont think there is a newer version? Some of the foods on the friendly list are not friendly for everyone so it IS a trial and error thing. I found out the other day that I CANNOT tolerate blueberries. Maby a few, but not a bowl like I was eating haha... and it says it is a "friendly" food. So each person is different. Some of the caution things may not bother some either soo... its guessing game!

    I just drink honey and water ALL the time. I find it more soothing for sure! Tastes just as good or better to me than any tea, plus you dont have to keep changing your tea bag all the time because you drink so much! lol I drink like 4 cups of that in the morning when I work. Is it BETTER? I dont think it really matters. If you can drink chamomile tea (and I do ALL the time) then I say go for it, it is a soothing tea to begin with. The other tea I drink is peppermint as well.

    Most IC people cannot take a multi vitamin. I don't and havent' since this all happend, I would flare BAD if I did. I dont actually take ANY suppliments anymore. I used to alot, but then I couldn't figure out which one was flaring me... so I stopped and wa la, I felt better.

    Sometimes you just have to leave your body alone and EAT RIGHT to get all the veggies and nutrients rather than relying on a vitamin. I eat more than 10 servings of veggies a day now (which was a lifestyle choice .. a drastic one let me tell you ..lol) but a better one in the long run.

    I have not tried yoga yet but I WANT TOO. I would say it is amazing and loads of people have said its great because it relaxes the pelvic floor. I find that when I move around at work (I waitress) that my bladder dissapears for hours.... it helps me to do exercise. Even very physical exercise......

    Hope you find lots of info on here! We are all in the same boat!

    Jenn
    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!

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    • #3
      Many thanks, Jinny Jean!

      Wow, I really appreciate your insight. I am 55 had no idea that folks of all ages were living with IC. I have also considered acupuncture! I live in VT in the summer and in NC in the winter so I think I will wait until I am back in the south to find a good acupuncturist that I can see consistently for a while. I made some oatmeal cookies yesterday with all safe ingredients for me and I am beginning to feel that, with a minimum of effort, I can make this life change work and not feel too deprived. Thanks again for writing back- it's good to feel part of a group!

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      • #4
        to the IC Network. I know you'll find a lot of support and information here.

        The diet list is the latest one. It's not 100% for all interstitial cystitis patients, but it's the best list out there right now.

        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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        • #5
          Hydrodistension

          If it's any consolation, my hydrodistension lasted a week. I was in 7th heaven. Then at 2 am yesterday morning the pain came back, as well as the fight with the Uro who insists I don't have IC. I guess he doesn't think have anything better to do than shovel money into his coffers and drive 200 miles round trip so he can charge me for a 5 minute face to face meeting. Do I sound bitter??? I am.

          My problem is not with anything I eat or drink (with the possible exception of red wine), but more with pressure on the bladder. I also am suffering from some sort of pelvic floor problem which I keep asking them to address, but they ignore. My rectum is totally numb, the right major and minor labia are numb and my clitoris tingles all the time. I have rectal leakage with skin damage and sores. So much fun!!! The sight of the sores doesn't seem to have any impact on them. It would make me wonder if something was going on but then I get the feeling that they are really rushed and don't listen or pay attention.

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          • #6
            Fluffersmom- I would DEFINATLEY get a new uro and keep looking for drs that will help. I just found one, and although he is just a GP he is really good about testing etc. I would also make a point in looking in to pundental nerve damage and pelvic floor therapy. It sounds like you have more going on than just IC, thats just my opinion..

            Jenn
            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!

            Comment

            • #7
              Oh...that's just crappy (pardon the poor word choice)! First, I am really thinking about you right now... I agree with Jinny Jean that you are not seeing the right person. I have only been on the site for a few weeks, but it looks to me like you could access Jill or Donna. Let them know where you live and maybe they have some recommendations about where to go next. You should NOT have to live like that! I am finding that this is a long series of investigations where we have to eliminate all that is NOT the problem and, at the same time, figure out what IS the problem. While I had hoped for a quick fix, I don't think it will be that way for me. I am a teacher and not working right now, so I am more free to focus on relaxing, eating properly, and reading about IC. My fear is that school will start and I will go right back to poor habits like peeing 1x a day and drinking no water until 6 at night. You hang in there and keep looking for the right doctor/doctors. Let's chat again.

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              • #8
                Jinny Jean, you are one smart girl for one so young!

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