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  • Still flaring and very very sad.

    I just read thorugh all the posts in the flaring section... Seems like I am still flaring from the antibiotics... I stopped them on Thursday and Im still in pain... I am so sad, and down and feel like a waste of skin. Does this really get better! Right now it feels like it never will I have tryed everything today! (although I made the mistake of using monistat which made it worse) I have tried hot baths, tums, tried to go to the ER to get a catheter but it was super busy, eating just plain pears, drinking tons of water, nothing is working! HOW AM I SUPPOSED TO LIVE WITH IC !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!! Please tell me because I am so desperate for some hope.
    Last edited by ICNDonna; 06-19-2011, 02:57 PM.
    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!


  • #2
    I totally understand how frustrating IC can be. I hope your tomorrow is better.

    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

    Comment


    • #3
      Just sending a hug & praying you will have relief soon.
      Kadi

      -------------------------------------------------------------
      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!

      Comment


      • #4
        ive found that drinking alot of water or vanilla ice cream/milkshake soothes me. i am still in pain also
        Newly IC diagnosed as of February 2011.

        Medications I'm on that seem to work:
        Zoloft- one once a day
        Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

        Failed Meds:
        Elmiron-after 4 months,digestive side effects got to be too much
        tramadol-allergic
        DMSO treatments(5-6)
        probiotics

        THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
        AROMATHERAPY-candles,incense
        Village Naturals Aches and Pains Peppermint Bath Salts
        Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

        ACUPUNCTURE/HERBS
        Significant pain relief so far.

        MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
        ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

        Add me on facebook Angela Hasic

        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
        Lord, make me an instrument of your peace;
        where there is hatred, let me sow love;
        when there is injury, pardon;
        where there is doubt, faith;
        where there is despair, hope;
        where there is darkness, light;
        and where there is sadness, joy.
        Grant that I may not so much seek
        to be consoled as to console;
        to be understood, as to understand,
        to be loved as to love;
        for it is in giving that we receive,
        it is in pardoning that we are pardoned,
        and it is in dying [to ourselves] that we are born to eternal life.

        Comment


        • #5
          What about DMSO or Rescue treatments?
          <center>
          <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
          </center>

          Comment


          • #6
            Im not aure about the states,,,,, but here in Canada, we have to wait a loing time to see a uro.. so rescue treatments pretty much dont exist here
            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
              Dear jenny jean are you close enough to new york for treatments it might be worth your while?
              <center>
              <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
              </center>

              Comment


              • #8
                I am trying to get in with a pain clinic here in Oklahoma, and it is such a process. I understand that they are trying to keep pain meds out of the wrong hands, but I hate that it takes so long to get meds to people who need them. I hate this disease, which is my mantra right now. I hope that you get better results, and I hope you feel much better soon. This is my hope for all of us.

                Comment


                • #9
                  It really does get better, I promise you. There are many of us who live normal lives, work, raise kids and even have fun sometimes! I was like for at least the first 3-6 months before any treatments started working. Now, that it's been almost 2 years, I'm pretty much fine ALL THE TIME. I seldom have a flare up and when I do, it's VERY short. I think the worst has been for a day. Usually a flare is for a couple hours due to something I ate that I didn't know would flare me. Have hope and think positively. We're all here for you!
                  Your Friend,
                  Michelle

                  Diagnosed: 10/16/09

                  Elmiron, 100mg 2x per day
                  Imipramine, 10 mg per day
                  Diazepam 10 mg for sleep
                  Zyrtec
                  Zovia, birth control (ongoing-no periods)
                  Probiotics
                  Hydrocodone, 2 pills a day (at any time of day)

                  Comment


                  • #10
                    Sending hugs your way....hope you feel better soon.

                    Comment


                    • #11
                      Thank you Ussually I do have hope! I guess when you are in the middle of pain you lose all hope Anyways I am feeling a little better now. My mom came in my room this morning, and what she said hurt my feelings, but she IS right.. I have been grasping at straws and doing EVERYTHING in my power to try and find something that works. I have used my body and bladder as an experiment and I am VERY stubborn. I have tried every suppliment I have come across, I have changed three different diets... blah and im tired. She said stop! slow down and do one thing at a time--- when I think back to a little while ago, I stuck strictly to JUST the diet and was on elmiron, stopped ALL the suppliments ----I had one month of feeling really good!

                      I think that was because I was doing things very simply. Im trying to be patient with my body but I hate it right now and its hard to even allow my bladder to live in my body! I feel like if it cant behave then it needs to get out. lol

                      Lots of the time I feel really helpless, how can this just come on so suddenly!!!!!!!!!!!!!!??? I was fine before this and I feel like it has stolen my life. (well ok this is not entielry true) because by nature I am an optomistic person for sure... but it just gets hard to stay in control. 123456- I really hope your right, and im so glad you are doing well. I try and think, wow there are alot of people who USED to be on here, where did they all go? well, they probably figured out what worked for them, and are simply living normally because they dont need any support.... this is what i like to think. whether or not its true im not sure.

                      Well at least I know that it was the antibiotic that were flaring me BIG TIME...guess no more of them!// I have a few triggers pointed out now: Cranberry anything (obviously) lol pop, ANTIBIOTICS.. MSM/gluclosamine thats about it right now. ( I just assume that cocolate, tomatoes, anything spicy also gives me a reaction and I steer clear) haha.

                      Thanks everyone for your kind words, I hope that I start feeling better and can turn it around and help others! When you see me giving hope to others- I feel good lol... isnt that how it goes!? lol

                      I was also thinking about this on a side note. I am officially a social worker as I got my degree last week, and I actully had an epiphany the other day... I think maby I am meant to work with people who suffer from chronic illness and disease. I think by me having this I am able to relate to these people on an incredible level....not just someone who has sympathy, but who actually has a feeling of what they are going through...I hope to get well enough that I can inspire others with chronic illness that there is hope

                      Funny how life leads you down such different paths....

                      Thanks again

                      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


                      • #12
                        PS 123456 I just sent you a PM. Not sure if I know how to work the private messege thing haha but it should be there

                        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


                        • #13
                          rescue instillations

                          Hello there...

                          I live in Canada... I just wanted you to know this option.
                          I have never had any of my instillations done by my uro. I am 14 hours drive from there. My general practitioner does it. And I did get a nurse do it once too!

                          Just thought I would put it out there.

                          Blessings,
                          Wizbe

                          Current Meds:
                          1 Elmiron 100mg 3x a day
                          1 Cimetidine 300mg 2x a day
                          4 Gabapentin 300mg 3x a day (3600mg)
                          1 - 2 Atarax 25mg at bedtime
                          1 baclofen 10mg 3x a day as needed
                          200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
                          2 belladonna and opium suppositories as needed for pain daily.
                          Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

                          I have tried but failed -
                          lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
                          [/I]

                          Comment


                          • #14
                            Thank you! I wasnt aware that we had that option. I will to ask my dr about it. I think he will tell me no though. No one seems to know anything in my town unfortunatley and id have to go to the ER for any real help because my dr. takes two weeks to get in too.... I might try the walk in in the next town though, maby they would have some advise...

                            Thanks again

                            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

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