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I found a brand of Kefir that I can tolerate! It is called Nancy's, and it comes in peach, rasberry, blackberry, and strawberry. I never tried the strawberry, as I can't do strawberries, but none of the other 3 made me flare. I am very happy, I wanted to drink kefir for the last 2 years but never was able to without a flare. I get it at the natural foods store, and it is organic and no sugar added!
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30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.
My experience:
~Previously took Elmiron 100mg three times a day
(9/29/05-7/06)
~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
-I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
-20 month postpartum remission from 4/17/09 to 12/10/10.
-Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.
Also doing:
~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
~Prenatal DHA/Fish oil supplement
~Vitamin D supplement
~Culturelle probiotic -
What is Kefir??? DUH!! I have never heard of it and would like to try it. I am always wanting to try something new that IC'ers maybe can tolerate.
RobinThe happiest people don't neccessarily have the best of everything, they just make the best of everything that comes their way!!
Meds:
IC: Elmiron, Tofranil, Hydroxyzine, Prosed DS, stool softener
UC: Asacol -
I still havent gotten up to Trader Joes to get some to try.Comment
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Hi,
My name Is Susan and I live in the Los Angeles area. I was just diagnosed with I.C. last week and am struggling terribly. Right now the doctor is trying an anti-depressant and an antihistmine, but it has been of little help. Please tell me what side effects you a have experienced with Elmiron. Just reading about it was pretty scary! You are so very young to be going thru this.......please write me back!
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Kefir
Massagedoula (and others interested in kefir) have you seen this site?
it tells you everything about kefir and i have bought kefir grains from Dom and have been making my own yogurts and cheeses and highly recommend it to any of you that enjoy pottering in the kitchen
Susan
welcome!!! I am so sorry to read of your diagnosis but happy you have found us. If you have time, please read the handbook and as much as you can, you will find so much to help you cope.
If you begin your own thread, you may get more answers or perhaps (please) could the mods move this for you. I have not tried elmiron so i am sorry but i cannot help you
once again, welcome!
lisaComment
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