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How important is the water you drink? Would it really help if I started drinking Evian exclusively? I noticed that WalMart sells Evian in big 5 gallon jugs that have pour taps on them.
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Lee Ann
Current Rx Meds:
Atarax, Ditropan, Elmiron
Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
Hooray for babies!
Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
Didn't work for me:
Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
IC (Mod-Severe) since 1996
UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).
My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...
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Leeann,
I find that I can only drink Evian or Aquifina they both have nothing in them other waters and tap waters make me have burning and fequency..
RondaHugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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Before we got our filtered fridge I used to use a PUR filter and had no problems with the water. I also have the gallon jug with a pur filter. It's a whole lot cheaper, especially if you're thinking about buying the kind with the pour spout. It might cost more initially, but you get a lot of use out of those filters. Just a thought.
*IC-- Summer 2004; PFD--October 2005
*Fibro--Fall 2000; CFS-- Fall 2000
*MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis
Total Abdominal Hysterectomy--adenomyosis--9\08
04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.Comment
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I drink the filtered water out of my fridge door when I'm at home. I get some no name water at the discount grocery store that I go to, I check the name and there's nothing in there but water and I don't have any problems with it.Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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I drink Distilled water, my nutritionist recommended it, said nothing is in it.
Kari Kari 
I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!Comment
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LeeAnn, honestly, I don't notice a difference between Evian and my Pur water filter cleaning my tap water. I have the one that is the most "advanced" with the best filter and I drink that and Evian. I'll go a few days drinking one, and then switch to the other and notice no difference. I'd say try the Evian for a week and if you see a difference, do it! Maybe try the Pur water filter too. It is more cost effective as well![SIZE="1"][B]Be well, Alyssa :hi:[/B]
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I am also thinking about buying a distiller to distill my water. I heard this is the purest way to have water. I now only drink evian, but it is getting real expensive.
JenComment
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I drink our well water from the tap, but when we are away from home I do drink bottled spring water. I read the labels and just make sure it says spring water and no additives.
DonnaStay 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 foolComment
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I drink Arrowhead, Aquafina, Crystal Geyser fine.
Dasani, Evian, & waters enhanced with minerals do bother me.Kadi
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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.
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New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
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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!
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You know, I thought that evian was pure as well, but I guess it is not because Kadi is correct, it does contain minerals and stuff. I just looked at my bottle. It contains sulfates, nitrates,biocrabinates,calcium, magnesium, and silica.
JenComment
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I'm sure if you search "Evian" on here that you'll find many posts that both praise it, blame it, and are indifferent to it!
Personally, I think Evian was AWESOME when I was diet sensitive.... I also used Fiji water which I personally think, is even better than Evian... but both to me, are better than the other spring waters... Try it for at least 2wks and see if you feel better.... if you do, then great... and if you don't then you're not worse off than where you started!current meds:
cytotec 200mcg twice daily
toprol
allegra
ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible
dx: hashimoto's thyroiditis 1998
dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
dx: endometriosis 2003
dx: innapropriate sinus tacchicardia 2005
meds tried but failed:
elavil (6months)- severe tachycardia
elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
a bunch of others
Me and my best friend's baby (also my Godson!)Comment
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water
i've never met a water...that i didn't likeQuit ELMIRON due to hair loss
Cystoprotek ROCKS!
find me on FACEBOOK -
search my email [email protected]
Current Meds:
AM Cystoprotek & ATARAX 50mg
Dinner CYSTOPROTEK
PM Elavil 25mg
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What water I drink makes a huge difference. ( I can't have milk, so water is all I do drink, period). I cannot tolerate Evian or any others with lots of minerals or added minerals (such as Dasani). We get our water from a spring at home; I can drink that and other spring water without added minerals.Comment
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