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I know for me coffee is TERRIBLE. Tea is bad and Tylenol is also bad. I haven't noticed anything else that is a major problem yet... but I'm afraid to add things back considering I still don't feel well.
Pepperidge farm cookies, queso from El Chico's, I believe Folic Acid (not for sure if it was that or the queso), soft pretzels. I'm sure I will think of more. I am a chicken and have not branched out very much as you can tell!
Diagnosed with IC - March 2007
Diagnosed with vulvodynia - June 2007
-Lots of prayer
-Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
-Taking Prelief as needed (stopped because of pregnancy)
-IC diet
Tomatoes. (Which I guess is really a fruit b/c it has seeds).
Coffee and Tea.
Yogurt.
Foods that bother my IC set off a specific type of pain---burning. If I start burning it is almost always b/c I ate something I shouldn't have. Which is always an accident b/c I never purposefully eat something that will make me hurt.
What about other people? Does food set off a specific type of pain such as burning? Or does a food just increase frequency? How does a bad food effect you?
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...
Sodas of any kind.
Garlic (most ICers are fine with garlic, but it does bother me)
Tomato, even a tiny bit
Oranges --- all citrus fruit
Tea
Regular coffee (I can have one cup of low acid)
Mustard
There are others, but I think these are the worst.
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.
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
Lately I feel like everything I put in my mouth is a trigger!! LOL...but if I had to just name a few, I would say, Any beverages other then "ok" water, Vinegar, Fruits, tomato's, mostly any foods with preservatives or acid in them. Those are probably my worst.
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!
I can drink a little bit of iced tea or have some pizza and be okay. A couple of weeks ago I drank some white iced tea that had green tea in it and I didn't know because I didn't read the label Ouch! Green tea really is evil. Ibuprofen really affected me once. As long as I don't over do it I'm okay, I can eat some chocolate and be fine but the one night I had chocolate cake with peanut butter icing and that killed my bladder. LeeAnn for me I get more pain, not a different pain but I usually get pain with a food flare, sometimes frequency too.
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
The only things that ALWAYS trigger me are vitamins, coffee and alcohol. Some days I can eat a bowl of chili at Wendy's or have a glass of orange juice without a problem. Other days my bladder will kill even if all I have eaten is oatmeal or plain pasta. The diet thing really makes me nuts. I actually drink gallons of chocolate milk (for all those pills that you have to take with food or milk) I guess it should cause problems, but some days I am fine with it. I try to figure out what my triggers are, but it seems to depend more on the day or the time of the month than what I actually put in my mouth.
I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.
DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.
I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.
It's weird, but with all the talk about diet and IC, I can't really say I've noticed anything in my diet that makes it worse or better. I eat whatever I want, and my bladder is always pretty much the same (bad). I did a little experiment one month to see if sodas made it worse or better. I do like soda, but one month I cut out all soft drinks and didn't notice a bit of difference. NONE. As a matter of fact, one month I drank a ton of soda and felt somewhat better that particular month. Another time, I drank very little and had a horrible flare up. It seemed to have no relationship at all. The month I drank all the soda, my PMS seemed better too. But the next month I drank a lot of soda. and the PMS was bad again. I think with me there's a lot of hormonal stuff going on that is happening unrelated to what I'm eating or drinking. I wish I could make a connection between diet and IC because I'd follow any kind of diet out there if it would make me feel better. But I don't think that's the case with me. However, I have no doubt that some people react very strongly to things like tea, chocolate, spicey food, etc.
I can eat the hottest Mexican food in the world and feel no worse or better or anything, just the same. So, at this point, I see no reason to put myself on a restrictive diet when I see no correlation. I certainly would if I thought it would help.
Great question -
- Green tea is AGONIZING
- Chocolate gives me bend over and SCREAMER cramps
- Multivitamins of any type
- Black Beans
- Hot, spicy food
There's more but that's what comes to mind right now!
Jill
Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/
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Multi-Vitamins
Anything orange..orange juice, orange gatorade, cheez it crackers
Real juice (i can drink gatorade as long as its not orange)
Advil
The following I can have as long as I dont over do it:
beer
chocolate
wine
Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.
I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!
Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.
I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!
My always never fail triggers:
soy milk
vinegar or anything with vinegar in it
cereal with preservatives (BHT?? I think it's called)
sodas
tea
most fruits (can sometimes, if I'm really good and hold my head just so, eat blueberries
spicy food
Doritos
Everything else is maybe can eat sometimes, maybe not......it's weird!
And to whoever asked, yes eating something gives me a definetly different pain; a burning pain as opposed to the other, everyday pain. I never eat anything I know will hurt me; but sometimes you just screw up!!
I loved Jamba Juice.
Kari 
Ouch! Green tea really is evil. Ibuprofen really affected me once. As long as I don't over do it I'm okay, I can eat some chocolate and be fine but the one night I had chocolate cake with peanut butter icing and that killed my bladder. LeeAnn for me I get more pain, not a different pain but I usually get pain with a food flare, sometimes frequency too.
I actually drink gallons of chocolate milk (for all those pills that you have to take with food or milk) I guess it should cause problems, but some days I am fine with it. I try to figure out what my triggers are, but it seems to depend more on the day or the time of the month than what I actually put in my mouth.
The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.
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