The KInd Life Community Forum

I don't have any advice, but I just wanted to add some support for you. I have IC too, and I know it can be very frustrating. Are you taking Elmiron? My condition has improved immensely since I started taking it. I have very few flare-ups now as long as I take my meds and stay away from my food triggers--tomatoes and colas (caramel coloring). Hang in there!

Hey! I have IC too!

I was diagnosed in 2009, but I have had it since 2007. Took a long time to get diagnosed. Here is what I have learned:

1. The IC elimination diet will be a good start but don't follow everything on there to a "T". Everyone is different. For example, my friend with IC can't have any chocolate while I can eat a ton without any problem. Then with tomatoes... exact opposite. I can't have them, she can.

2. The Interstitial Cystitis Association on facebook or on their regular web forum is a great place to meet others with IC who can help you find what will work best for you. There are thousands of us, many vegetarian and vegan too.

3. Do not take multivitamins because it will irritate your bladder big time. Eat veggies to get things like vitamin C and B5. (good call powerlifer, don't know how you knew that without having it!)

4. My personal experience with the diet list: I was told not to have tomato, kale, any fruit other than blueberry, watermelon and pears, no miso etc...That dairy and meat were ok... My outcome?? Well, I followed the diet and found that if I had most of the "OK" things, I would still flare if they had preservatives or were not fresh. I also found that dairy and meat made my flares worse.

Oh and as far as the soy irritation, some have said it is because the soy they had was processed or low quality... but then again some women still flare from it.

Do you have a facebook? My friend BreAnn has the very same thing and she has a small group of other women who share that same issue with their IC. I could get you her info if you have a facebook, let me know :) BreAnn says she drinks coconut milk, almond milk, and rice milk instead of soy products.

Oh, and Ronda, how long have you been on Elmiron for? Almost everyone I have spoken to haven't been helped by it long term, and someone at the ICA was actually talking about how it isn't recreating the lining like it says it will. I am curious to know what worked for you?The combo I had been on: elmiron, elavil, pyridium, allegra, toviaz, detrol, bladder cocktail instillations (huge No-NO!), lidocaine, vicodin, and I forget the other one...

Honestly the only thing that has worked for me thus far is changing my diet to being natural and less acidic. And I also learned that some foods the IC diet calls acidic actually aren't because they become alkaline in the body (like lemon and lime juice). Once my body became more alkaline and less acidic, the pain eased and the flares were controllable. I think on the beginning our bodies are so acidic that until we rid our bodies of the bad acid, we flare.

Hope this helps :)

Wishing you the best!

I have IC too and was on Elmiron for about 6 months, but my digestive system just couldn't handle it. Let's just say I could never be far from a restroom and had too many close calls. It did help with the IC pain, but it just wasn't worth it. I have gone vegan since but haven't tried changing my diet to try low oxalate foods because I felt like I couldn't eat anything. I know that certain drinks, like ice tea or soda or anything with citrus cause a lot of pain. I have tried elimination diets here and there and have not noticed a change. Other than that I just deal with it. I would love to know what you figure out!