Go to www.ICnetwork. com they have a diet there, I can eat most things in the ok section, but it is a trial and error thing. For me I can only drink bottle or jug water, or milk only, I can only eat fresh meat no canned or processed, fresh veggies or frozen, no canned, nothing with artifical favorings, or citric acid {try finding something without those two things} The only seasonings I can have are fresh garlic and no iodine salt. I can have eggs and some types of bacon which doesnt make sence to me as bacon is processed. I do, do stess relief exercises and pelvic floor exercises. This condition is a pain in the butt {no pun intended} I also take elmiron and amitriplyline. Please look up the website and connect with people on here they are a very nice group and very helpful LauraK

Thank you.. even knowing which diet sheet other ICers follow that helps them is helpful since there are so many out there. I appreciate the advice. My obgyn is sending me to a physiotherapist for my vaginismis so hopefully that will help with the pain too.

Hi Kat, Sorry your feeling like that. I feel your pain. My hair is coming out in clunks. I think Its the elmiron. My hair wasn't fallin out before the meds... So now I have to back to her and let her give me something. just go to the site that maryh1950. You will be giving a list of what to eat and what not to eat. I hope you feel better, I'll come back to see how you doin.

Thank you hun

Four months ago I finally got diagnosed with IC after battling it for 25 yrs...the chronic pain, urgency, & inability to empty my bladder completely. I was hesitate to take the Elmiron so I decided to go the natural route and try aloe vera leaf capsules. After 6 weeks on this product, I saw a big improvement, and after 3 months I felt pretty darn close to normal. My gyn was so amazed at my improvement just after 6wks that she told me to continue on the aloe and to not take the Elmiron. Plus, she was going to recommend it to her other IC patients.

I take the product called "I.C. Aloe Vera" capsules (700mg) by the company Healthy Life Harvest at www.healthylifeharvest.com. The reason this product works so well and lots faster than the Elmiron is because 100% of it is absorbed as opposed to the 3% of Elmiron. Also, the chemical make-up of the aloe is the same as the Elmiron, except with a natural product & no side effects, and it repairs the lining and keeps it coated from there on out.

For the first 3 months, I took 2 capsules 3 times a day. At month 4 I cut back to 2 capsules 2 times a day. In a month I plan on taking only what the bottle directions recommend which is 1 capsule 3 times a day. Along with taking the aloe capsules, I followed the IC diet strictly for 3 months before putting foods/drinks back into my diet. Amazingly I'm able to eat & drink anything I want...even coffee & chocolate! I do take 2 Prelief tablets with my coffee just in case to neutralize the acid.

Everyone is different, and this treatment may not work for you but I wanted you to know about this option. And...I had the worse case of IC my doc had seen her 25 yrs of practice so I was very happy this product worked for me!

Hello, Kat

All these suggestions are great, and as someone mentioned, everyone is different, so what works for one may not work for another, so you will have to experiment with it all to find what works best for you. Diet is definitely a big factor! I got to the point; however, that it seemed there was almost nothing I could eat without having a flare up. I tried aloe vera and different berry drinks and different herbs all suggested by my friends and nutritionists after I got desperate when the drugs seemed to stop working for me, not to mention all the side effects. I believe in both, because you will have emergencies where drugs are absolutely necessary, but when they don't work, what do you do? I have Lupus and the IC became unbearable. I thought we were not permitted to mentioned specific brand name companies on this site, but seeing that there are some posted, I must have misunderstood. So I will tell you that a friend gave me a product that was targeted for inflammation, and that did it for me! The product is called "Arthaffect," and you can get it by contacting the company Reliv, International. It is a patented product with quite a number of different anti-inflammatory herbs, not just a few. I no longer have the fear of not being able to go on vacation and having a terribly miserable flare up. My best to you!

MJHobbs' reply reminded me...that if you try the aloe capsules, that you must purchase only the ones from the site I mentioned above. The ones you find in health food stores put ingredients in with the aloe that bother your bladder lining, therefore contradicting what the aloe is supposed to be doing. The only aloe product on the market that has only aloe vera leaf (no gel or liquid or any other added ingredients) in its capsules and is designed specifically for IC is the product from the online Healthy Life Harvest store. Lots of ICers make the mistake of thinking any aloe product (capsule, liquid, or gel) will work but that isn't the case.

Thanks MJHobbs for mentioning what worked for you. We ICers need all the help we can get! And...YES, the IC diet is a must while you are trying to repair your bladder lining. Slowly put foods & drinks back into your diet one at a time no sooner than 3 months on the diet. Then whatever bothers your bladder at that point...avoid it big time! To me there is no food or beverage worth the pain.

Best of luck to all of you trying to get your IC under control~*

I also follow the diet on the IcNetwork and drink only Evian Water which helps a lot....

I would suggest taking off another semester as it takes a while for you to really figure out what foods work for you and what foods don't since everyone's body is totally different....

I've done tons of IC treatments so if you want to talk to me about them you can get me on
MSN laramarie@gmail.com or
YAHOO MrsLaraMarie@yahoo.coom or
AIM LaraMarie123

Hi Kathleen, Welcome to the group. There are some wonderful people on here and you will find great support.

You got lots of good tips and I just wanted to add a couple of things. There's also a product called CystoProtek that you can order online at www.ic-network.com. For international inquiries and orders, please contact Algonot (www.algonot.com) at 941-346-5304.

The other thing I wanted to mention and I know alot of you have heard me say this a gazillion times.....when you go pee, don't push the pee out. Even if the stream is slow and you are in a hurry, don't push! This is so important because pushing can make your symptoms so much worse.

I agree with considering postponing a semester of school unless you have your symptoms under control.
Best of luck to you. Keep us posted on your progress.
And again, Welcome!
jae

well I had to leave off anything wit acid, chocolate and fish, this seem to help, but it does not stop the flare ups. I always know when one is about to take place. I start with the back pains then the inner legs pains. I am never without pain in the private areas. It seem to help if I continue to do exercise. I take the elmiron, like you said it is so expensive that I can not keep it, I am also on the urised. I am on a low carb-high protein diet, you really just have to record what you eat and notice if you have a flare from it. Stay away from stress for this brings on flare up.

Thank you everyone for your replies so far... last night I ate some blueberries (which other ICers on this site eat and which I ate before with no problems) and had a horrible flare. I tried baking soda and water to neutralize it and although it didn't take away the pain completely, it really did help which is amazing. However, today I'm retaining a lot of water from the sodium and I'm so bloated I look fat lol. Booo!! This is really a horrible thing ugh. I'm going to invest in a water filter instead of getting bottled water because it's better for the environment, but thank you for the tip.. I didn't even consider that it might be water bothering me. I seem to be okay with milk, cottage cheese, plain pasta, and oatmeal so far. Obviously this isn't enough for a complete diet lol... I hope some other foods can be added onto the list soon. It really sucks that we can't eat deli slices because of all the preservatives they pack into them.. that would save me a lot of time. If any of you have some foods that you eat all of the time that don't bother you at all, could you please let me know what they are? Thank you... this has already been very helpful :) xoxo

Try the OTC Prelief tabs instead of the baking soda so you won't bloat up.

Wow, blueberries bothered you? Before I was able to put foods back into my diet, I lived off of salads (lettuce w/ english peas added to it) and used cottage cheese w/ some olive oil w/ salt & pepper for a salad dressing. Blueberries and gala apples were the only fruits I could eat.

As for processed meats which I didn't eat, I'd cook my own chicken or pork meals so I'd have leftovers that I could add to my salads or make a sandwich with. A light layer of mayo on my sandwich didn't bother me. Another thing I did was google online tomato-free meals where I found pasta dishes recipes that didn't use tomatoes and ate them.

For a coffee & herbal tea substitute, I drank a tea recommended for IC called Pero and put a small amount of organic 1% milk in it. I drank this to replace my coffee and herbal teas. Besides that, I only drank filtered water.

Oh, have you tried eggs? Eggs didn't bother me so I cooked eggs a lot. Also I ate potato chips by Cape Cod (only potato & salt for ingredients) and multi grain crackers with a thin layer of cream cheese on top. I'm drawing a blank as to what else I did. I just know I ate a lot of salads!

Hello Kat Welcome to our group you really need to try a bladder cocktail treatments I give them to myself I have a severe case of IC and ENDO too and this really works you can eat everything that you normally ate before if you want to cut out the foods we are not supposed to take thats great but with this it is awesome you get weeks of relief from just one treatment. I use Lodocaine, Rimso, Sodium Bicarb, Heparrin, Gentamicine, and Solu- Cortef and I mix that all together and give myself a cathater at home for my treatment its really works girl.

Michelle

I fear the road ahead for you is not well. I think you should open your options outside the normal uros or you will continue to get sick.
For now you should check out the low oxilate diet yes that will help your burning. this link will help you with that http://www.branwen.com/rowan/oxalate.htm
http://underlivetssmerte.wordpress.com/2008/08/26/vulvodynia-oxalates-and-diet/
http://findarticles.com/p/articles/mi_m0FDN/is_4_8/ai_111303984?tag=content;col1

Make sure you check these links this is my dr she has helped so many like you and you should start on the diet at least.check out these links
http://www.icaroadtorecovery.com/
http://www.icama.org/people-behind-icama
there is a phone in support group every month we just had this one but you could come to the next one via phone. Dr Brizman answers questions from people about treatment.
I hope you give it a chance
Be well
Nicole