Interstitial Cystitis

[Monnette]

I recently was dx with IC and also Autonomic Nervous System Dysfunction.  I really am not too worried about the autonomic thing as that just seems to not get much worse.  However. the IC has made me miserable.  My meds prescrived for it should be here today and I cannot wait.  I was told to get the book Interstitial Cystitis Survival Guild by Dr. Robert Moldwin.  I really am afraid to eat or drink anything other than water.  I was told a while back to eat Gluten Free because of my many autoimmune illnesses but have yet to put that into full practice.  Has anyone out there with IC found what bothers them the most in foods and drink?  I was making fruit smoothies in the a.m. but it sounds like I will have to give them up...anything with acid in it is a no no I understand.   I really am finding it difficult to find anything to eat these days.  Can't live on water so have to eat something.  I have been in TERRIBLE pain thes past two days since they did the bladder test with the potassium.  Does this pain get less after a few more days?   I just  have never been in so much pain from one thing.   Would love to hear from other IC patients that could give advice.

[SaraMonson]

Hi, I read your post and wanted to respond as one IC patient to another. I am sorry that you are having so much pain and problems. I completely understand. I was diagnosed seven years ago, but had symptoms dating back 15 years. The symptoms started in the early 1990's but it took almost a decade for the pain to set in, but when it did, it was unbelievable. I didn't have the potassium test but have heard it causes alot of pain. Did you have a cystoscopy? If you eat potassium rich foods, you will have alot of pain. Initially, I had to give up all juices, fruit, milk (lactic acid), sodas, etc. There is an IC diet guide online that you can follow. I suggest you get a referral to a pain clinic and try to get the pain and symptoms under control. Also, take care of your general health and get help for depression, if and when it sets in. You can control what you eat, but sometimes it doesn't matter if I even eat at all, it still burns, cramps and hurts.  I also had physical therapy for pelvic floor dysfunction and it helped some. Although I have been able to somewhat reduce the pain, I still deal with ic everday.  Hang in there, I send good wishes and will pray for you too. P.S. You can call the Interstitial Cystitis Assoc. to get the names of physicians in your area that treat IC and find out about joining a support group.