Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
So I was given about seven pages of things that I shouldn't eat in order to help my IC and it's really got me down. I feel like I can't eat anything or do anything. Did your doctors recommend skipping lots of foods?
I looks bad I know. I was just diagnosed a little over a month ago and finally got a month into the diet. Go to the IC-Network page and there is an elimination diet there that tells you what should be safe, what you could try, what is not recommended, and what it calming for others. I eat oatmeal to calm down my bladder instantly and can eat most of what is on the safe list except for watermelon. The trick is to eliminate all you can to both facilitate healing and to find out what was your trigger. Mine is chocolate, MAJORLY!
The caffeine and soda withdrawals for me were WICKED. But it was only about a week and then I was ok. You can get Prelief (Walgrees has it by the Tums area) and take two with something you know will irritate you or you just cannot make something else because you are out or something. It is really expensive through the IC-Network so I recommend Walgrees (under $15 vs. over $30).
It would be better to just look at what you CAN eat vs what you cannot. It does take a lot of discipline but the rewards are priceless!!
I have done a lot of research since my diagnosis (partly as I was in too much pain to do anything else) and apparently diet changes can help about 90% of people with IC. I just found the right medication changes (Elmiron three times a day, an antihistamine to block stem cells, not over the counter ones), vaginal valium, and Ambien to sleep). For some reason the antihistamine has the opposite affect for me and most people take it at night for drowsiness. Plus I get rescue treatments put into my bladder once or twice a week.
Again.. it looks like you cannot have anything. And in reality you will find that cutting out all processed food, soy, and acidic foods will make you feel better and you will eat healthier!!
Hope that helps!
Mary
I did a lot of other treatments, but honestly diet was and still is key for me. My triggers are Alcohol, caffeine, citric things like Orange Juice, well most juice actually, onions are killer too.
You will learn what your triggers are and eventually you can introduce some of them back one at a time and build up a tolerance, but some things I have just given up all together and it is well worth it. I honestly forget I have IC until tonight, Thanksgiving when I ate things I don't normally eat and I decided to check out some groups. I forget how awful and scary it was and all the little tricks I have learned over the years.
It does get better and eventually you hopefully won't even remember you have it, you will just remember you can't have certain things or will pay for it later. I hope some of this helps. If you or anyone ever has any questions they can ask me anything.
I hope I can help.