Interstitial Cystitis

sunnyweather · Post by **sunnyweather** » Wed Jun 11, 2008 6:24 am

Just curious if there are any IC patients out there (I've meant a couple here, just curious if anyone else was out there)- just thought it would be a nice way to talk about the symptoms and dealing with symptoms and on-and-off flares- from the perspective of anxiety. Until now, I've posted on this site due to emotions, feelings, or symptoms that were completely anxiety driven and would disappear as I calmed down and gained perspective. Now, I have the reality that even if I calm down the symptoms will be there until they run their course, however long that might be. As scary as that was the first few days after diagnosis, I'm dealing so much better now and wanted to talk to others who may not have IC, but have other chronic illnesses that they've dealt with.

Please understand this is completely new to me- before now, I thought my symptoms were truly anxiety driven (which they are to some extent) and nothing physically was wrong- now I'm transitioning to knowing and accepting that I have real lifestyle changes that need to happen so I can feel better, including medication. Just wanted others input, and if you'd rather PM than write on here, I'd love that too.

Thanks!

Guest · Post by **Guest** » Thu Sep 18, 2008 5:38 pm

I have IC. Had it for 15 years or more. I have it under control now with Elavil. But I suffered for years with it and had horrible pain. You may already know of it but there is a great website for IC support. I know the lady who started it:
<A HREF="http://www.ic-network.com" TARGET=_blank>www.ic-network.com</A>

Guest · Post by **Guest** » Fri Sep 19, 2008 3:58 am

I've had it for years and wasn't diagnosed until 2 years ago. But I also dealt w/ depression for a long time and most recently severe anxiety. It is a horrible horrible disease, at least for me. NO medications have helped. This is what caused me to have anxiety. Not that yours will be bad or untreated, there is a lot of treatment out there. I tried everything so in a month I am going to have interstim surgery. You should look that up. For me the problem is frequency, I have to go all of the time. I can say that the anxiety has made it 100x's worse, so getting the anxiety under control will help tremendously! If you can calm youself down the bladder usually follows. The only med that has helped me is xanax. Different people have different causes, but there are lots of meds to help, but the less anxious the less the symptoms. At this point my only hope is God's supernatural healing. Find a good urologist that has dealt with this and keep us posted. There is help.

Guest · Post by **Guest** » Tue Apr 28, 2009 10:59 am

Originally posted by sunnyweather:
Just curious if there are any IC patients out there (I've meant a couple here, just curious if anyone else was out there)- just thought it would be a nice way to talk about the symptoms and dealing with symptoms and on-and-off flares- from the perspective of anxiety. Until now, I've posted on this site due to emotions, feelings, or symptoms that were completely anxiety driven and would disappear as I calmed down and gained perspective. Now, I have the reality that even if I calm down the symptoms will be there until they run their course, however long that might be. As scary as that was the first few days after diagnosis, I'm dealing so much better now and wanted to talk to others who may not have IC, but have other chronic illnesses that they've dealt with.

Please understand this is completely new to me- before now, I thought my symptoms were truly anxiety driven (which they are to some extent) and nothing physically was wrong- now I'm transitioning to knowing and accepting that I have real lifestyle changes that need to happen so I can feel better, including medication. Just wanted others input, and if you'd rather PM than write on here, I'd love that too.

Thanks!

Guest · Post by **Guest** » Tue Apr 28, 2009 11:03 am

Yes you have someone that has Ic I am in pain 3 to 4 days a week I am taking Elmiron 4 times a day I would like to know what other people do about this problem as we all know it affects our sex life are everyday living. I don't know what to drink or eat I am tired of all this health food sturr that dosn't work. I don't even want to eat anymore water is so boring to drink all the time my husband seems to think I over drink on water. HELP!!!!!!

Guest · Post by **Guest** » Wed Apr 29, 2009 5:29 pm

Hi.. I have had ic for 6 years. I thank God that for the last year and half it as been in remission. No meds helped me long term, but I did take urogesic blue for the "right then" pain. The pain and urge to go were near constant for me, and when I stood for long periods of time it made the pain worse. My Dr. gave me a list of foods to stay away from or to eat moderately. Strawberries,tomatoes, onions, lima beans, caffeine, diet sodas, and monosodium glutamate (msg), were my big triggers. The msg was also a big anxiety provoker for me also. I don't know what happened to make my pain go away for the time, but I am thankful for it. I still have times when I have pain, but not like it had been. I am just able to grit my teeth and ride it out now. I know the list says to stay away from all the common food allergins, plus chocolate, nitrates, nitrites. I will look for the list and post it if I can find it. Hope you guys feel better.

Guest · Post by **Guest** » Fri Jun 05, 2009 4:47 am

My IC has been under control for the last 5 years with very infrequent minor flares. I was diagnosed with a rather mild case although I firmly believe that diet, stress management and increased water intake helps a lot to relieve the pain. After my diagnosis I changed my eating and stopped eating all foods that were high in acid...tomatoes, salad dressings, pickles, onions, acidic fruits like strawberries, kiwi, oranges....you get the picture. I stopped all alcohol and caffeine, chocolate consumption as well. I was on Elmiron for 6 months. I drank 6-10 full glasses of water a day. To make my life a little more comfortable I substituted chocolate for carob powder when baking and Pero for a coffee substitute. Both can be found in health food stores.
I also discovered a website called the www.naturalbladder.com and discovered an herbal supplement called BladderQ for IC. It is not a cure but it has a soothing effect on the tissue lining of the bladder and I found it helped with stopping the "burning" feeling I would get daily. My urologist prescribes Pyridium for bladder pain and that helps a lot when I get a flare. I suggest doing as much research on dietary changes on the internet as possible. Everyone is different and some things will really upset you and other may not. But in the beginning I would suggest being VERY disciplined about what you eat until you stabilize. Following the diet for IBS is also helpful as it is similar. The website wwww.helpforibs.com will give you delicious recipes that you can use daily and I'll bet you will feel much better in about a month. Good Luck! Janice