when you are in remission...

[peanutgallery]

What do you do when you are in remission?
I was on elmiron (stopped now) and the diet and I've been in remission for several months from mild IC. Do I continue the diet? Or do you think it's okay to stop a little (like, hey, not talking about eating oranges or anything crazy like that!) or will that re-damage my bladder?

[Linda May]

i would continue the diet and enjoy being out of pain. it sounds like everything is normal for you again and that is wonderful. i would be afraid to go off the diet if i were you. i wish you complete health the rest of your life. keep us posted:bunny:

[ICNDonna]

Usually people don't stop elmiron if it's helping. The effects from it are not permanent. I would definitely continue the diet.

Donna

[Briza]

Hi Peanut
I have been in remission for 18 months and have been able to eat whatever I want again, but I am still pretty careful not to overdo it on foods such as vinegar which was my biggest trigger-- just in case! I quit coffee again recently. I lost the taste for it when I quit smoking in January so it seems I am no longer a coffee drinker and this time I don't even miss it. :)

I have not taken any meds for my IC in the past 18 months. I've had no bladder symptoms at all except two instances of frequency during stressful situations that caused my pelvic floor to spasm but even those were shortlived, just a couple of hours.

I figure life is too short for me not to eat my favorite foods again! I just try not to overdo it ;) Good luck. Hope your remsision sticks around a long while!

[mbhbarb]

I've been in remission for 3+ years now. For me, that doesn't exclude the occasional bladder twinge, but almost all of the time I do not have chronic bladder pain, and I never have frequency and urgency anymore. I'm off all IC meds, but have remained on the diet. Once in awhile I'll add in a food to see how I do, but since I have other inflammatory medical issues, it seems to work best for me to remain strict about diet. The other thing I do is take natural anti inflammatory supplements.

I'm glad to hear you are doing well and wish you continued success.

barb

[mary124]

I haven't been really in remission in years, but the last time I was the only thing I was doing was taking Elmiron. I have never been too diet sensitive but I do watch what I eat, and if I am not familiar with the food I won't have it.

[bob04951]

This too would be an interesting survey type thing. For those who get lucky and have a remission, what do they feel it was that put them there? What was that one defining thing? Maybe this stuff can get narrowed down a bit, altho realize there is a 50 tined forked road and everyone is different.

[andreamarie]

I had very severe ic for fifteen years and then when I hit menopause things were almost normal. I did continue atarax and I needed the diazepam to keep things normal. I stayed on a low acid diet. I was given gabapentin for an unrelated problem and that helped also.

I got a severe case of shingles four yrs ago and lost my remission but it's not like it was before. Right now I'm dealing with intense vaginal itching under bladder wall.