Once Treated/Ignore Diet?

[futurehope]

For people who have had IC for a while and have medications that they take, such as Atarax, Elavil, Elmiron and have noticed improvement, do you then "cheat"? Do you eat items on the problems list?

I want to know if your diet can be more varied once your bladder heals, or does cheating lead you back to "square one"?

Thank you.

[Imustpee]

You can try adding one food at a time and seeing how your bladder reacts to it...if there is no problem you could enjoy that food in moderation, but if you were to flare, than I wouldn't try that food again.

[SharonA]

The answer to this question, like most questions about IC, varies from person to person. There are some who have a lot to a moderate amount of trigger foods/drinks. Then there are some who have just a few. I happen to be one who has only a few. Sorry to say that what triggers each of us is only discovered through experimentation.

I am on Elavil which helps control the bladder pain that I had when I was first diagnosed. I have problems with citrus. I have not been able to add citrus foods or drinks back into my diet except in very small quantities every so often. When I say small, I do mean small. I can have a section or two of an orange or a sip or two of orange juice or lemonade. Anymore than that spells trouble for me.

I also have problems with caffeine. I can have one cup of regular coffee in the mornings if I take a Prelief before I drink it. I cannot tolerate more than that one cup. If I try to add to that, I flare. I can drink all the decaf coffee or tea that I want.

I have also noticed that if I do flare, my flares do not last as long nor are as painful as they were before Elavil. So, for me...no, I do not go back to "square one". I have also learned that there is not an orange grown that is worth risking a flare. :shake:

:) :) :)

[ICNDonna]

Once you feel better on the diet, you may be able to add back some of your favorite foods (I would avoid citrus, sodas, and tomatoes), one at a time. Even though I have had diagnosed IC for almost 32 years now, I still avoid my personal trigger foods.

Donna

[meme]

There's a lot of foods that I think I'll never eat again. Been doing better so its getting harder not to eat some of the bad foods, but really I don't even crave them anymore. Taking a cruise though first of the year and they have a midnight all chocolate buffett, which means trouble for me! Hubby and I decided that we won't eat any until the last night then we'll gorge ourselves and plan on staying home for at least a week cause it'll cause a flare. It'll be worth it, but after that its no more chocolate for me!

[dmarie]

I have just completed a series of 9 weekly bladder treatments (heparin and lidocaine). I am feeling soooo much better. My doctor said that the heparin is like a band-aid. It coats the bladder so that the bladder can begin to heal. She told me that eventually, the bladder becomes damaged again and so continues the vicious cycle of ic. However, she led me to believe that an ic bladder is capable of healing (even if it is temporarily). ????????????

Dawn

[Always L8]

My doctor told me that my bladder would be totally healed within a year with me being on Elmiron. I have heard from everyone else that it is not cureable. I have been on Elmiron for almost 3 months now. I am just waiting to see what happens. I am going to keep an open mind, so that I am not totally depressed if it does not heal, but I will be thrilled if it is. A lady at my church had IC for 20 years. She took Elmiron for a while and she never has anymore problems with her bladder. That gives me hope, although I hear more bad reports than good.

[vm]

I have been able to eat any and all foods and drink whatever I'd like for about 3 1/2, 4 years now, I think? I am on several meds and they have left me virtually pain free AND I have no restrictions on my diet. I waited until my symptoms were much better before adding in my trigger foods and I did them one at a time. It took much longer for me to be able to tolerate tomato, but it did happen and I've been eating it for a few years now in any amount.

[Lisa_S]

I have been feeling better for the past month or so (maybe the Elmiron finally kicking in?). Previously I had to stay away from all kinds of foods. Now I can eat small amounts of things I wouldn't have touched before. I still stay away from the big things (most fruits, tea, vinegar, etc). I'm hoping that I will continue to improve and be able to add more foods back in.

[icnmgrjill]

Folks... let me clarify a few things.

#1 - An IC Bladder can heal.. over time... and with therapy. The wounds on the bladder lining can and do improve and, for some, go away entirely.

The "wounds" aren't the IC. IC patients are slow healers... (aka the APF factor).. thus we're fine until our bladder is wounded but once it is... we're very slow healers.

So, can wounds heal? Certainly. But what we haven't figured out yet is how to "cure" IC.. which means repair our healing mechanism. We don't yet know how to turn "off" that APF factor that Susan Keay found which is inhibiting healing.

So, are wounds healable, yes! But is IC curable?? Not yet, but they are getting closer each day. Once that APF can be turned off, we'll have that cure.

Last thought... thus, even if you're feeling better, your #1 goal has to be to protect your bladder. So, while you can cheat on certain foods, I think any IC patient that starts drinking massive amounts of coffees and sodas each day is just foolish. Those beverages alone will slowly eat away at the bladder lining and, whammo, you'll have wounds again and, whammo, it will take a long time for them to heal.

Jill

[Lisa_S]

Thank you Jill, that was a very good explanation. Makes sense to me.

[mela414]

I haven't been able to add anything in yet. If I eat anything that I shouldn't I am in pain. But, then again....I haven't yet found a medication that I can tolerate that will help my bladder to heal.
It's sucha viscious cycle.

[miz_sunshine87]

The entire time that my IC was in remission I ate and drank anything that I wanted to. The only things that ever made me pee a lot were coffee and beer, but I suppose they do that to a lot of people. That lasted over three years, but now I am back to square one.

If you still have symptoms (even if they are mild), don't go hog-wild, but slowly add things back into your diet in moderation. I was lucky that my IC literally went from bad to gone within a few months of treatment. If this happens to you, I would say congratulations, and enjoy eating whatever you please.