am i in a flare?

[bunnymoomoo]

i've been trying to understand flares ... i don't know that i understand thourougly though ... i mean, here i am, doing just fine (during the summer), knowing that if i drink OJ i will have to make several trips to the potty, but luckily, low acid OJ was A-Ok for me ... then, i go back to school for my senior year (August), get completely stressed out (and constipated at that), and now my bladder is unhappy. that's when i decided to go to a urologist, who feels that i have IC. i had a cystoscopy done, and he says that everything looks normal but that doesn't mean i don't have a minor inflammation (i.e. minor case of IC). i keep having periods of horrid frequency and it drives me NUTZ! and for all i know it's not related to something i ate because i know what i can and can't eat. unless that list has changed somehow ... i mean this has been going on for a couple of months now, and i can only assume that it's a flare since for me "baseline" was before school had started and i could still drink low acid OJ; i could even drink lots and lots of coffee especially my absolute fave, frappacinos! i typically avoided teas and sodas. it jsut doesn't make sense ... i knew what to avoid, and avoided it ... now, i don't know anymore ... i just dont want to pee all the time, or feel like i have to pee all the time. i'm scared about it not being IC ... i'd been doing a lot of research on PFD and have a lot of those symptoms, minus pain. i guess that's the werid thing for me, not having pain ... i do have pain occasionally, but really, it's mostly frequency and urgency that affects me.
how long do flares even last? or maybe i'm at a point where my IC is starting to show and i will have to go on treatment, whereas before i was ok as long as i avoided citric acid ... *shakes head* i don't get it ... i'm scared that the Dr. will put me on elmiron, what if i don't need it ... i didn't before, and now my symptoms are all bad for whatever reason. :loco: i'm jsut losing my mind trying to understand it all *sobs* is it possible that i had IC where i could avoid certain foods and now it's gotten aggrivated and i have to go on some sort of treatment plan? i wish i jsut understood this disease better, it's even more difficult since it affects everyone differently, with only a few patterns of similarity. when one is on a treatment plan, such as elmiron, and let's say it's working, what does that feel like? how "normal" does one feel ... i suppose again, "normal" probably equals "baseline" and is gonna be different for everyone? ok ok, i should stop typing before i really make no sense!
thanks for listening in advance ... :bunny: bunny

[work it]

Hey bunny, I think you said it best when you said everyone is different. IC affects each of us different. I myself will have pain on occasion but is mostly frequeny.

Could it be that your body is now telling you that even the low acid OJ and coffee are no-no's? Maybe you have an infection,have you spoke to you uro or dr lately just to rule that out?
I have been on Elmiron for about 4 months and I feel so so. Some days are better then others. For your "flare" have you tried the ice pack or heating pad to help with a little comfort? Are you currently taking any pain meds? And maybe you just need to stop the coffee to see if maybe that is a little part of you not feeling good. I hope you get to feeling better, I know it's never fun having ay kind of IC pain.

[this_sucks]

Hey bunny! Are you in college or high school? Just wondering, I am having trouble with my school sitatution here :/ Oh yeah and by the way, frappachinos are my all time favorite! too bad I havent had one since the summer. Anyway, Maybe you are either stressed out or Im thinking you need to start your diet over and work your way up. Thats what im doing right now. Ive been eating chicken and potatoes and thats like it. it sucks, but i know soon maybe i can add some good stuff in that i like, like fruits and stuff. Sometimes I also use an ice pack like Teisha said. Coffee is said to be a big no-no for the ic-diet so who knows. I would see your urologist if it keeps acting up. My periods too are HORRIBLE so thats why next time im talking to my gyno about maybe skipping periods on my birthcontrol. Maybe that might help you too.

Katie*

[bunnymoomoo]

i'm in my senior year of college and actually after my condition got "aggrivated" by whaterver @_@ i haven't drank anything but water and milk. no coffee, no sodas, no more low acid OJ. that's what's so depressing, when my symptoms had first started (years agao), i avoided A LOT, and then after some time i was able to work things back into my diet quite comfortably and was SO HAPPY when low acid OJ came out cause i was able to drink that. and now (since a couple of months ago), no more ... i just don't understand what happened. it's really depressing; thinking that i'm start to feel normal, and then this. it was only recently that it got aggrivated and that's when i went to my uro who said that i'm might have IC. i think at this point he's officially diagnosed me with it by ruling other things out such as UTI, cancer, stones, etc. and it's just so weird how i'm having these bouts of frequency and discomfort. and that's why i was wondering what a "flare" is exactly, and how long it lasts. *sniffles* it's just so confusing, i'm healthy except for this and it's just hard to understand ... i mean, what i'm experiencing lately, is quite different from before i had been diagnosed. before, it would be like, drink a glass of pure OJ, and yes, i'd have to go to the potty a lot, and that would be like a "flare" i'd assume, but then after it's passed through my system i'm fine again. but this, is different. the feeling like i still need to go, and sometimes having a lot more frequency throughout a certain period of the day, and then the rest of the day, feeling a little more normal, but not completely; having a soarness in my inner thighs and more urethral pain then before (not awful, just kinda a dull pressure). *shakes head* i'm just so sad and confused about it ... well, again, thanks for listening and trying to help out, i know that there's really no "solution" or "answer" but talking helps, not just by making me feel better from "getting it off my chest" but, from talking and bouncing ideas of each other, we learn more about this "condition" that many of us don't understand ...

lots of love, bunny

[ICNDonna]

Stress can be a potent IC trigger. And coffee is a problem for nearly all ICers. It could be that the stress you've been under, added to the coffee, is a problem for you. I think it could be a good idea for you to skip the coffee and orange juice for a while to see if you feel better --- then if it helps, you can try small amounts to see.

Sending encouraging hugs,
Donna

[Sarojini]

I agree with Donna completely; stress is a huge trigger for me, and I think skipping coffee and orange juice would be a great idea for a little bit to see what happens.

Also, are you eating in the dining halls and things at school, or going out to eat a lot and/or ordering pizzas late at night? If so, there are a lot of hidden no-no's in institutional and restaurant food -- for example, many things they make contain MSG, which for some ICers is the kiss of death when it comes to bladder issues (I'm one of them). And pizza -- the tomato sauce is an acid no-no and many toppings like pepperoni can also contain MSG and nitrates and these irritate sensitive bladders. Can you try cooking some bland stuff for yourself for a couple days to a week and see if perhaps that is the trouble too? Just wondering if maybe this could also be contributing to your troubles lately.

Whatever the cause, I really do think you should perhaps pursue a formal diagnosis, and then try out some of the IC treatments, even Elmiron. I've been on it for, oh, let's see... 9 months now, and I do think it helps with the frequency and urgency, although it took a while to kick in. I've had no side effects to speak of, except I bruise slightly easier now.