I WAS doing so well!

[blue]

:headbang: :rant: :shake: :cussing: Then I went and ate boxed Dirty rice! I used mixed vegetables instead of meat, but I guess something in the box sent me into a flare!

I'm in pain!

[AmandaRN]

Sorry to hear that you're in pain. I have to admit I've been very lucky diet wise. I continue to drink tons of diet pepsi daily without increased pain or frequency. I did stop for a couple of days to see if it would make a difference and it didn't. I would be miserable if I could'nt drink my diet pepsi. So far I've only had problems with two food items. I made beef and rice with soy sauce and was in so much pain 1 hour later and i hurt the rest of the night. The only other thing that bothered me was a particular brand of bottled water. I drank 1/3 of the bottle and then I had to go to the bathroom every 30 minutes the rest of the night. I was at work so that was difficult. Hope you feel better soon.

[blue]

Wow, you are so lucky1

What are your main symptoms and how are you controlling them?

[AmandaRN]

My worst symptom is left groin/pelvic pain. Without pain meds I have a constant severe pain in my L groin. I could barely get off the couch until I started ms cotin. I just started elmiron and elavil and hope those will help the pain enough that I can get off the morphine.

[dyno]

Blue, I hope you are doing better soon. I have done that before and then wonder what set me off.

[Sarojini]

Blue,

I'm so sorry to hear you went into a flare... it happens though. I did it too... I snuck a couple mini-size chocolate bars leftover from Halloween because I was craving chocolate due to my approaching menstrual period, and the chocolate + the period sent me into one horrid flare on Friday! Then my IBS began acting up, and then Saturday morning I woke up with a migraine (I did that today too!), also probably from the little bit of chocolate and my period. Just one of those weekends I guess!

Anyway, I'm sure you know this by now, but just drink tons of water to flush out whatever the offending substance is. Take it easy for a few days, use your Tums/Prelief/baking soda in water (or whatever your preferred acid reducer is), curl up with your heating pad, and enjoy a good book or magazine.

SOOOOOO sorry you're flaring! Hope it gets better soon!!!! :grouphug:

[ICNDonna]

Just remember --- this flare will pass and you'll feel better.

:grouphug:

Donna

[kelly McC]

hope your feeling better
Huggs,
Kelly

[blue]

Thank you guys so much for the love. I can always count on the support around here! :)

[Rosalie]

Hope you are feeling better today. I had a major flare yesterday and still haven't a clue what set it off only that the day before was a really good one. Can't have that happen now can we? I feel like I was being punished for thinking that it might last. Oh Well, on to tomorrow!
Rosalie

[blue]

rosalie, I am feeling better.

I hope you get to feeling better also!

[ibtracy]

Glad to hear that you're feeling better now. :woohoo: I tried responding to the PM you sent me and I also tried to email you info on the corn bag but can't get through either way. Your inbox is too full and when I try to email you it gets kicked back to me. I don't know how to get the info to you. Let me know if you get your PM message box depleted down a little and then I'll resend you the information, okay?

So glad to hear you're feeling better, I've been in a terrible flare since last week and it's relentless. I'm in chronic everyday pain from IC anyways but this has been much much worse!

Hope I can get that info to you because I think you'd be very pleased with a corn bag and you could use it at work while dispatching and when the guys come in you can use it as a conversation piece. Let me know, okay?

Tracy K.

[Cricketmk3]

AmandaRN, I'm surprised you can drink so much diet pepsi! There are so many things in it that is a trigger for me. Caffeine, acid, artificial sweetner, carbonation. Are you sure it is not causing you pain? I don't mean to question you but I'd hate for the soda to be causing you pain and you not realize it! You said you went a couple of days with no decrease in pain. Maybe if you went a month or two without it you would not have significantly less pain. I know it would be hard to do but it would be worth a try just so you'll know for sure.

[AmandaRN]

I'm positive the diet pepsi isn't making my pain worse. My pain level changes minute to minute some days, but the few days a month when I have no pain I still drink alot of diet pepsi, so I don't think it affects me. So far I've only ran into 2 dietary items that make me flare. I work 12 hour shifts if I didn't have my diet pepsi I'd be a zombie. It's my one true addiction and I can't imagine giving it up. I know I run across more foods and drinks that cause me to flare as time goes on.

[Cricketmk3]

Amanda, just checking. I didn't want you to hurt unnecessarily! :-)

[AmandaRN]

I do drink less when I'm in a flare. I try to drink only water. I think that when I'm in a flare the diet pepsi makes it worse sometimes. I need to cut down on it, or at least the caffinated diet pepsi. I know I don;t drink enough water so I'm really increasing my water intake. I make sure I have bottled water in the fridge at all times.Thanks for the concern. :) :)

[blue]

You know, my mother really criticizes my purchasing bottled water! It really ****** me off!

I drink so much more water just by having bottled water in the fridge! I have an entire shelf dedicated to bottled water!

[mayray518]

I dont pay any attention to people who criticize, THEY DONT HAVE IC. Anything that works and makes you feel better is worth doing.

[blue]

I know, it's just so frustrating!

[AmandaRN]

Blue
I don't know how the tap water tastes in Texas but here in Arizonait is down right nasty. Not to mention warm to hot. I have to have bottled water or I won't drink any water at all. It's worth the price to have it in the fridge, nice and cold. In arizona everyone buys bottled water for the most part.

[Joyaur]

I have great sucess when I am in a flare if I take four Prelief with each meal...

[Leslie L]

Hey Guys. I'm new to this board. I have had IC since 1992. I have been taking
Elmiron for the past 7 or so years, and it has been helping a lot. The pain from my
IC virtually disappeared. I would have the occasional flare up, but they only lasted
a few days. I have been now suffering from a flare up for over 2 weeks now. I
don't understand what brought it on. I have an appt. w/ my urologist for this
coming Thursday. Now, I want opinions here... do you guys really think stress can
cause a flare up? I have been under a lot of stress lately. I just broke up w/ my
boyfriend of 2 years because I found out he was cheating. My job is just God-awful,
and I am having a lot of family problems. But who among us does not have stress?
How do you get rid of stress? And if stress a possible cause of a flare up, then how
do you get rid of the flare up?

My Dr. has prescribed Vicodin for me, which helps. I'm also taking Xanax to help w/
anxiety. I have been popping ibuprofen like it is going out of style and I have been
using a heating pad at night. The pain is so intense.

What should I do????

[Joyaur]

Most certainly I believe stress can cause a flare up..
Take prelief .it will really help..

[Leslie L]

Thanks Joyce,

Where can I obtain Prelief? My Dr. gave me some free samples, but I have run out.

Am I the only one who is terrified that a flare up will turn out to be a permanent
thing? Is that possible? Is it possible that all of a sudden the Elmiron stops
working? I'm really scared....

[Joyaur]

Albertson store has it in the ani acid section..
I had the exact same thing happen to me...was finE for 7 years then BANG had a flare that lasted four months...I took an antibotic without consulting a doctor...stopped that, when I was out of pills, Flare was still there...took the purple pill and all that did was make me ill...took about four prielief with each meal and next thing I know I was better,,,Haven't had ANOTHER FLARE IN TWO YEARS..

[hurt]

Hey everyone, I have a question when I have a flare I cant tell if it is my IBS or IC, how can you tell?

[ShelbySW]

I was a diet pepsi freak too. Unfortunately I had to give it up. I started noticing more pain after drinking it. I tried normal soda and I found it doesn't affect me like diet does. One of my major culprits is the artificial sweetners. It also depends on the day as to what else will throw me into the cycle. I can eat my vegetarian pizza (little or no sauce) and be fine or in pain. I cant ever predict. I'm a lactose-intollerant vegetarian anyway, so I only have to suffer w/o fruit. I'm used to cutting out everything else. I have a suggestion though. Try something called Gotu Kola. You can find it at any health food store. It creates a protective lining in your bladder. You can get drops or pills. I found the drops to help immediately. If I have been REALLY good about my diet and stress, and I take the drops for a full day before, I can have a glass of wine (or two) without causing a flare!!! I take the gotu kola capsuls as a daily part of my treatment plan.

[Leslie L]

Thanks again, Joyce. I picked up the Prelief at a pharmacy on my lunch break and
took 2 before eating lunch. It hasn't helped as of yet. I am so frustrated!! I had
been doing so great, and now this. All my previous flares lasted only a day or two.
This flare will be 2 weeks and 1 day tomorrow. (But who's counting?) The pain is
just so unbearable, and my Dr. is reluctant to call in prescriptions for Vicodin for some
reason. I've been taking Xanax with ibuprofen and that helps a bit. Tried a heating
pad for the first time last night and that seemed to ease the pain a bit. The pain
is in my bladder and urethra. It feels like that whole area is on fire.

I don't think I could bear it if this flare up lasts 4 months!

I'm grateful I discovered this website. It helps so much when others understand
and can share their experiences and advice.

[ShelbySW]

Try taking baths. Those seem to help me more than heating pads. Warm baths. Also, I know it sounds weird, but when I get that burning sensation after I pee, and it feels like I have no control, I use an icepack. I wrap it with a towel so it doesn't act like sticking your tongue to a pole in January ;) Get one of those squishy kinds so it form-fits. Find what area helps you best, for me, it's just below the vagina all the way up to the top of the vulva. I put some weight on it just to get the cold feeling. It helps with the burning in my urethra. It doesn't help with the actual bladder pain. Unfortunately pain medication is the only thing I've found when flares get that bad. If your doctor is reluctant to give you pain medication for a chronic pain disease, you need to find a doctor that will. At no point should you suffer! You have rights! Also ask about going in for a DMSO instillation. That may help as well. While you're there, hit them up for the pain meds to keep on hand for situations like this.

[Leslie L]

Thanks for your suggestions Shelby. I'll try an ice pack. I am also going to pick
up the Gotu Kola you recommended. I googled it, and it seems as if it may be
effective. My Dr. was supposed to call in a prescription for Vicodin for me last night,
but he never did. Fortunately my friend had some left over from when he had
dental surgery and he gave me some.

I used a heating pad again last night and it really seems to offer some relief. I
pray that this is just a flare and if it is, I cannot wait until it's over!!

[shennan]

can be bought at most drugs stores and some supermarkets/grocery stores.

ibuprofen---please be careful with this because it can cause gastritis and other problems. please talk to your doctor about how much you are taking.

good luck!!

:)
shenna
in my opinion always.

[Leslie L]

Has anyone ever heard of anti-depressants offering pain relief?

[Hangin' Tough]

Leslie L
Most doctors subscribe to the theory that certain trycyclic antidepressants also have some pain diminishing capacity. I think you will find many, many people on this board who will tell you that they get siginficant relief using trycyclics such as elavil. Unfortunately, I didn't have any luck with them.

Steve

[Leslie L]

I was curious because I had been taking Zoloft for a while, and then I stopped about
2 months ago. I'm wondering if this painful flare up has anything to do with me not
taking Zoloft anymore.

[Leslie L]

One other question: who has experienced this? During a flare up you drink a ton
of water non-stop and you never have to urinate?? When you press down on your
bladder, it feels empty.

That's what I'm going through right now. My stomach is all bloated and my legs
are bloated. I've been drinking water and caffiene free tea ALL day and when I
push down on my bladder it feels empty. I haven't had to urinate at all.
What is going on??? It's as if the water is leaking through my bladder and
going all throughout my body.

[carlav19]

Hey Blue-

When I get a flare I take a couple Uristat pills. Now, i know these are supposed to relieve the pain of UTI's, but I swear by this stuff. You can find it at your local Walgreens and sometimes even Walmart and other pharmacies. I don't know how I would have lived w/out these pills helping me w/the pain these last 6 years. There are other UTI pills that work, but not as well. One of the most important routines I go through is: 1) as soon as you feel a flare comming on drink a large glass of water as fast as you can (I mean chug it). Then take a second glass and try to do the same thing. Wait a few minutes till your stomach settles and chug another glass. Then, chug a glass of water everytime you have to pee. This will help dilute what is causing the flare and the Uristate will numb it up. Just don't forget to drink the water! Hope my routine that has saved me and 6 six years of my life will help you!

All my love,
Carlav19

[carlav19]

Leslie L-
I think that you may be dehidrated! You need to drink lots of water every day...not just some days. But, then again, that's just my guess.

Carlav19

[carlav19]

Who else here has used UTI Pain relief pills, especially Uristate? You know, the ones that make your pee orange?;) If you have a nasty flare up and you need almost instant (w/in an hour to 2 hrs) pain relief, this is how i've gone. This and Chuging water...not sipping and drinking it over a period of a day. I mean, full out drinking so much you literally can't put anymore in your stomach? So much that you even start to feel a little light headed? You need to overload your bladder and the more you pee, the better you will feel. This is especially if you take a couple of Uristate with the water. I personally try to drink so much water in a day that it really does keep my flares limited. And i try to take the Uristate only when I REALLY need it and am in absolute pain.

Anyone else done anything like this? Or have differn't strategies?

[Leslie L]

Carla:

Thanks for the suggestion about the Uristat. I'm going to purchase that today.
Drinking a ton of water is a good suggestion. I do that also when I get a flare up.
I'm finally getting to my Urologist today, so hopefully I will get a prescription for
pain pills as well. I don't want to jinx myself, but I think my flare may be subsiding
a bit. After 16 days, it's about time!!

[carlav19]

Leslie L-
I hope the Uristat helps you and I hope your flare subsides....I'm lucky I guess, my flares only last a week or less usually.

Carlav19

[Leslie L]

Thanks Carla. I actually went to my Urologist yesterday and he gave me a
prescription for 60 extra strength Vicodin. THANK GOD!! I also had an ultra-
sound while I was there, and they discovered I had gallstones.

Does it ever end??? : (

[carlav19]

No, I don't think the pain ever truly ends! I just got a flare up that started yesterday. It's not too bad of one, but the pain just never fully goes away. As for the Vicodin, I took it once before after foot surgery and it made me throw up. :rolleyes: I guess that stuffs not going to work for me then! :) I'll have to stick with my uristat... Hope you start feeling better! :)

Carlav19

[LeahT]

I'm new to this. I sure found some helpful info just reading through this. I'm sorry for your pain Blue, is it better if I tell you I learned from your pain???? Sarojini said something about baking soda and water? What is that please? Sounds cheap, I'd like to see if it works. I went to the health food store this weekend and almost died when I saw the prices of remedies and healthful food. Thanks! I really do appreciate this chance to learn from real people who have this real pain!

[Leslie L]

Carla,

Thanks for your well wishes and your suggestions. I've been taking the vicodin
occassionally, but my flare seems to be subsiding to some degree. I don't want
to jinx myself, though.

I hope your flare is shortlived. This is a God-awful disease, isn't it? Nobody
understands how horrible it is and how it drains you to be in constant pain.
I don't have the frequency problem as much as I have the pain problem.

My Urologist told me that if the pain persists I should come in for an instillation.
I have never done that before. He said it is heparin based, so there is no
chemical cystitis.

Has anyone here had instillations?

[Rosalie]

Bicarbonate of Soda is found in the baking section at the supermarket. One teaspoon to a glass of water. I've only just found this remedy from these boards and it truely helps.
I also mainly have the pain problem. Except last night I was up to the toilet four times. A bit of a record for me. I might only pee about 10 or so times a day which, by comparison to others here, isn't much at all.

[Leslie L]

I believe that my flare is coming to an end. :woohoo: Everyday I
feel a little better. This one lasted 3 weeks! I have never had a flare
that lasted that long.

I purchased the Gotu Kola in a capsule form that someone had
recommended, so I don't know if that had anything to do with ending this
flare. As I mentioned before, the Vicodin that I took for the pain helped
me so much.

Thanks everyone for all your suggestions and advice. Your help is
invaluable!