Questions...

[Serenity]

For those of you don't know me... I'm new and although I have not been diagnosed with IC my gyno thinks that I might have IC. She has refered me to a uro and I am awaiting that apt in Dec. My symptoms do sound very much like have IC so I am trying to get as much information as I can. Thanks in advance!

My questions are as such....
1) I think I'm in a flare... which started the begining of Nov. How long do they normally last?
2) I've only been eating rice, pasta (no sauce), pears, peas, almonds, chicken and vanilla ice cream for the past 3 weeks, oh and drinking a TON of water each day. So my question is if my flare is acid induced shouldn't I be feeling better by now? My symptoms really are frequency, urgency, pressure, and a weird pinch or pulsing sensation in the vagina. I also feel achy.
3) My gyno perscribed me Pyridine for comfort until my uro apt. I take it when the pressure and frequency seems to be increasing but it really never relieves me completly. Is there anyone else out there that takes Pyridine this way? If so does it relieve you without feeling you've always got to go pee?
4) Anyone know of a good cookbook for IC reciepes?
5) My husband and I have restrained from having intercourse, is that what most of you do when you're in a flare?

Well I think that's it for now. Again really appreciate your advice(s) in advance.
Sincerely,
Frustrated and looking for Serenity

[sylvieCT]

I feel a lot like you do. My main symptom is pressure. I feel like I am going to get my period all month! except it is completely related to the feeling of having to pee all the time. I use to go every 15 minutes, but now I just hold it and go about once an hour on a good day. I don't have the terrible pain that a lot of people have, but I have a dull pressure pain all the time and on occassion I describe a pinching hurt from the inside. I too have to be officially diagnosed and I am going to a uro-gynecologist in February. I am on Elmiron and have changed my diet. There is probably a lot more you can eat once you learn the diet. At first, I ordered a lot of food here on the website, then I went to a healthfood store and picked up a lot of stuff. It took me a few months to feel better, but I still don't feel 100% better - just not as bad as I use to feel.

[ICNDonna]

Have you read the information in the Patient Handbook? You'll find it at http://www.ic-network.com/handbook --- you'll find information there about diet, as well as symptoms, diagnosis, and treatments. If it turns out you have IC, the best cookbook I know of is, "A Taste Of The Good Life," which was written by an IC patient. If you scroll to the top of this page and click on "ICN Shop" you'll find ordering information.

Warm healing thoughts,
Donna

[kadi]

Donna's already said most everything I would have said. The Patient Handbook diet section & the Taste of the Good Life cookbook have been lifesavers for me. Those & the George Foreman grill!
About water, I drink water with each meal & sip from a 16 oz bottle slowly throughout the day. Most doctors I've seen recommend around 60 oz of fluids a day. If you're drinking a lot more than that, you might want to slow it down & see if that helps. I find that drinking fluids with a meal or extremely slowly helps. Slugging down a large amount of water at once definitely triggers discomfort and spasms for me.

The first few months while you figure out what works for you are definitely hard, but things can get better with time. Hang in there! Wishing you better days soon!

[Katrina]

Hi and Welcome!

1.Flares normally last from a few hours to about a week if you are not yet under treatment and following the diet for a while it may take some time for your body to get to its norm state. Please give that diet some time.

2. Flares may be because of: stress, food, food allergies, nasal allergies, over working yourself, sex, gas, hormones, yeast infections, bacterial infections, car rides, viruses or being sick, being over tired, treatments affecting you badly, test affecting you badly, many other things. I don't know if your flare is acid induced but many times when the diet is new our bladder needs some time to heal.
3. I have never taken that med sorry.
4. there is a full online IC cook book at this address http://www.ic-network.com/icchef/
5. Yes, a lot of us restrain from sex when flaring....but there are also other ways to make it more possible to have sex. Look for that info in the handbook and at http://www.ichelp.com/TreatmentAndSelfHelp/SexAndIC.html

I hope that helps you. I hope you feel better soon.

[Serenity]

I really appreciate all the good advices you've all replied back. Thanks a bunch as right now I am in need of all the advice I can get.

[Kel]

Serenity -

Be sure to check the ingredients in everything. Some vanilla ice creams have buttermilk, for instance. Breyer's is all natural. Check out allrecipes.com. You can search for recipes that include certain ingredients, or do not have certain ingredients. It's really helped me get creative and expand my recipe list.

I find that a strict regimen of Evian water only for awhile really helps when I flare. It usually takes me 2-3 weeks to feel real relief though.

As for sex, I find that a safe position for me is spooning, (sorry, TMI). This doesn't irritate the urethra like lots of other positions, esp. missionary.

Good luck and feel better!

[desolationangel]

hopefully you should be able to expand your diet quite a bit, especially to include more veggies, even herbs and garlic.

of course everyone's different, but i find i can tolerate one kind of ice cream that's not vanilla-- uncanny cashew from ben and jerry's. just caramel and cashews!

good luck, and hopefully you will be on the right track soon.

[kadi]

Hey, just a note. Evian doesn't agree with my IC even though it's on the "safe" list. I find when flaring, distilled water is my best bet. I'm a big fan of Dreyers Dulce de Leche ice cream (caramel swirls!) and Vanilla Ice cream. For some weird reason I can eat CoolWhip too...
Enjoy!

[Sarojini]

Hi Serenity,

I find that Pyridium alone doesn't really relieve my frequency and pain... Pyridium Plus contains extra ingredients like an antispasmodic and a mild painkiller and that seems to help more in addition to the other meds I take. You may want to try that while you're waiting for your uro appt. It may help out a little more.

I'm sorry you're going thru all of this, and everyone else has given you some great advice already, so I'm just gonna :welcome: you to the ICN and tell you you've found a great place to come for info and support. I hope your appt. goes/went well, and you can get a diagnosis soon! The sooner you find out what's wrong, the sooner you can start treatments that can help you feel lots better! :)

[Serenity]

Thanks everyone again for your replies. I did have my apt and now awaiting my Cysto, which is scheduled for Jan 4th (I'm very nervous!). I did have a CT scan done and the uro called me yesterday and said that everything seemed to look all right but that the report indicated a possibility of a kidney stone developing in one of my kidneys. He said it was very small and it could even be scare tissue, too small to tell... What I'm I suppose to think of that...? Also I've been branching out on different IC friendly foods... and yesterday for lunch I had a baked potato (don't know if that was ok or not) but it sent me into a whirlwind. I was so uncomfortable for the rest of the night and even this morning. It was plain baked potato with a little butter on top. Could that cause me pain and discomfort...? Was it all the potassium in the potato? I hear about potassium testing but I wasn’t sure if you were to stay away from potassium foods… Sorry so new and so ignorant to all this. Also I drink water that is filtered through Brita… is that pure enough or should I be drinking only bottled water? Thanks again and in advance.

[Annie2]

I think most of us are fine with baked potatoes. Potassium is a very necessary element to the human body and I would caution you not to try to avoid it. When ICers mention the potassium sensitivity test, we are talking about instilling potassium directly into the bladder which, in an IC bladder, does cause pain. Eating foods that contain potassium does not have the same effect on the bladder. There are some out there who think eating lots of foods high in potassium might be irritating to us. However, the danger of not getting enough potassium in your diet is very real and could be very hazardous to your health. So please do not try to limit potassium intake.

You have been following a very limited diet and maybe it's time to expand it a bit. Check out the diet that you will find in the Patient Handbook. Why not try expanding your diet to include more things listed in the "usually ok column"? As others mentioned to you, just be sure to read food labels carefully and make sure the foods you buy do not contain any ingredients that are irritants. You said you are eating chicken but my question would be what kind of chicken are you buying? Many brands of poultry are injected with a solution which is intended to keep the meat from drying out during the cooking process. Unfortunately, the solution that is injected can contain substances that are irritating to some of us. Carefully reading labels on everything takes a lot of time but you can save yourself a lot of grief by doing it. It takes time to learn all the ins and outs of the diet but you will get there. The guide in the Patient Handbook is very good and should help you. In the beginning, I always took a copy of the food list with me when shopping so I could compare ingredients listed on foods with the list of problem foods. I no longer have to carry that list because I know it so well now but I certainly needed that help in the beginning when I was starting to learn about the diet.

As others explained, it is not just acids that can cause you to flare. And foods are not the only things to throw us into flare mode, either. It takes a while to learn all of this. It can be quite overwhelming at first so be patient with yourself. I would suggest reading as much as you can about IC, the diet, treatment options, etc. However, pace yourself and don't try to learn it all at once! We're here to try to help so feel free to ask any questions you may have!

Oh, and about your water question...many of us find we do best by drinking bottled spring water. Some are fine drinking filtered water. It really is an individual thing. You may want to try different brands of bottled spring water and compare how you feel afterwards to your reaction to drinking the filtered water. In time you will learn what works best for your bladder.

:grouphug:
Annie

[traceann]

Hi! I just wanted to thorw my welcome into the mix! Lots of great advice already given...some I am going to put into practice as soon as I get to the grocery store, namely the 2 different ice cream flavors to to try, besides vanilla...although, I think I have formed a dependance on Breyer's French Vanilla...yum! When I first started the diet my question to the board was "how can I tell what foods are no-no's when I hurt whether I eat or not!" LOL But as time has gone by ( Ihave been on it now strictly for about 3-4 weeks), my poor bladder has considerably calmed down. Now I would be able to tell if something I ate was a culprit (although I do have a nasty habit of eating 2 or 3 possible culprits in one day, so then I am back at the starting board in trying to figure out which one it is! ugh.) But for me at first I think my bladder was just so plain irritated that even the "good foods" seemed to aggrivate it, but in fact it probably wasn't the food at all, just an angry bladder in general. I was very frustrated to say the least. It was like "I am doing all I am supposed to be doing, why are you STILL hurting me!!??" It probably took a lot of "abuse" to get to that first big flare, so it took awhile to calm back down, even doing all I was supposed to be doing. Does that make sense? Most days I feel pretty good now! Not 100%, but a far cry from that first big flare.

I am huge into veggies and have come up with some pretty tasty stuff, even the non-IC-ers in my house like them, good thing I love them and pasta, they seem to be my favorite combo. I keep steaks individually frozen for me, some "safe" pork chops (no additives), etc. That way I don't have to defrost a whole bunch, if I am just cooking for me, when everyone else wants something that I choose not to have (I don't say "can't"-- I then feel deprived, feels better if it's a "choice")

Well, that's just my 2 cents thrown in. I do hope you feel better soon, just keep plugging away at it, you will find relief--although I know it's never as quickly as we would like it!!

Hugs and Warm fuzzies to you!!!
Tracey :)