Flares

[chainsaw]

I was wondering if anyone experienced anything like this before. Last night we went out to dinner. Dummy me, had a steak salisbury with baked potatoe with butter and sour cream, salad with ranch dressing, coke, decafe coffee and a slice of tiramisu. By the way, this was about 8 pm when we ate dinner. Then I noticed today, I had to go to the bathroom alot. I noticed I went more, than I had yesterday morning. Could this be called a Flare-up? Also, do you get "heartburn" more often with IC? It seems that I have been noticing, that I tend to get it alot, when I eat or drink certain foods.

As you can tell, I have NOT been very good at staying away from things, like I should. But it is hard when my husband doesn't think I have IC, and tells me "eat what you want". He thinks all I have is a small bladder. But from what my urologist tells me, I have only about a 4 oz bladder and IC.

Last night I thought to myself, "I should post a thread and ask for help with my diet from people who have IC and who understand what I am dealing with. I wish there was someone who lived closed enough to me (I live in New Oxford, PA), so that I can call when I am about ready to imbark on some "food" or "beverage" I should NOT be eating. Kind of like the "buddy system" like people do when they are dieting and exercising. I AM tired of NOT watching what I eat and drink. I am tired of having to pee alot. I am tired of having "heartburn". I really want to get into this diet and do what I can for myself to help me out before I head to China (our adoption agency is expecting that we will leave for China on Jan. 21st-they are still waiting on our Invitations to Travel to China to arrive before we have a "definate" travel date). Changing my diet has been hard on me. Esxpecially since my husband doesn't seem to think about me BEFORE he decides where we are going to eat for dinner (he loves Taco Bell on Friday nights before or after bowling). I think sometimes he thinks everything is in my head.

If there is anyone who would like to help me out with my situtation PLEASE let me know. There is NOT even a support group close enough for me to attend.

I REALLY need help. I realize that I have sent LOTS of threads in the past and more than likely have been "diet" related and stuff like that. But this time I am serious about wanting to change. Especially since I realize that by the end of the day ALL I have drank for that day is CAFFEINE and sugar (coffee, pop, etc..) and I am tired of eating things I should NOT be eating.

Thank you all so very much for taking the time to read my thread and for any help I can receive. I will be waiting to hear from you.

Sincerely,

Kim

[ICNDonna]

About the only thing I can eat at a taco place is a crisp bean burrito so if I'm stuck, that's what I have. I do suggest you avoid such things as tomatoes, citrus, coffee, sodas, and salad dressings. I like salad bars because I can pick and choose what I have on a salad. Believe me --- avoiding trigger foods is well worth it. I drank a root beer last summer and spent the entire next day in pain. One thing you might do is to very quietly keep a food and drink diary so you can specifically identify your problem foods and drinks. You may find there are fewer irritants than you know.

Warm hugs,
Donna

[TexasHoney]

Kim, I am sorry to hear your husband thinks it all in your head. All those things you mentioned can irritate the bladder. Habits are hard to change, espically the caffiene habit. All I can say is keep trying and hang in there.

[ShelbySW]

Kim,
I know exactly how you feel! Isn't it amazing how much IC affects your emotions? I have been at this a year now and the most important thing is that your husband supports you! My husband was great but I still felt, and sometimes still feel, very much alone. It's hard for anyone else to understand what we go through because they don't know. The disbelief and "downplaying" is unfortunately something that isn't going away anytime soon. IC isn't a "popular" disease so no one realizes the HUGE impact it has on someone who suffers from it.
Increased frequency is a flare! If that's all you had then I envy you! Mine are HORRIBLE! Just like Donna, I get pain... and a lot of it.
I'm in Salt Lake City and there aren't ANY support groups in the state. I know how you feel. It is really nice to have this site though. I know I'm not close to your area, but you can ask me anything you want at anytime. I can share what I've found helps me and what I've read. Your food-triggers will be uniquely your own. Sadly you're gonna have a trial-and-error phase. It's not going to be fun but it wont last forever. What my doctors suggest was eliminating all common triggers from my diet, then slowly introducing 1 thing at a time to see if it causes any problems.
Are you taking medications for the IC? I've noticed a HUGE problem with heartburn since starting my oral medications. I always assumed it was just because I was taking so many pills. I share your problem though. I cant drink water w/o Tums nearby!
Have you done a Hydrodistension under anesthesia w/ your urologist? That's the surest way to confirm an IC diagnosis. It is also found to help a lot of IC patients w/ their symptoms because it stretches your bladder. I had the same problem when I was first diagnosed. My bladder was less than half the "normal" size. But IC can cause your bladder to harden and shrienk! The first hydro. I had done made me miserable and I didn't find it theraputic at all. I switched doctors, continued w/ my Elmiron and other meds. I also tried bladder retraining. I underwent a second hydro (with hesitations) but I came out with great results. It hasnt helped the pain BUT my bladder capacity is back to a normal size! I use the Oxytrol patches to control the 'overactive' factor and I found they work for me, where nothing else did! When you have a small bladder, a hydro can be agonizing, but in the long run, you'll be able to go longer in between bathroom visits (usually ;).
For the diet, from what I've read, these are things known to trigger IC flares:
fruit
caffine
carbonation
artificial collors & sweetners
tomatoes - store bought (garden tomatoes seem to be easier on ICers)
alcohol
meat & poultry -- fish is OK
dairy
chocolate
ANYTHING spicey
My general rule of thumb is: if it can cause heartburn it can cause a flare!!! If it irritates going in, it will irritate comming out! Wondering what you'll eat for the next while? Look into Vegan recipes. I can give you sites to look at. The more hippy the food, the easier it is on your body. This diet is really easy for me because I'm a lactose-intollerant vegetarian. When my uro told me what to avoid he was shocked that I wasn't in tears. The one time being a vegetarian is easy ;) But I don't envy you! It's going to be hard! Take Donna's suggestion though KEEP A JOURNAL!!
I keep one of all my medications and symptoms, it makes life a whole lot easier! I didn't start until a couple months ago, but it has helped a lot.
Any slight change can be extremely volitile. Keeping a detailed journal of your daily activities, foods, medications, and syptoms will be a great benefit for you! You can waste a lot of time trying to figure out what causes problems for you if you're not paying attention! It took me MONTHS to realize that sitting for extended periods of time irritates my symptoms. I always thought it was something I ate or stress.
I recomed taking your husband with you to a uro apt. I did that. I had my uro explain to my husband what IC is and the things to expect from it. I also had him go to a couple therapy sessions with me because IC is EXTREMELY hard on a marriage! I am a "newlywed" and wanted to learn how to deal with this before it became a problem too big to deal with.
For a lot of us sex is extrememly painful, therefore we will avoid it at all costs. Not many men understand that aspect. I've talked to ICers who don't have sex at all, or maybe once a year, every few months... that gets hard. I must say though, after 4-5 months of no sexual contact your dreams get A LOT better ;) LOL
My husband and I want to start trying to have a baby, but IC makes it really hard. That's my current hurtle. My first uro told me that being pregnant would be the worst thing I could ever do to my bladder and I should adopt. So for the last year that's what I've set my mind to. Then I switched uro's and went to a doc that specializes in female urology and has an amazing background. She said that it'll be tough but there's no reason not to :) My ob/gyn said the same thing! In fact he was the one I went to when I started having pelvic pain. He said he thought I had IC and referred me to a uro immediately. I don't think he'll ever know how grateful I am that he knew what IC was and what to look for!
Anyway, I could continue babbling but you all are tired of reading my post, i'm sure. ;)
Kim, If you'd like someone to talk to I'd be honored. We are accross the country but I have free long distance on my cell phone ;) If you'd like my info let me know and I'll PM you my phone and address.

[Sarojini]

Definitely keep a food journal.. that's a great suggestion. Write down what you eat, and then record what happens afterwards -- if you feel pain, get increased frequency, have heartburn, etc. That will help you find your "trigger foods" quickly.

I'm sorry your husband thinks its all in your head. It really stinks when that happens. My husband was always very supportive of my IC; his problem has been with my fibromyalgia, which he thinks is all in my head. He thinks that if I do heavy workouts and calisthenics at the Y it will go away, when in reality that would likely make it worse -- I need to stick to more gentle workouts, like yoga, my PT exercises, walks around the neighborhood or on our treadmill when it is raining, etc. His problem is that he experienced a coworker a few years back who really didn't have fibro, it turned out in the end, but used it as an excuse to leave early and come in late daily -- so now he thinks it's some disease people make up to get out of doing things. Unfortunately, it is quite real when you really do have it!!! I also have myofascial pain syndrome and need to go montly for trigger point injections into my muscles so I don't just lock up. Worse, I've been diagnosed as bipolar, and he likes to think many things are just due to that, and once we've got that under control many of my physical ailments will just disappear. I agree that once the stress of changing moods is gone, things will improve physically, but I don't agree my various ailments will just go "poof" and disapperar.

Anyway, I've had my docs talk to him -- that seems to help out a lot in convincing him that these things are quite real. Perhaps you can do the same... have your hubby come to your uro with you to hear the facts for himself so he knows that IC is a real disease that requires a special diet and medication most of the time???

Just a suggestion anyway, from my personal experience.

Good luck :grouphug:

[Betsie]

Kim,
One thing I would like to add, since I think everyone has addressed the diet and the understaning, etc from your husband.

I have long standing experience here, much more so than IC. If you are experiencing heartburn everyday, you need to see your Dr and take it very seriously. I learned the hard way that ignoring it was the worst. By the time I got help, in an emergency situation, I had done almost irreparable damage to my espophugus. It is a long boring story, but i would urge you to look into this...especially with one thing like IC, you don't need the added complications of serious GI issues. Treated early they are easy to repair, but if you let it go like I did...well, I just wouldn't advise it. I don't follow the diet here persay, but let's just say that many of the foods I avoid on my GI diet, are in the same lists as the IC one...so I guess the food thing has been somewhat easier for me.

Okay just a thought...maybe it's nothing, but everday is too much. Good luck with figuring out the diet and your triggers.

[codyryonwoodward]

Food can be that way. I experience that when I have eaten something I should not. Have you tried an over the counter medicine called prelief (I am not sure about sp). You can usually get this at any drug store. You take it before you eat something you should not or you can take it before your meals I believe.

I dont have alot of heartburn problems but my husband does and I have notice that what effects my bladder as far as food is concerned effects his heartburn and stomach problems. Go figure. Best of luck with the diet. I was a hard core soda drinker. That all I ever drank but now I maybe have one can a day and the rest of the day its water. I know this helped me.