is it possible???

[savanna]

hi everyone,
I hope u all have luck in your treatments for IC... I have a question that i hope someone can help me with. I cannot take alot of the meds for IC for various reasons so diet was the one thing that I was hoping would help me and My horrible bladder pain. I guess I have taken it to the extreme because I have lost 15 pounds and I am at an unhealthy weight of 88 pounds and 5"41/2. basically I gave up everything that I was supposed to and eat only rice or pasta,veggies and sometimes chicken--no additives or spices or sauces...When the pain started I was very healthy with no problems whatsoever so I know being thin is not the cause of my bladder pain and I also know that I will get sick in other ways at this weight. So what I am wondering is........ Is it possible that I can have a problem with ALL FOODS and that my bladder is to sensitive for anything? or is it possible that Foods are not my problem at all and this is just what my IC is??? I am in pain 24 hours a day and it is agony for me and of course has taken a big toll on me,my kids and my hubby:(:(:(

[Sarojini]

It's unlikely you are sensitive to EVERYTHING. However, it could be that your IC causes you much pain, and you need to discuss it with your doctor to try and get some pain control -- if your uro or primary care doc will not help you with the pain control aspect, you may ask for a referral to a pain clinic in your area. These are usually staffed by anesthesiologists and other doctors who are trained in many methods of pain control.

[glowbug]

What are you drinking? Do you smoke? Are you taking any other meds, birth control? I'm not being nosy, just wondering if there is some other cause for your pain besides food that you may possible be over looking.

[Raelyn]

I recommend the Amrit Willis book to you. It gave me new insight into the disease and taught me to follow a more alkaline eating plan. Your diet could be quite acidic with the pasta, rice and chicken. I started with pH tape to measure the acid or alkaline levels in the urine. I was very acid in the beginning but with more vegs., fruit, sweet potatoes, squash, white potatoes, sprouts, etc. it is now in the normal range. My pain level is much more comfortable now. Good luck to you.

[~*~Christine~*~]

Hi savanna :welcome: to the board

You seem to have the same problems as me with food and after having IC since I was 16 (21 now) I can say that some days anything can flare me, even spring water, and other days I can eat almost anything I want and nothing will happen. The only thing I eliminated is highly acidic foods such as apples, lemons etc.
Unfortunetly, there's nothing much that can be done for people like us, maybe try taking a Pyridium with your food to limit the pain and drink lots of sprinf water with all your meals
:grouphug:

[Janie Miranda]

Are you on Elmiron or anything to help your bladder lining rebuild or is Elmiron one of the meds you can't take? Sometimes people find they can eat more variety after they have been on elmiron a while.

[savanna]

thank u guys for your replys... I do not smoke or drink or use any kind of lotions owith hemmicals..I do not wear make -up or nail polish (because I thought maybe that would hurt me) I do not work. I do eat the sweet potatoes or white potatoes like u suggested and stay away from the other veggies. I cannot take Elmiron or antidepressents and dsmo and hydro did not help me... This food thing is scaring me though because I am in so much pain and I dont want to make it worse with food problems but yet I am in a dangerous place with my weight and my family is very concerned and the docs say just to eat anything and take more pain meds at this point if it hurts me... But again i am wondering if it is at all possible that all foods would just irratate me or at the other end---maybe foods r not my problem at all and it is just my ic?

[ICLori]

Hi, Savanna, I'm sorry you are hurting so badly.

I seem to be a minority here on the IC boards - I truly believe that IC can cause pain even if you are not eating or drinking or taking anything "wrong."

Because so many here have rather mild IC that is brought under control oftentimes by diet etc., and they only experience flares here and there, they think that everyone is like that - that if we experience pain on almost a daily basis, it must be because we are doing something "wrong."

There are a lot of different degrees of severity to this IC. Sounds like you are in the same boat I am - my bladder is going to hurt oftentimes no matter what I do or don't do. Of course, I don't aggravate it on purpose, I do have to be careful, but even being as careful as careful can be, I still have bladder pain because....well, because I have IC, that's why!

And I suspect you have bladder pain, too, because you have IC - not because you are eating the wrong foods or thinking the wrong thoughts or whatever.

I agree with others here - time to talk about pain management with a doctor.

Blessings, hope you feel better soon,
Lori

[ICNDonna]

I'm following my IC diet, but I still have a problem with weighing too much! I suggest you read the diet information in the Patient Handbook http://www.ic-network.com/handbook and plan your diet from the list of usually okay foods. If you plan ahead, you can have a healthy diet even with the restrictions on some foods.

Donna

[diane57]

Lori, just wanted to let you know that not everyone with mild-ish symptoms thinks that IC is always controllable (sp??) by diet. I wonder, if we took a poll, how many people would say that everyone's IC could be bettered by diet alone? I definitely don't think that's automatically true. My symptoms are mild-to-moderate, and sometimes what I eat affects me and sometimes it seems not to have much of an effect at all, and I think for many of those with more severe symptoms the same would be true. I stuck to the diet like glue for the first few months after I was diagnosed, and lately have become quite loosey-goosey, and my symptoms have improved more in the loosey-goosey time than the strict time. I truly think that often something else is flaring up our bladders and that even if we all stuck to the diet 100% there would still be a lot of symptoms among us. I guess sometimes on the boards we do hear from people who "lecture" others that if only they followed the diet exactly, they would have very few symptoms, but I agree with you, there's more to the picture than that. Everyone's different and I think the best we can all do is just experiment to see what works for us. For those who get great improvements with the diet, that's excellent, but for those who don't, we should avoid "blaming the victim".

[Cricketmk3]

Savanna, what do you drink? (Not alcohol.) I drank milk at first and found out that it was my main trigger and can eat most anything now that I don't drink it. But...it may be true that diet does not help your pain. I know you probably don't have much of an appetite when you are hurting but eat what you can to keep up your strength.

[savanna]

thank u again for your responses... I only drink water(bottled and in fact I have never been a soda or coffee drinker and I am lactose intolerant so I stay away from dairy as well.) Food in the past never caused me bladder pain(just medications) ..than out of the blue the pain came and has been with me 24-7 since September. I have always had frequency 20-30 times a day since I was a child but never pain ...I was healthy and happy until September .. maybe I should just start eating anything again except because of my 24 hour pain..I just cannot tell if it will be related to food or not??? I am just so thin right now and following the diet doesnt seem to be helping me-in fact it is probably hurting me in other ways:9 So it would be interesting to know how many people can eat what they want(or dont agree that the diet plays such a large part)

[Betty-Jo]

Hi out there, I have a question, I really need to know if popcorn with butter is an ok food? I just love it and miss it terribly. I am a very severe IC patient, so foods are very limited right now for me. Hopefully someone will give me advice. Thanks

[littlebear]

Hi Savanna,

The diet can be such a tricky thing. After two years of working with several different lists, I was sure that it didn't make a difference for me. Then, after nothing else seemed to work well enough for me to live a normal life, I decided to try the elimination diet and felt even worse . . . I got so desperate that I began eliminating from the elimation diet! I ended up eating only turkey and rice for several weeks, and even then my symptoms were out of control. Well, it turned out that rice and turkey (and several other meats like chicken) were actually problem foods for me--along with a bunch of foods that are in the "usually safe" columns of most IC-friendly lists. Of course, you know your experience and what's best for you, but I thought I'd write in because of the earlier message that said maybe it is the rice and chicken (and even some of the veggies) that are bothering you.

Since everyone is different, it can be a really frustrating task to locate which foods bother you and which foods don't. For instance, after the elimination diet and several months of trial and error, I finally had figured out about 10 foods that were safe for me. I decided to take a break from testing new foods and just settled into eating those 10 foods in order to get a week or two of good sleep (and I did!). Then, out of the blue, all my symptoms came screaming back. I twisted myself into knots for two more weeks coming up with and testing theories about what went wrong (pears too green? vinegar ricotta cheese becoming a problem because I've been eating more of it recently? new toothpaste? stress?, etc. . .). After nothing was working, I started to think that maybe my good days were a fluke and that diet didn't really make a difference for me after all . . . I just discovered last night, though, that the pita bread I had been eating twice a day for months without problems now has new additives (niacin, riboflavin, other B vitamins) listed on the package. I haven't eaten it today and, so far, I feel much better. So, I thought I'd give you some encouragement to keep experimenting with the diet here and there when it doesn't complicate your health in other ways--because even though it can drive you nuts trying to figure it out, when you find out what works for you, having a list of your own "safe" foods can be just wonderful. It does sound like some folks just don't get any relief from the diet, though, and that you know your own body, your own history with IC, what works best for you, etc. Either way, I want to send you all my support and my best wishes, littlebear

PS You may be doing this already, but I also keep two really detailed journals of food & drink and of voiding & frequency (along with other IC symptoms). Comparing the two journals and looking back over them after a few weeks really helped me to spot some problems I might have missed otherwise.

[mlb]

I got down to 93 lbs. at 5'4 and stayed there for two years. You can't stay where you are at. If you can't take Elmiron, do the treatments or take anti-depressants and you are still in pain, you may want to consider taking Neurontin. It is an anit-seziure drug that helps control pain. It works well for many and may help you get somewhat back to feeling like eating. You didn't mention what type of pain you have or where. Is it bladder, urethral, burning, stabbing, aching???? What ever type it is, you need relief. Don't wait to see someone. A alkalizing diet should help a little too, it doesn't help everyone. Wish it did.

[purpleviolet]

Just to join this discussion - I've IC for 35 years and I still haven't identified all the foods that bother me just I know coffee, tea, strong citrus (but not always), maybe apples (but not always),alcohol. When there is backgound pain it is hard to see what is contributing to it. One time I went on the ATKINS diet and I didn't get bad the way I thoght I would - maybe because meat ends up alkaline, maybe because no fruit? So, recently I tried the Perricone diet and I was bad (lots of salmon/fruit/veg) but it may have been because I was brewing an infection...I was also adding cinnamon to whatever I ate/drank. Whenever I want to blame a particular food, then I realize along with it were five or ten other ingrediants/food I ate with it or just before it. I agree that testing the PH might help you identify. I used PH control pill for a short while and didn't notice much difference. Sometimes simple baking soda in water helps - try that (follow box directions) I think a teaspoon a day or so divided up is OK, unless there is a salt restriction. I've tested my urine and there wasn't necessarily a correlation between PH and pain, so I guess I'm not much help.