how to test foods?

[ScarednConfused]

I just had a quick question. How do people test foods? I mean i can eat spaghetti sauce, orange juice, pickles, and other things on the no list. I dont do it often...actually only once since i was diagnosed to test it. My question is though how do you know if a food is okay? Even if its something not as bad like chocolate or chedder cheese. If my bladder is okay with them does that mean they are okay? I feel like someone could come out of remission or one day feel worse if they kept eating stuff like that that they thought was okay. so how do you know? how do you know if what your eating even though it doesnt seem to hurt your bladder isnt over time going to hurt you? even things like blueberries. you could think its okay cause your bladder doesnt hurt but couldnt it secretly be doing damage? its makes me second guess everything i eat and i have no idea whats good or not. i mean i can eat pickles and all that stuff but im nervous eventually it will catch up to me. i dont know if i am making sense but i just want to know if a food is bad for me or my ic and i dont know how to know if it doesnt hurt me. like i said it makes me second guess everything i eat and if its okay. even stuff like fruit or bread. anyone else feel like this? what do you do?

p.s. i would just stick to the IC diet forever but i eventually want to venture and try different foods so im not eating the same 5 things every day. but i dont know how to do that and accurately test foods.

[ICNDonna]

If a food causes pain, it's a good idea to avoid it. I know I can get away with a few things on the "caution" list, but if keep on being careless, it does build up and eventually cause my bladder to be painful. It's worth it to be cautious.

Blueberries are okay for most of us and have some of the same benefits to the body as cranberries, but they don't have the acid.

Sending encouraging hugs,
Donna

[ScarednConfused]

thank you for replying donna. my thing is food doesnt really bother me. thats why i dont know how to test it because i am scared it will eventually build up and cause lots of problems even though it doesnt now. i want to try more foods but i also dont want to eat stuff thinking its okay but slowly its hurting me. ya know?

[Jadia]

I would recommend a food journal. This can help you track what symptoms you have (if any) from certain foods. I know I have learned a lot from experimenting this way especially for my limits. Like I am ok to eat fresh tomatoes or even stewed ones...but I better not touch a sun-dried one! I can handle roughly 2 servings of fruits/juice a day, but if i go over that there will be trouble. Apple juice will cause me slight burning that is relatively short lived, if I water it down that helps avoid this altogether. I can handle Salsa about once every 5 days though I have to always avoid the chunks of jalapenos in it. If I eat one of those, instant pain within about 30 minutes...I leave them out, even if the juice is in there, I am ok! So maybe this will help you too.

My suggestion would be to just add things slowly. Try something new one day...then wait. The next week maybe try a bit more of it, like eat it twice if you like a few days apart. Hopefully like this you may get a few of the warning symptoms instead of a full flare. And with it all recorded you will be able to review them easily to find exactly when you started noticing an issue to find your limit on things.

[ScarednConfused]

thank you so much for responding. i will try your suggestions and do it slowly. ive tried before but its been hard to figure it out. ill try the journal again though and see. hopefully it wont build up and cause even more pain later down the road.

[earthlady]

I had a really hard time figuring out what bothered me because my flares didn't come on in an hour to two. It seemed like I would have a cumulative and delayed reaction. As tedious as it was I had to do a food and drink diary and chart how I felt over the course of a month or two. I had to eliminate something for a good while before I knew if it had been bothering me or not. So when I was feeling really good I would check the diary and see what I had eliminated. I tried so hard to keep some regular tea in my diet even if it was decaf, or small amounts mixed with almond milk, or loading up on prelief but - sigh---- I had to give it up altogether. If you keep a diary you may find out that there are certain foods or drink that don't bother you at all and you may not be very food sensitive.

[JET3539]

I have done the diet and everything is painful!

I have IC and started with the diet months ago, but kept elininating with pain reactions and eventually now everything is off limits. i cut out all supplements over a month ago, and am on some meds and doing instills once a week with sod bicarb, heparin, and lido and no change. I am taking demerol and ativan and am getting nausea and weaker. I have lost 40 lbs and cannot see how to keep myself eating. has anyone out there been through anything like this? I have chemical sensitivities too. Please help!

[nineteenwinters]

Are you saying every single food (even all from the bladder friendly list) you eat causes you a flare? If so, it doesn't sound like the food per say it just sounds like you have uncontrolled IC. I would go back to my Uro or another Uro and demand they suggest another method to control my IC flares whether it be instills or medication or physical therapy or all. I would also address with them the chemical sensitivity as that may need its own treatment outside of IC.

Have you tried taking Prelief before you eat? That could help. Also if you are actively flaring you could take some even without eating to see if it helps. Also have you tried Tums? They say those help flares as well. Are you able to have baking soda in a glass of water? That can soothe the bladder as well.

Best of luck. I hope you feel better soon.

[earthlady]

It sounds like you are saying that a lot or all of the foods listed on the 'not good' list don't bother your bladder and want to know that if you eat them anyway will they eventually harm your bladder or take you out of remission. That's a good question but I'm not sure if anyone really knows the answer. I've had one dr. tell me he did not feel it would harm the bladder if you are not getting any sensitivity or pain from the food and another dr. commented he felt it was a possibility it could do further harm. Like I said- I don't think anyone really knows the answer but it is probably a good idea once you've been diagnosed to at least follow a low acid diet. Just my opinion though.

[Jadia]

I have IC and started with the diet months ago, but kept elininating with pain reactions and eventually now everything is off limits. i cut out all supplements over a month ago, and am on some meds and doing instills once a week with sod bicarb, heparin, and lido and no change. I am taking demerol and ativan and am getting nausea and weaker. I have lost 40 lbs and cannot see how to keep myself eating. has anyone out there been through anything like this? I have chemical sensitivities too. Please help!

Jet, you may need a more serious set of treatments to control your IC beyond just medications and instills. Medications did not help me and I can't do instills due to the catheter so I had to move to nerve blocks to find relief and pain killers for any bleed through flares. For the nausea from your pain relievers, you should ask your doctor to try different ones to see if you can find one that does not cause you the nausea. If they all do (like they do for me) as for phenergan and take one about 20 minutes before you take the pain killers to help the nausea/vomiting
.

[JET3539]

Jadia

Thank you Jadia, is this something you have been through....my uro- gyno is not very flexible and I go to a separate pain management dr who doesn't herself do blocks, so that would have to be set up with an anesthesiologist. What do you mean you couldn't do instils cause of the catheter? may ask how old you are, I am 52 and had menopause 5 years ago. I have also not put myself through another cysto, I did it 20 years ago when forst diagnosed. They only do flexible ones here in my dr office with no meds I am terrified. I don't live in a big city, I am single and live alone, and this is so overwhelming. Here I find conventional medicine doesn't really understand chemical sensitivies, where do you live? Thank you for your help.

[Jadia]

Doing rescue instills requires use of a catheter. I have symptoms that extend into my Urethra so trying to use a catheter on me is a lot like trying to insert a hot poker up there.

I have never been to a combination Uro/Gyno before. I have a Urologist, OBGYN, Rheumatologist, and pain management specialist all as separate doctors who I go between. I keep the lines of communication open between them, including exchanges of medical records and permitted phone calls, so that they can work as a team for my care.

I am pretty surprised to hear your pain specialist doesn't do blocks. All of the ones I have talked to in my city do them and are able to do several different ones. They mainly use the block on back pain patients, but a knowledgeable enough pain specialist should be able to offer various kinds of blocks to treat various kinds of pain. Perhaps your pain specialist just has not done the research about using nerve blocks to treat IC but still does them for back pain patients. I had to switch from one pain clinic to another after finding out my first one was not in network on my insurance. My original doctor knew of the IC treatment and introduced me to it when the pain killers and I could not get along. When I went to the new doctor I asked him and he said he had never heard of doing them for IC but was familiar with caudal nerve blocks for other pain. He did some research and it took 1 unsuccessful block before he got the technique right and the second block worked. then we just had to adjust the levels of the medications he was using. He has 2 other IC patients he then offered the caudal blocks to. They worked well for one but not for the other. So perhaps your doctor just needs to do some research into the treatment...but if they do not do nerve blocks at all, I personally would be seeking a new doctor since that is the treatment that works for me. If the pain doctor is controlling your pain with other methods then that is great! But if your pain specialist is not controlling your pain and says they can't do anything else, it may be time to look to another.

I live in a county outside of a small town (roughly 29,000 population), sort of out in the country in the Southeast US. So I drive 20 minutes to the nearest larger city to go to my doctors. The population there is roughly 190,000 people according to the census and I actually moved from there, to here, just before my symptoms started. ahhh timing! I am 34 years old and pregnant with my first child. For me, relief for my symptoms is well worth any drive and for a good enough doctor I would even be willing to fly when I could. But I also have symptoms that are beyond control through diet and medication and it's like a 24/7 flare that never ends if I am not receiving caudal blocks. If I could just use medication and diet, that would certainly be my first choice! But they just don't work enough alone for my symptoms.

[JET3539]

Jadia

Thank you for sharing all your info. You sound like a strong and persistant woman. I know there are pain specialists here that do nerve blocks, but at first when I tried some it seemed impossible to get in. Did you have a cystoscopy at one time, and did you have it under a general, or in office procedure. I had one 20 years ago and am reluctant to go through it again, but everyone says I should have another. So much of the time I can;t believe that this situation has become so severe. Did you find yourself just afraid to eat and of food ever? I have major anxiety and it seems to snowball so easily. I am taking some drugs for it, but feel so lethargic and depressed from them. Maybe nerrve blocks are what I need. You don't mention chemical sensitivities, I assume that is not a problem for you, hope not, as you have enough on your plate with being pregnant and having a baby soon, bless you my dear and I hope you have a lot of support. Thanks for writing.

[Jadia]

I am not really sure what people mean by chemical sensitivity to be honest. I have not been tested for allergies so if it is a form of allergy to chemicals I have no idea. If it's just getting side effects from medications I have a heck of a time with nausea from anything that affects the brain in any way, pain killers, anti depressants, anti-anxiety etc. If it's an IC reaction to chemicals I am not entirely sure. I already use no dye, no scent, hypoallergenic fabric soaps on my clothes and no softeners just as habit from my mother who is very sensitive to a lot of things!

To be honest, it can take a long time to get into a pain clinic here as well. My first doctor I had to wait 3 months to see. The way I looked at it though was if it didn't work..I would have been in pain those three months anyway..and if it did work then 3 months was nothing. I was of course under the care of my urologist while I waited, but there was little he was doing for me for pain control. When I switched though, my second pain specialist got to me much quicker given I was transferring from another pain clinic.

I have had a cystoscopy but it was done with me under general anesthesia. My urologist opted to run several tests at once when he planned a distension that would require the general anesthesia anyway. Due to how sensitive my urethra is, we waited to do the scope until then.

I definitely went through the scared to eat or drink anything. I lost a ton of weight to the point my extended family was asking if I was sick...I just looked awful. I definitely encourage you to look into all your options and to be willing to try them until you find something that works for you. Sometimes it's even a combination of things! (Like I use diet, medication and nerve blocks) Just don't give up until you find a treatment that helps you live with your symptoms. It can take a lot of trial and error, but in the end when you get relief, it is all worth it!

Definitely browse all the forums here and research the techniques mentioned in them. There is one here for Nerve blocks and many other types of treatments.

Thank you for the encouragement, some days I feel like I need extra! today and tonight has been one of those.

[JET3539]

Jadia

The chemical sensitivites are allergies, to perfumes, cleaning product, exhaust fumes nail polish etc etc. It is believed to be an over toxicity inthe body. I had it for many years and recovered for about 8 years, and now it is back with IC too. Most doctors in the east are not too famililar with it, and some just don't believe it. I believe it is why I don't tolerate meds too well either.
My urologist here, I don't really care for, but don't know if there is really anyone else here any better. I am having a lot more ibs symptoms now and always in the past used natural products, but I am not tolerant of them now. I can't even take any supplements, they seem to all bother my bladder. Do you take any? I read about the nerve blocks, looks like it is kind of tricky....are you in some pain all the time? When is your baby due? Thanks for all the support.