I can't find my triggers

[born2swim]

I know coffee/tea are terrible, but I can't figure out why I feel like crap every single day. I want to try and fast for 2 days to see if that would clear the system (of course still drinking water).

Besides that... the only other thought I had was dairy. I drink milk every day... does that give people trouble? Maybe I should cut that out for a while?

This is so hard! I eat close to nothing and yet I still have trouble! Please make this stop! I have not had vegetables in so long... because the way I like to eat them are of limits. Should I just accept that I will suffer for the rest of my life? I wouldn't be so upset except for the fact that I follow this terrible diet without any help from it. Why doesn't it help me? I feel like I could cry. I keep wondering if remission is real...

I'm sorry to be such a downer today... I guess I needed to vent...

[windwalker]

Hi, Dont worry about venting, we all need that once in a while . Sometimes it's real hard to find triggers, it could be a food additive instead of just the food. I don't have a dairy problem, but I bet there are ppl here that do have problems w/milk so dont feel alone. Have you tried to keep a journal of everything you eat to see if theres any connection? Read the ingredients too, if theres msg, that could be a problem. There are other things that could be causing it too, but off the top of my head, msg is the one I think of. I hope you find some relief. Hang in there

[ABliske]

I personally keep on the diet and I still hurt every day. I have to take pain killers. I agree coffee and soda are bad. I noticed that tomatoes are a trigger, but it took maybe 2 months of me being on the diet and trying them to realize it. I've also had a bean and cheese burrito that brought on my worst symptoms, but I really don't think I have a problem with dairy in general.
Sorry you are finding this so difficult! I wish you the best of luck. If you do decide to fast let me know the results. It would be very interesting.

[born2swim]

The reason I ask about fasting is because I need to get some bloodwork done tomorrow and my appointment is at 2pm. I have to fast all morning for that... and I figured, what if I just fasted the rest of the night? If that felt ok, then if I fasted the next day, how would I fare. I dont' think fasting is in any way healthy, but 2 days wouldn't kill me (I don't have glucose problems). I think I might try it (if I can control the hunger that is! LOL!).

[ICNDonna]

It could possibly be that milk is a problem for you. You might try a day or two without it to see.


Donna

[shell]

Instead of fasting have you considered an elimination-type diet initially? There's information on the IC Association web site at http://www.ichelp.org/TreatmentAndSe...ICAndDiet.html that discusses this. I used a version of this to help get my sypmtoms to a manageable point and then slowly added back in other foods, which really helped pinpoint the triggers.

[kari1980]

I'm right there with you Alyssa! I've been doing the diet since february and I'm still in pain every day and still taking pain medication. I'm barely eating anything, everything is bland and I still can't figure out what it is either. It's driving me crazy. If you can do the fast for the day, I would and see if the next day you notice that you are feeling better. If so then you could probably assume it is something your eating or drinking and just don't know it. It's hard to do though. Good luck to you too.....

Kari

[BrittanysDance]

some triggers you might not think of that can flare you:

red and orange food dyes: like kool aid, crystal lite, gatorades, cheeses also have dyes in them (cheddar, american, port, etc).

artificial sweetners: I can only use sweet n low or regular sugar, and some splenda but only in like puddings or jello, not to use in baking or coffee (meaning the splenda). I can use sweet n low in my coffee but am limited to 2 cups of coffee a day and am one of the lucky ones that can drink coffee, but I cannot drink tea, it aggrevates my bladder.

Tomatoes are a biggie: Try going for low acid ones (the yellow or light red ones). They are less acidic and can be tolerated by some ICer's.

MSG is a HUGE trigger for many - ( I cant tolerate it at all - it sends me into migraines something awful ). So does peanut butter and onions for other ICer's.

Water - what type of water are you drinking? I can only drink Deer Park water. Any other water aggrevates my bladder and my IBS.

Milk can irritate IBS if you have it, causing it to irritate your bladder. So while you think its your bladder, its actually your intestines that are cramping, and it sets off a cycle of pain.

STAY REGULAR - keep your stools soft if you have IBS-C (constipating) or if you tend to get constipated easily, eat lots of fiber because constipation can wreak havoc on your bladder and cause it to constantly contract and be irritated since intestines are right there.

I'm sure others will add to the list of triggers they have. These are just some of mine.

I hope you feel better soon and can figure out what is causing you to continually flare. Sometimes it just doesnt go away - try taking Urised or Uristat (over the counter) or prescription meds that can help coat the bladder that are a bit stronger along the lines of Urised.

Brittany

[ABliske]

Yeah, the hunger will creap up on you! ha ha I personally think fasting can have health benefits, but I just can't do it. I like my tummy full.
I have gone periods without eating for procedures and just because I got super busy. I do have less symptoms at those times!!! It just can't do it all the time - obviously I need to eat. I think I have reactions to every food pretty much. The diet much too limited to satisfy me. So, I eat the "might be okay to try" foods and just hope my bladder will get better over time. Or more research will be done on IC!!!

[born2swim]

Instead of fasting have you considered an elimination-type diet initially? There's information on the IC Association web site at http://www.ichelp.org/TreatmentAndSe...ICAndDiet.html that discusses this. I used a version of this to help get my sypmtoms to a manageable point and then slowly added back in other foods, which really helped pinpoint the triggers.

Here's the thing... I have been on the elimination diet for 3 months now. It hasn't helped me at all. They said people generally start to feel better and can add things when their symptoms improve. I haven't had any improvement. I did try coffee (4oz) one day and that was a resounding now (as well as 2oz of tea sampler from a store). Other than that, I have stuck to this diet. I'm so tired of plain oatmeal, milk, and bread. I am now B12 deficient due to being mostly a vegetarian and not being able to take a multi-vitamin. I am on injections for that now. I did add a protein shake (that is free from everything artificial and made with vanilla). I just don't know what to do... nothing seems to help me and so many people can isolate their triggers. I have tried different types of water (Evian, Fiji, Zephyrhills, Dannon, Tap, Brita, Pur, etc). I am feeling so lost right now. I wish I had control over my symptoms and preventing feeling so miserible.

[born2swim]

It could possibly be that milk is a problem for you. You might try a day or two without it to see.


Donna

Oh Donna... when I read today "What are your worst food triggers" and one person said milk... I thought I was going to throw up. Milk (skim milk) is my favorite thing on this plant. I'd take it over chocolate, coffee, you name it. I guess I should go lactose free for a couple of days and see...

Tear my heart out!

[born2swim]

some triggers you might not think of that can flare you:

red and orange food dyes: like kool aid, crystal lite, gatorades, cheeses also have dyes in them (cheddar, american, port, etc).

artificial sweetners: I can only use sweet n low or regular sugar, and some splenda but only in like puddings or jello, not to use in baking or coffee (meaning the splenda). I can use sweet n low in my coffee but am limited to 2 cups of coffee a day and am one of the lucky ones that can drink coffee, but I cannot drink tea, it aggrevates my bladder.

Tomatoes are a biggie: Try going for low acid ones (the yellow or light red ones). They are less acidic and can be tolerated by some ICer's.

MSG is a HUGE trigger for many - ( I cant tolerate it at all - it sends me into migraines something awful ). So does peanut butter and onions for other ICer's.

Water - what type of water are you drinking? I can only drink Deer Park water. Any other water aggrevates my bladder and my IBS.

Milk can irritate IBS if you have it, causing it to irritate your bladder. So while you think its your bladder, its actually your intestines that are cramping, and it sets off a cycle of pain.

STAY REGULAR - keep your stools soft if you have IBS-C (constipating) or if you tend to get constipated easily, eat lots of fiber because constipation can wreak havoc on your bladder and cause it to constantly contract and be irritated since intestines are right there.

I'm sure others will add to the list of triggers they have. These are just some of mine.

I hope you feel better soon and can figure out what is causing you to continually flare. Sometimes it just doesnt go away - try taking Urised or Uristat (over the counter) or prescription meds that can help coat the bladder that are a bit stronger along the lines of Urised.

Brittany

Brittany,

I feel like I could just cry. I avoid all those things you said. I am pretty much eating plain oatmeal, milk, and bread. I did get a protein shake (vanilla) that is free from everything artificial. I have played with my water: Evian, Brita, Pur, tap, Zephyrhills, Dannon... no change that I could tell. I do feel better when I don't eat or drink anything... so I feel like I should just stop eating. I know 2 days without food wouldn't kill me... but 2 days without water is bad.

I have tried Urised, Urelle, Urispaz, Phyridium, Azo... and none helped... and acutally they made my frequency worse because they acted as a bit of a diuretic and the urine volume went up and I was peeing my brains out. I seem to have the hardest time with urine volume. I can't hold much (150cc's and I'm ready to start crying because the urge is so strong).

Oh, the IBS bit. I am fortunate that I don't have IBS. I am good and regular (and soft not to give too much info). I have trouble with my bowels with my period (terrible diarrhea), but other than that, normal BM's. I've never had any indication of lactose intolerance (never a stomach ache, GI upset, or gas). I just can't imagine that giving me trouble...

I just don't understand why nothing is helping...

[BrittanysDance]

Born..

have you tried taking a benedryl? Sometimes it helps calm the bladder down....

(((((((((((you)))))))))) I know this can be frustrating but please hang in there and PLEASE DO NOT STOP EATING - oh my goodness please dont stop eating, that will be the worst thing you can do for your body especially if you are already deficient in your B's. Perhaps you are protein sensitive - ever thought of that?

Try taking a benedryl, know you're on Atarax but - see if a benedryl helps. Same family, yes...but...sometimes benedryl works completely different. It can help with the flare too. Have you ever been cultured via broth culture for specific bacterias? Also do you remember if you have fissures in your bladder when you had your hydro (if you had one done to be diagnosed)?

It could be that your bladder is just very very angry and has some "cuts" in it - making it so ANYTHING you put in your body that will eliminate through the kidneys will just make it that much worse. When is the last time you were scoped by your uro who took a REALLY good look in there via a hydro or just doing a cysto just to peek w/out the hydro?

I have a very tiny bladder too - only around 225 ml so I know where you're coming from on that. My bladder was angry like yours when I was first diagnosed many years ago and I dropped down to 92 pounds - was scary skinny and hospitalized due to not eating because of my bladder. Which is why I say please do NOT stop eating. Your doctors should be able to find out what is going on - keep a diary of everything you eat and what happens as soon as you eat it / drink it and how long after you do. Then bring it to your doctor. They should be able to help you with it.

Also, if you can tolerate it - try mixing like 1/4 tsp of baking soda in some water and drink it (ONLY if you dont have high blood pressure due to the sodium content) - better yet, if you can, try instilling it into your bladder if you know how. Theres another idea -have you asked your uro to do marcaine/lidocaine instills to help numb your bladder? Sometimes that helps with the burning and can be great relief. He needs to check and see if your bladder wall & lining are intact and not damaged or thinned out or leaking as that can cause alot of pain.

See - there are MANY things you can do or that it can be other than foods - its up to you to make sure your urologist is doing his / her job to make sure you are pain free and better, or at least at a tolerable level.

I'm sure others will chime in whereas I've left things out, as I know I've left many things out - my brain isnt all there yet this morning.

I you feel better soon and get some answers. Dont give up yet....you WILL feel better, just be proactive in your treatment - but dont stop eating - it may not be food that is triggering you, it may actually be your bladder.

Hugs,
Brittany

[Allies40]

Me too!

I'm sorry to hear you are having so much trouble. I am too! It seems like I'm in pain everyday, and certain foods just make it worse! I'm trying to stick with certain foods for breakfast, lunch and dinner, yet nothing seems to help or make it better. I do know for me now, I am bad in the morning, better in the afternoon, and so-so in the evening. This is so hard for us right now, I'm with you too! I hope both of us start feeling better soon!

[ABliske]

Isn't this the worst? I have really bad mornings too. I take an MS Contin as soon as I am up, but it still hasn't kicked in yet. The afternoons are fine on it. In the evenings though, it's wearing off and if I take another I can't sleep. I got up at 3:00a.m. the other day and tried to lay back down at 6:00 to get some sleep before work.
I am grateful that the MS Contin is working, but will I get immuned?