Thoughts about the IC diet and the Role it plays in helping the bladder heal.

[leelee88]

How many people think that the IC diet plays an important role in helping the bladder heal, Even if you are not diet sensitive.

I was just wondering this, because some people with IC are not diet sensitive, but yet they still have a diseased bladder. And one would think that by not following the IC diet or at least leaving the bad foods alone like, Coffee, Citris, Tomatoes, Chocolate, Tea, Ect. That in the long run it would cause more damage to the bladder even though it was not causing any pain at the time of consuming it. What is your thoughts on this?

[ICNDonna]

I'm not sure it's actually healing my bladder, but for me it's very important to avoid my diet triggers to avoid pain.

Donna

[leelee88]

I agree Donna, maybe I should have worded it differantly. I know the bladder might not heal but, I was wondering by not following the diet if you keep eating the bad foods if it would eventually make your IC worse? And by taking pain meds that would seem to just cover or mask the problem. So if you take these daily how would you know if you were really diet sensative or not?

[traceann]

Good question Ronda - I can't help but think that regardless of whether the bladder reacts to it negatively, the big aggrivators food-wise must somehow impact it. I know coffee is a aggrivator to even non-IC/compromised bladders as my hubby can drink the stuff til the cows come home and if it's a high-acid brand he feels the effects more so than if he drinks my low-acid variations.....

[karen10]

Ronda -- you have said exactly what I believe! I'm currently enrolled in a program in nutritional therapy and it's focus is all about eating for healthy living. It gets very in depth, as I'm taking a biology and chemistry class to learn how food affects our bodies at a cellular level. Autoimmune conditions deal with some type of inflammation in the body and our bodies attacking our own cells. They think this might be true for IC (definitely inflammation, still unclear about what's breaking down the bladder lining). There's also the leaky gut theory: food intolerances cause a breakdown of the intestinal walls, allowing for larger molecules to pass through which the body then recognizes as foreign and sets up a defense response to. This can activate mast cells and cause inflammation.

Based on what I'm learning and this theory, and IMHO I believe without a doubt that even those that say they aren't diet sensitive, are still continuing to harm their bladders by eating unsafe foods or foods that they don't realize they have an intolerance (allergy) to. My question to those individuals is: are you ever out of pain? The ones that I've talked to say no, or like you said, use meds to mask the pain.

There is a direct correlation to what I eat and the pain I feel. I've mentioned here before that when I stopped eating sugar, my pain went from a 6 or 7 to a 1, and now I'm pain free most days. I don't take any meds.

Great thread idea!!! :)

[leelee88]

Thanks Karen,
I just feel that consuming the bad foods even though they do not cause you pain, will still in the long run hurt a bladder that is already in a fragile state. I Have always believed that your diet plays a part of the way you feel. Now the more research I do I truly believe that our diet plays a very important roll in IC and how it can damage the bladder. I know for a FACT that it effects my Vulvodynia!!

[karen10]

Yup! :) I really hope they do more research on how diet affects the bladder. I think in looking at good health in general it's not been recognized enough, and now years later some of the top health problems in America are linked to diet: diabetes, heart conditions, and lots of cancers (maybe all).

[SandyRN]

And by taking pain meds that would seem to just cover or mask the problem. So if you take these daily how would you know if you were really diet sensative or not?


I can answer this.....First of all, I take pain medicines every day because if I don't I am in agony, bladder wise and body wise. All over, excruciating pain and extreme pain in my bladder. I can tell you first hand that pain meds do not MASK pain that comes from food. I cheated and ate some salsa a few weeks ago, knowing it was bad, but darn it I WANTED some knowing the result. My pain meds did not MASK anything. Oh how I wish that were true. I am subject to flares just like anyone else and pain meds or not, I still feel as intense pain as anyone else. The pain is MAGNIFIED when I'm in a flare, so badly that my pain meds that I take on a daily basis don't touch the pain. I have to take extra meds like pyridium and instills just to function a little bit. I have trouble starting my stream and continuing my stream. So, to answer your question about masking the symptoms I simply do not believe that is true.

If you saw me when I wake up first thing in the morning I am in immense pain and I am reminded in a not so gentle way that I have IC, severe IC, and fibro, etc.

I just don't think that masking is the issue when you take pain meds every day.

As to the rest of the question I don't have the answer to that. I really don't know if foods like coffee, etc, acidic foods actually damage the bladder or just annoy it severely. I wish we did know this for sure. I believe this is one of those mysteries we just don't yet have the answer to, but in my case I can tell you if I cheat with something as acidic as salsa I will pay for it, pain meds or not.

Sandy

[futurehope]

Yes, I've heard of "leaky gut", "food allergies/sensitivities", "overgrowth of yeast". I've been there, done that since the 80's.

Maybe the theories are "onto something", maybe not, but the bottom line is........if your body is not accepting certain foods, there's something wrong with your body, not the food. I'll be the first to admit that if I "cannot eat wheat, milk, chocolate, sugar, eggs, gluten....you name it", there's something wrong with me, not the food. More research needs to be done to correct my faulty body.

We need food to live and we have to be cautious when determining what we will eliminate. Like I've said before on this forum, when I have a sore throat, my inflammed throat reacts to the food or drink, but I ingest them anyway. I'm hungry.

Now, I'm not subscribing to ignoring your food triggers and torturing yourself on purpose. But the bottom line is, THE LINING OF OUR BLADDERS ARE FAULTY. Why? I wish I knew.

The people with severe IC need to be on pain meds so they can eat. Unfortunately, removal of the bladder is not an easy option.

That being said, I'm all for encouraging our food industry to eliminate unnecessary contaminants for the general good of all, and on that note, I buy unprocessed whole foods without additives as much as possible.

[karen10]

Sandy--I of course can't speak for leelee88, but for myself, I never meant to imply that if someone takes pain meds, that for whatever reason, "masking" or not that they aren't needed!!! OMG, of course you need to take them if you're in pain! No one should have to live like that. Pain is so debilitating on every level! Leelee88 and I had spoken another time about how we wondered if every IC bladder is affected by bladder irritant foods even if the person didn't seem to notice it at the time. It's just theories of course! :) I guess it's that need to make some sense of all this for me/us. The masking part came out of this question: do you think that someone who is already on pain meds, might not notice the difference of IC irritant foods because the pain meds manage it (because they need too!!!), but that the food may STILL be doing more damage? Does that make sense? We were just talking about whether some food causes bladder damage in general, pain meds or not.

Futurehope -- there is no doubt that food does play a role in our health. I'm currently enrolled in a Ph.D. program studying nutritional therapy, and I'm absolutely amazed at how food affects us at a cellular level. American diets are highly acidic and for some reason some of us (those with IC) are more prone to this being problematic than others. Now, whether it causes IC (doubtful) or whether it just exacerbates it (more likely) is the question. Also, some of us, for whatever reason--there are many--develop multiple food intolerances and this can cause any number of health conditions, in particular autoimmune disorders, if not managed. Take gluten intolerance or celiac disease. This can be fatal at times but many doctors don't find it for years sometimes. Doctors have not taken diet into account enough, but it's starting to change. We have no idea what all the contaminates, pesticides, steroids, additives do to the human body over time. Again, some people can live a healthy life and never be bothered while others are extremely sensitive to all these things. :)

[Julie B]

Personally, I believe the bladder can heal from IC in some patients. Maybe not 100%, and probably the weakness that caused the IC in the first place will always be there in the bladder, but there can be healing. The healing comes with eating the right foods and avoiding those that bother the bladder; reducing the impact of stress on the body; and giving yourself permission to rest and pamper your whole body.

Great question!

[futurehope]

My 28 yo daughter subscribes to the theory that all the immunizations some of us had at very young ages (infancy) may have triggered faulty immune responses.

I do not know what I think on this subject. Just thought I'd mention it.

[karen10]

Interesting that you mention that because I was just talking to a friend who has a child with autism and she was reading that there's theories on immunizations being responsible for the rapid increase in autism rates!

I just think we have underestimated the role that diet plays in our health in general. I'm hoping they do more research on that in the future! :)

[Sally939]

I for one really want to know this answer. The last thing I want to do is make the problem worse. I worry because I have finally found some things that do not hurt me that would be traditionally be bad for most IC patients. I also have a trick where if I take two benadryl I can have two peices of pizza or one scoop of icecream (dairy flares me). As much as I love that I can have a little of some of my favorates I would not have them if I thought they were making my bladder worse or smaller. I do worry that my IC meds just cover up the pain. That being said I do not think that those who take pain meds can eat whatever they want. I think their meds are the same as ours. They make us more comfertable but when the bladders mad we all know it.

[leelee88]

Thanks Sandy for replying about the pain meds. It helps me understand and others who do not take pain meds daily. I completely understand why you and others have to take them. If you didnt you would not be able to live life as you do. But I am really glad you cleared it all up. Now I know that pain medicines do not mask the pain if you were to eat something that did not agree with you..

This is why I believe this forum is so great! Because we can learn from one another and understand more of what each of us have to deal with. We are all so differant even though we all have the same disease..

Thanks again for sharing your views on this..

[theclownster]

Hi there! I'm not exactly sure how to answer this question...

I am someone who, as a whole, is not very diet sensitive. I do have a few significant triggers yet for the most part do okay on most things (I can even eat tomato based sauce without problems which most cannot do). However, in the beginning I had to be a little more careful. Most of my triggers are drink related - coffee, some teas, some hot cocoa, water (if not the right kind), etc.

I do not take any narcotic type pain medication. For my IC I take Elavil 25mg at bedtime (is this the type of pain med you are referring to?), Atarax 25 mg at bedtime, and Ditropan XL 15mg at bedtime. I also take Seasonique birth control which helps my IC. I also have to drink plenty of IC safe water.

Karen asked this question about pain:
My question to those individuals is: are you ever out of pain?

My answer is yes! I don't want to jinx things, but I live most of my days without pain. I do have flares at times, but live most of my days without pain. I do have increased frequency and urgency at times, but the pain only usually only comes with a bad flare which fortunately I do not have them very often or a confirmed UTI (which doesn't happen too often). Occasionally, I'll experience some slight pain or increased pressure but I guess I'm just used to it. I will also add that it hasn't always been like this. It took me many months to get to a place where I can eat most things (in moderation of course) without a significant increase in symptoms. When I do experience pain it is usually in the lower back (kidney area) and pelvic region. When I get into a bad flare I usually take something like Pyridium Plus or Prosed DS only if I'm miserable. This only really happens maybe once or twice a year where I have to take the Pyridium Plus.

So I'm unsure if the food I eat is continuing to damage my bladder. I'm not sure if there's any way to really answer that question. I guess if I'm damaging my bladder, I'm not immediately aware of it.

I'm not sure if this post makes any sense (sorry, I'm getting tired). I guess I'm just confused about the answer to this question. I hope I haven't confused you anymore.

Jennifer

[tigger_gal]

Originally Posted by leelee88
And by taking pain meds that would seem to just cover or mask the problem. So if you take these daily how would you know if you were really diet sensative or not?


ABSOLUTELY CORRECT. my dr and ic specialist and he dose not want to treat for pain unless it is absolutely necessary. He says he does not like to because it can mask other pains, thus.. foods thats may bother the bladder. Being a pain patient myself with many other medical problems I fully have to agree with everyone. I do take pain meds when I have to, with having 2 small kids, I drag my self thru the day in pain, most days wanting to take something and go to sleep.. naps are not always an option.. ggrrr

[lisabar36]

I have to follow the diet or I will be in more pain and miserable, also my VV, I agree with you Ronda in I have to follow the diet for that also. I think diet is very important for pain control, and also acidity in foods and drinks I think can damage the bladder that is already damaged. I had hunners ulcers when I was diagnosed and the first thing they handed me after surgery was a sheet that talked about the importance of the diet and the diet itself.

[Claredale]

I am not as food sensitive as alot of people with IC. When I was first diagnosed with severe IC and getting everything lined up to have the interstim surgery. I ate only bland foods, and drank water and some mint tea at times. I lived that way for about 2 years while going through other tests and getting my interstim approved by my insurance. After my interstim, my freq/urg and pain were drastically improved. I truly thought I was at a great place in my life again. Now, about 6 years post-implant, I am doing even better. I am living as though I don't even have IC anymore, especially during the day. I am still staying away from my trigger foods, and my triggers in life that could easily return me back to where I was. I am so thankful for my previous doctor and my current doctor. Without them and their dedication to get me better since I wanted my life to be as normal as possible, I am living the life that I enjoy. It took me 20 years to get to where I am, and I thank God everyday. It is almost surreal for me to read my journals from back before I had my implant. Unless I had them to really remind myself of all the steps, treatments, meds, herbal treatments, etc, I probably wouldn't be able to even remember how my life was not long ago. It is even hard for me to explain what it was like to have severe IC and my life was so hard each and every day.

T83

[SandyRN]

ABSOLUTELY CORRECT. my dr and ic specialist and he dose not want to treat for pain unless it is absolutely necessary. He says he does not like to because it can mask other pains, thus.. foods thats may bother the bladder. Being a pain patient myself with many other medical problems I fully have to agree with everyone. I do take pain meds when I have to, with having 2 small kids, I drag my self thru the day in pain, most days wanting to take something and go to sleep.. naps are not always an option.. ggrrr

I just don't belive that. I'm not trying to be snide in any way, just stating what I belive to be true and what is true in my own personal circumstance. I wake up in pain every day, every single day of my life and it's a debilitating pain that I would NEVER be able to function with, ever, not for one minute of any day would I be able to function and be a functioning person with all the roles I have in my daily life. I don't consider taking my pain medicine as masking anything because I KNOW that the pain is there. If there is a NEW pain I FEEL IT. I know if something else goes wrong, if I have a UTI, or a IC flare, or if my fibro is especially bad, I feel it, pain meds or not.

It's NOT like my entire body becomes numb to pain and I'll never feel another stabbing feeling, or ache or pain just because I take pain meds daily. I don't know how to explain it but I am subject to EXTRA pain, flares of the IC and fibro just like EVERYONE else is, and I feel it just as much. The medicine I am on, which is a dosage I have worked UP to, basically barely covers the NORMAL pain I am in, which is to say I barely function as it is. It's probably time for a dose change soon because I am not nearly as comfortable as I should be in my daily life.

I get out of bed near tears every single day. I take my medicine and go lay back down because my body is in agony and I literally can't function until some of the pain is gone.

I don't know how to get my point across. Ok, an example. If I were to have a gall bladder attack you better believe I would feel it!! Just because I take pain medicine doesn't mean I am immune to other types of pain or even immune to the daily pain. I hurt now!!

I'm not trying to stir the pot, but doctor's who argue against pain meds saying they simply mask the pain sound like the cruelest of all doctors. They obviously don't understand pain control, and they most certainly haven't lived in pain or they would understand it.

[waterflow]

The IC diet didn't do much for me at all. With pain meds or not. The only thing that makes the IC worse is chocolate and coffee. Sometimes melons but not all the time.

[dyno]

I agree that it helps to not eat the foods that trigger a reaction. I would be in sad shape if I didn't watch my diet.

[leelee88]

May I please ask we stay on the subject. And just answer the question to the poll. And give opinions based on the question. Me and some friends are doing some research and this poll is very important to our research. I do not want it getting closed because of something that was misunderstood..

[Claredale]

Sandy, I you explained yourself very well. I too had to have pain meds for many years in order to function. I still had pain, but I was able to continue life as best as I could. My doctor was so understanding that I wanted to be the best I could be. I still have those mornings from time to time that I take 1/2 to a whole pain med and crawl back into bed and wait for the pain to subside enough for me to drag myself out of bed. You remember not long ago, that I was asking your advice on long acting pain meds and you were so helpful. Luckily I happen to get on the right combo of meds that did wonders, but I still have the names of the meds written down in my journal just in case I fall back into my old IC routine. My doctor never made me feel that I took pain meds to "mask" my pain. I did whatever it took to avoid any triggers for many years, but that doesn't mean that you will be pain free if you do so and so.

T83

[redmama]

I'm in agreement with Donna. I don't know if the diet is "healing" my bladder, but it certainly makes a difference in the level of pain I feel. I have days when I don't have any pain, or at least a small, manageable level of pain. If I cheat by eating or drinking something on the problematic list, I definitely have a reaction.
I am still finding my trigger foods so there are days that are better than others.

[ICNDonna]

I honestly don't know if trigger foods would cause more damage to my bladder, but I know they could make me feel much worse, which I absolutely do not want. I think probably they could do some harm with continued use.

It sure is a puzzle, isn't it?

Donna

[Claredale]

A puzzle that we can't even have the side pieces to get us started!

[leelee88]

I agree with that Tracey, It would be so nice if we at least had a starting point to the piece of the IC diet puzzle or IC itself.

[Sarojini]

This is the same question as "What came first, the chicken or the egg?" - and you'll get the same answer (an argument).

Unfortunately, until scientists are able to discern the cause of IC, the answer to the diet question is subjective.

Right now, the sexy question in urological research is "Does IC start in the bladder lining and move to the muscles and nerves, or does it start in the nerves and move to the muscles and the lining?"

Some evidence suggests it might be the lining, like the APF studies - but then again, is APF expression one of the causes, or is it a downstream event that occurs in response to something else? Where I work, there is a guy who is a scientific expert on overactive bladder and IC, and he believes, as many are beginning to, that IC starts in the nerves (which is why other nerve type conditions go along with it, like migraines, fibro, etc). He believes that something gets whacked out in the nerves, and this can trigger neurogenic inflammation in organs like the bladder, creating visible signs of IC (inflammation, ulceration of the bladder lining).

Who's right? Who knows.

But - here's where that "diet being subjective" thing comes in. If you are a believer of the "IC starts in the lining" theory, then you are probably going to believe that food, or anything else that causes the composition of urine to change, can make your IC worse.

If, on the other hand, you are a believer in the "IC starts in the nerves" theory, you won't be as convinced, because you'll be thinking that the nerves are probably going to be firing (or mis-firing) along, regardless of what you eat.

However, until we know for sure, it boils down to what Donna said - if particular foods cause pain, don't eat them!

As for pain meds, they are not like anesthesia - you can still feel pain. I'm sure you've noticed that if you stub your toe or smack your head on something after you've taken a Vicodin (or any pain med of your choice), it still hurt like h-e-double hockey sticks. Even if you are on long-term narcotic therapy like Sandy and myself, you can still feel pain if something new happens in your body. Your body is very smart. It knows you have been on pain meds a while, but it also knows that if something goes wrong, it's going to have to tell you. So, it adjusts itself - upregulates some molecules, downregulates others - so that you will still get pain relief, but if a big, different pain comes along, you'll feel it.

[leelee88]

Thanks for your input Jen..You always have a way with explaining things so everyone can understand them..

[Annie2]

I'd like to go back to the original question asked which was: How many people think that the IC diet plays an important role in helping the bladder heal, Even if you are not diet sensitive.

I interpret your question to mean you are asking if, once we have IC and our bladders are damaged (disregarding what MAY have set off the condition or instigated the original damage because we do not at this time know the cause), does consuming known bladder irritants on a regular basis cause healing to be slowed and avoiding those irritants promote healing in the bladder? Am I correct in the interpretation of your original question?

If so, I would have to answer my best guess is that continued and frequent consumption of known bladder irritants can cause increased inflammation, further nerve sensitization and perhaps further stimulate histamine production. That situation couldn't possibly be good for an IC bladder and would very likely cause further damage. By regularly avoiding known bladder irritants and minimizing the effects of consuming such things thereby providing the bladder with a more soothing environment, the bladder is given an environment much more conducive to healing.

[leelee88]

Yes Annie that is EXACTLY what I was trying to say!!!! Thank You!:smile tee

[Claredale]

Yes, Jen, I was hoping you would join this tread. It makes perfect sense! I am so glad you got the job you have!

Thanks for the explaination.

Tracey

[futurehope]

I voted "no effect at all".

I had mild IC for years. I could follow the diet and be okay. I could also eat pretty much anything between flares and be okay.

I now have (comparatively speaking) moderate IC. I followed the diet for 1 year. My pain was decreased, but my bladder never went back to baseline (or mild IC).

In my case, I put myself on supplements and diet to help healing. I am much better than I was 1 year ago on diet only.

Conclusion: In my case, my bladder has a will of it's own, and diet did not bring on the worsened IC nor heal it.

[Laura78]

Right now, I have to say very important b/c some of my worst flares have been correlated w/ food. However, stress has played a big role as well. Since I can't take any meds, due to preg., I'm following the diet pretty strictly. Overall, I do think it helps. For exp., when I tried to drink 7-Up and eat B-6 suckers to combat my morning sickness, the citric acid & B6 put me in a constant flare.

[born2swim]

I have a few things that really aggrivate my bladder (tea, artificial sweeteners, too much of some bad things like tomato/chocolate). I avoid those as much as I can! I don't know if it helps my bladder heal... or if it just reduces inflammation... or just irritates my bladder less.