Interstitial Cystitis: Treatments

[laurajeanne]

Allie,

I don't have nearly the info that Patti does as I just developed this condition, but what helped me with the caffeine withdrawl headaches was to drink LOTS of water.  It's the only thing that kicked them besides Advil  .

Laura

[teresab4]

Wow, if your headaches are that bad, you must have really been drinking alot of coffee!  And if that is the case, you are going to be amazed at how much better you feel now that you are off.

The Elmiron diet mentions that some tomatoes and even little a red wine are OK - In my experience, I have felt much better if I just stay away from those items completely.  Also check out Boar's Head deli items - no preservatives.

I came across this article about a Dr in Arizona.

http://uanews.org/node/20755

[mykidsmom]

Hi Allie,

Staying away from caffeine will be a huge help for you.  I do drink coffee but only decaf.  Always.  Each person is a little different.  The foods that aggravate me may be fine for you and vice versa.  You need to really listen to your body during this time of figuring things out and take note if you have pain/pressure, whatever, what have you eaten that day?  You will find that it will always be something you ate that was white or very acidic.  I will tell you that drinking TONS of water makes my symptoms so much better.  Water is detoxifying and really helps.  I probably drink 10-12 glasses of water a day on average. 

I have taken aloe vera juice off and on and I'm going to start taking it more daily because from what I've read it's a very good mucilage (meaning it heals mucosal linings) which is what IC'ers need.  Marshmellow root tea is also very soothing and healing to the bladder. 

I think the key thing to remember when you are starting the healing process is that auto immune diseases are caused by a toxic body.  So start your cleansing slowly and gently because detoxing too fast will send you into so much pain.  But work through the pain however you have to (I have to use ultram) and keep feeding your body healthy.  You will heal.  Once you've reached a certain healing point (you'll know when you get there), you will be able to do more intense detoxing.  That's what I'm doing right now and it makes me feel much better. 

Most of what I've read says a person can heal themselves in two years if they are very faithful to eating right and taking healing things.  I've had a HUGE amount of stress this past 4 yrs which I do believe has slowed down my progress but certainly not stopped it.  So, it's taking me longer but I don't think it would have if I hadn't extraordinary circumstances going on in life. 

One more thing, I am taking a homeopathic pellet (5 of them) called Staphysagria.  I think that stuff is a miracle worker.  I require much higher doses then can be purchased on the internet but you can buy 30C strength on the internet for $5-$6.  You might try taking it daily or every other day to help with your healing.  I am amazed at how well it works. 

Hang in there.  Don't forget to pray.  I constantly ask God if he'll heal me outright.  But if he chooses not to, to please give me the wisdom I need to treat my body in the way it needs to be so that I will heal from this. 

God bless,

patti

[amlucy]

Hey ladies! Thanks BIG time for all the advice.

Yeah, the weird part about all of these caffeine headaches is that if I drank coffee, it was one cup in the morning. Could it be from detoxing from green tea?

My dh and I are praying over some more supplements and teas to purchase to help me out. It's a big change for me, but I know by the Good Lord's grace, I'll make it through.

Thanks for all of the support. God bless you all!

Allie

[teresab4]

Yes, green tea has caffeine in it too.

I was just looking around today and found a site for marshmallow teas www.ic-hope.com

Peppermint tea is great, and chamomile.  I also saw today that arginine is good for helping to heal IC.  That is interesting to see, because I have been drinking Advocare Rehydrate and taking Advocare Nighttime Recovery - both have arginine in them.

The Rehydrate is refreshing and helps to flush out toxins, and the Nighttime Recovery helps me to sleep better so I don't get up 20 times in the night to pee.

By the way, I have become an Advocare distributor so that I can buy these products at a discount.  You can find out more at www.GetAdvocareOnline.com.

[mykidsmom]

Arginine is an interesting thing.  I was unable to take it when I was first diagnosed because it caused by bladder to go into horrendous spasms of pain.  But now that I've be detoxing for 5yrs and am really healing, I find I can take it in small doses without too much trouble.  Listen to your body if you take this.  It probably depends how bad a person's IC is if they can take this right at the beginning of their healing regimen. 

I started the glucosamine today so we'll see what happens.  I'm hoping for good things!  Like no more pain pills by the end of this week!     I'm taking 1500mg a day.  Is that enough?

patti

[teresab4]

I am anxious to hear how you do with the glucosamine.

I just checked my bottle to see, I am taking 1500mg a day, too.  I noticed that other ingredients listed on my bottle are MSM 100mg and gotu kola extract 100 mg also white willow extract 30 mg.

What have you been doing to detox?

Keep us posted on your progress!

[mykidsmom]

I am anxious to hear how you do with the glucosamine.

I just checked my bottle to see, I am taking 1500mg a day, too.  I noticed that other ingredients listed on my bottle are MSM 100mg and gotu kola extract 100 mg also white willow extract 30 mg.

What have you been doing to detox?

Keep us posted on your progress!

I bought the glucosamine with MSM in it because the sulfur is also excellent for healing the bladder lining.  I also didn't like all the additives I saw in the plain glucosamine brands.  We'll see how it goes after a month of this.

I started out cleansing using Bieler's Broth.  It's a gentle cleanse that didn't cause me pain.  As time has gone on and I've gotten better I've done juice fasts.  Periods of time where I only eat fruits and veggies (for like two weeks at time).  I just finished the Colonix Cleanse and it went very well.  I felt great on it!  I'm actually still finishing that one up.  I've got a week or so left of the two month cleanse.  Doing t-tapp was like a cleanse for me because it really worked on my lymphs!  I can't even remember all of the cleanses I've done.  I've done periods of marshmellow root tea and other mucilage herbs as teas.  I've been at this for 5yrs so some stuff I did is really old by now and hard to remember. 

I'm meticulous with my diet.  I actually think losing 20lbs will do some healing also.  I'm lifting weights (doing the lifting portion of body for life).  I also bought the carb addicts book so we'll see how that goes. 

If I think of other stuff I did I'll post it for you.  Mainly, I do one cleanse at a time and I make sure that when one ends I start another right on its tail. 

patti

[laurajeanne]

Has anyone here had any experience with quercitin?  I read about it on the IC website forum and bought some along with glucosamine and MSM.  Apparently, it's supposed to help with the histamines which lead to bladder irritation.  Unfortunately, the quercitin I bought also contains vitamin C, which I read can be an irritant (my bad for not reading the ingredients carefully!).  Anyway, has anyone had success with it?

Laura

[mykidsmom]

Has anyone here had any experience with quercitin?  I read about it on the IC website forum and bought some along with glucosamine and MSM.  Apparently, it's supposed to help with the histamines which lead to bladder irritation.  Unfortunately, the quercitin I bought also contains vitamin C, which I read can be an irritant (my bad for not reading the ingredients carefully!).  Anyway, has anyone had success with it?

Laura

Laura,

I tried a supplement from Alganot that had quercitin in it and while it didn't help my pain per se, I do think it contributed to my overall healing.  I took it for about a year. 

The thing with a lot of supplements and treatments you'll try for IC is they may not give you any improvement in terms of pain, but they may contribute to your overall healing.  For example, I used marshmellow root tea to help heal the lining of my bladder.  It did not give me any immediate benefit in terms of pain control.  But I do believe that it's part of the reason I'm where I'm at today in terms of long term healing.  Does that make sense? 

As for the vit. c.  When I started out I couldn't take or eat anything with high amounts of vit. c.  Now I can.  Which just proves to me my body is healing.  So I would not worry about taking it so long as is doesn't cause you pain.  If it does, then stop.  And maybe sometime in the future you can take it.  While some sites may say not to use Vit. C or eat tomatoes, etc.  I really believe that only applies if they give you discomfort.  While some people can't eat those things, others can.  So I'd say listen to your body.  It will tell you if you can't take it.

hth

patti

[laurajeanne]

Thanks for the reply, Patti.  I tried the Azo during this most recent flare-up and it helped, so I'm moving ahead with the assumption that I have IC.  I guess the frustrating part is not knowing if something like quercitin is doing any good or not.  My sister had IC and took Elmiron and some type of painkiller and says she's fine now, so I'm tempted to go the "medical" route, but I really want to try to heal naturally.  It seems that stress is a big trigger for me, and wine is an absolute no-no.  Other than that, I'm trying to hunt down the culprits.  I suppose a life of nothing but pears and water isn't so bad (can you tell that I'm slightly bitter?)


Laura

[teresab4]

I posted some things earlier in this thread that have helped me.  Most effective for me was the Joint Promotion that has glucosamine, MSM, gotu kola and white willow extract all in one capsule.

I also stick pretty close to the IC diet and really stay away from trigger foods.

Probiotics have helped too.

Full disclosure here, I take Advocare products and I they have worked so well that I have become an Advocare distributor and get them at a discount.

[mykidsmom]

Thanks for the reply, Patti.  I tried the Azo during this most recent flare-up and it helped, so I'm moving ahead with the assumption that I have IC.  I guess the frustrating part is not knowing if something like quercitin is doing any good or not.  My sister had IC and took Elmiron and some type of painkiller and says she's fine now, so I'm tempted to go the "medical" route, but I really want to try to heal naturally.  It seems that stress is a big trigger for me, and wine is an absolute no-no.  Other than that, I'm trying to hunt down the culprits.  I suppose a life of nothing but pears and water isn't so bad (can you tell that I'm slightly bitter?)


Laura

Laura,

I guess in some respects you could say I'm taking the "medical" route.  I have to take a pain killer to deal with the pressure at night or I am up all night in pain.  The way I know I'm healing is I used to have to take the pain killer at 4:00pm and then again at 11:00pm ish.  Now, I can go until almost midnight and not take anything.  So I know I'm healing just from that.  So my approach has been to do what I HAVE to do to deal with the pain, but then do everything I can do naturally to heal my body.  I refused all things medical except for the ultram/tramadol because I have to be able to sleep and function in my family. 

Truthfully, 5yrs after starting this journey, the only stuff I can't eat is anything white - which no one should be eating.  So, don't feel too bad.  You'll get back to eating tomatoes, oranges, etc. (if those bother you right now). 

god bless,

patti

[laurajeanne]

Thanks for the encouragement!  Anything tomato seems to be a problem - it helps to know that it won't necessarily last forever.   

[mykidsmom]

Allie,

I just now saw this.  Sorry.  It seems like you're doing what you should be right now.  And, your doctor is right.  Just keep on doing the diet and detoxing and in time you will heal.  Cheating will delay healing (trust me on that one!).

I wanted to let you all who have IC know that I am drying some cornsilk for use in making cornsilk tea right now.  Our garden corn is coming in right now.  If anyone is interested in some fresh dried cornsilk let me know and I'll vacuum pack it for you and send it to you for 1.00 (for shipping and vacuum bag cost). 

Cornsilk is a bladder tonic and highly recommended for the healing of the bladder. 

patti

[teresab4]

How is it going with the glucosamine?

[mykidsmom]

How is it going with the glucosamine?

Hi Teresa,

The glucosamine has been very hard on my bladder.  I have cut it back to 500mg. to see if I can handle that.  My bladder is extremely sensitive so this didn't surprise me.  Although it disappionted me! 

We'll see how I do on the lower dose.  The cornsilk will be helpful.  My bladder seems to respond well to herbal teas. 

thanks for asing......

patti

[nousername]

 :-*I can't believe that I found this website with this thread! YAY! Do you know how wierd that I feel about this whole bladder issue?? Yea probably. I am hear to hopefully pick up on some great ideas for bladder health.

[YoopreMama]

I can't believe that I found this website with this thread! YAY! Do you know how weird that I feel about this whole bladder issue?? Yea probably. I am hear to hopefully pick up on some great ideas for bladder health.

Welcome!    There is a wealth of info here (on many topics you would not believe!)  , and a treasury of women w/ wisdom and experience and abundant grace and kindness. 

This is the board for Kidney and Urinary Health w/ other pertinent discussion, in case you have related ?s:
http://www.welltellme.com/discuss/index.php/board,127.0.html

[1bolinha]

My symptoms seem to get worse when I lay on my side at night. Does this happen for anyone else?

[laurajeanne]

I just read on the back of my echinacea bottle that I shouldn't take it if I have an autoimmune disorder.  Since IC is considered by many to be an autoimmune issue, should I stop taking it?  Does anyone know why echinacea would be a problem? 

Laura

[YoopreMama]

Echinacea boosts the immune system.  From my limited knowledge of autoimmune disorders, wouldn't that make your body attack itself better?

[Mrs. B]

I just read on the back of my echinacea bottle that I shouldn't take it if I have an autoimmune disorder.  Since IC is considered by many to be an autoimmune issue, should I stop taking it?  Does anyone know why echinacea would be a problem? 

Laura

This seems to be based on the assumptions that echinacea shouldn't be used regularly, long-term.  There has been debate over this issue, and it seems some research supports the daily use of echinacea with auto-immune disorders....

http://medherb.com/92ECHAUT.HTMhttp://www.naturopathydigest.com/archives/2007/dec/bone.php

Traditional views hold that it should not be used as a daily supplement, and auto-immune issues tend to be those of a chronic nature.   Many feel that the power of this herb is best seen with acute disorders, or if used regularly the  effects may be decreased as the body becomes accustomed to it, building up a kind of tolerance.

If you feel you are getting relief by using it daily I would probably continue, but if there was another acute process, like you became sick with a cold, I would have plan of attack using other remedies apart from echinacea.

[YoopreMama]

http://www.drweil.com/drw/u/id/QAA221677

[mykidsmom]

Echinacea boosts the immune system.  From my limited knowledge of autoimmune disorders, wouldn't that make your body attack itself better?

This is conventional widsom but it is incorrect.  While most MD's treat autoimmunity with immune suppressors my experience has been it is my malfunctioning immune system that needs boosting - not depleting to fix the problem.  As such, with my IC I have done many cleanses (starting out light and getting stronger), used Vit. C in large doses (usually a no no for IC sufferers), and in general take and do things that boost my immune system.  In the beginning, immune boosters caused me trouble and I had to back off until my body was more thoroughly cleansed.  Five years later, I am still taking and doing things to continually boost my immune system.  Since autoimmune diseases are typically the result of a toxic body, I do not believe it's boosting the immune system that makes it worse.  I believe it's the toxicity of the liver/kidneys/lymphs that make things worse when someone takes or uses an immune booster.  That immune booster puts toxins out in to the blood which makes symptoms worse until they exit the body.  The moral to the story is, boosting your immune system is the right thing to do when you have IC or any AI.  But doing it in the right order (ie.  cleansing sufficiently first) is the key.

patti

[laurajeanne]

Thanks for all your replies.  I have had to go off of vitamins because they cause an IC flare-up, and echinacea is my only recourse for staying healthy during flu season.  This is why I'm taking it - not for my IC symptoms.  Maybe I'll continue to use it on and off unless/until I have a bad reaction to it.

Laura

[mykidsmom]

Thanks for all your replies.  I have had to go off of vitamins because they cause an IC flare-up, and echinacea is my only recourse for staying healthy during flu season.  This is why I'm taking it - not for my IC symptoms.  Maybe I'll continue to use it on and off unless/until I have a bad reaction to it.

Laura

Laura,

You are doing the right thing.  Since everyone with IC is different, only you know what flairs your symptoms and what doesn't.  You're doing exactly what I did when I first found out I had IC.  Eliminate what causes issues and use what doesn't.  Eventually, you will be able to take vitamins again and eat those things which are aggravating now. 

I just met with my ND yesterday about my IC and one thing I did not know is he said food allergies will greatly increase IC symptoms (I happen to have a number of food allergies).  So if you haven't been tested for those you may want to.  We also found out I'm allergic to latex and that has been our form of BC for 14yrs.  (Did you know if you're allergic to bananas, pineapples and kidney beans it means you have a latex allergy?   ).   He said the latex would also aggravate my symptoms.  So you may want to look at those things also to see if they would apply to you.  I have no symptoms (well, I didn't use to!) of food allergies.  Once I removed what I was allergic to my bladder improved.  But now if I eat those things I itch all over!!  But at least my bladder is getting better! 

Anyways, slow and easy with the cleansing and you will do it.  I've been at it 5yrs but I'm so much better now then I was in the beginning. 

patti

[laurajeanne]

Patti - thanks for the encouragement!   

[1bolinha]

I have experienced symptoms for about 2+ years. I ruled out dietary issues and did a cleanse as well.

For me...it became clear that there was a pattern of sorts and that this pattern was surrounding the fluctuation in my hormones and cycle. One thing I have learned is that no two women are alike in regards to what the causes may be...some say dairy, others say salt, and still others attribute it to specific food allergy. For me, the hormones were/are the trigger. I am in my third month of supplementing with the dreaded progesterone (Pill). Now that I know how well it has cleared my symptoms, I can experiment with a natural progesterone cream in its place.

So for anyone out there who has experiences this horribly painful problem, please consider this as a possible cause. I googled "IC symptoms and hormones" and there is definitely some chatter out there from others who have noticed the same cycle of pain.

Hope this may help others to find an answer if they have tried the other suggestions on this thread.

[mykidsmom]

This is interesting because my symptoms are always worse around my cycle.  I always put it off to the added inflammation at that time.  I've been on bio-identical progesterone cream for 5+ years and don't seem to notice it has helped.  But I wonder if I would be worse if I weren't on it? 

I actually feel like I'm hitting a wall with my healing right now and I'm getting a little frustrated.  My goal is to get off pain pills completely and while I've made great progress, I clearly still have a ways to go.    

Glad to hear the progesterone helped you!  Whatever it takes to heal, that's what one has to do. 

patti