Interstitial Cystitis? - Page 2

[JaneS]

I found that my IC flares with the food chemical salicylate. There is a reason why the 'IC Network Recommended Diet' is low in food chemicals but surprisingly no formal researcher has discovered why. My experience has led me to think it's clearly because the body is not breaking down the food chemicals properly due to nutrient deficiencies.

Try the FAILSAFE diet until detox pathways start working better with supplements: www.plantpoisonsandrottenstuff.com

Epsoms salts baths to provide sulfate for the pst enzyme.

Trandermal magnesium in baths or oil/gel application to quickly get more mag. into your system than oral supps. Magnesium is needed for over 300 enzyme reactions in the body... they won't work if you are low... and the human body is meant to store upwards of 50 grams of it.

Selenium 200 mcg. per day of the methylselenocysteine version.

I suffered for years, and now I only get bladder twinges and minor urgency if I overeat salicylates like lots of high sal foods such as spices, tea, cinnamon and almonds all in one day. Then I eat low sal, up my magnesium and epsom salt baths, and it goes away in 1-2 days.

[KatWrangler]

Jane,

Thank you!

[HappyLoveMama]

Originally Posted by KatWrangler

Right now we are treating this as a UTI. I started bleeding again yesterday afternoon. Very painful too. I called my OB/GYN's office and told them I had been for the pee test (results should be in tomorrow/Monday). She said since I am having bloody urine she would phone in ABX. Which in this case I have to a agree with. She said if I develop a fever or it gets worse go to the ER.

I have take two doses of ABX and it feels a little better. But still irritated down there and my back hurts some. Which makes me wonder if it's a kidney infection and not bladder. But the ABX should work for both I would think.

Now the question is, is this seperate or related to IC. Guess I will have to wait and see.

Glad you are on the road to feeling better! Keep me posted either way. I guess it could be IC related if it's negative for UTI or even related if it's positive. I never had a UTI in my journey of IC but I do think it's a regular thing for IC patients, not sure on that. Did you check out the IC network forums yet? Saying some prayers for you!

[JessicaS]

Originally Posted by KatWrangler

How does Benadryl work with IC? Thats fascinating! I guess I wouldn't suspect to take this.

Antihistimines work BEST for me of anything. The antihistamines I take are much stronger than benadryl (I take Hydroxyzine hcl) but benadryl might help. It is easy to buy over the counter.

They don't work for everyone but IC has different causes.

http://www.ic-network.com/glossary/glossaryhydrox.html

Histamine is one of the substances that are released by mast cells and can cause pain & vasodilation. By blocking histamine release symptoms of IC can be reduced. However, mast cells are not found in bladders of all IC patients.

http://www.ic-network.com/pain/

Antihistamines can play an important role in the treatment of IC discomfort. Antihistamines help reduce histamine induced irritation in the bladder, particularly in patients with a history of allergies. They may also dramatically improve sleep quality and anxiety. When used with opioids, antihistamines apparently help to increase the pain reducing action of the opioid.

[JessicaS]

And like JaneS said, I have also found food chemicals to affect my IC.

[JessicaS]

Originally Posted by KatWrangler

Right now we are treating this as a UTI. I started bleeding again yesterday afternoon. Very painful too. I called my OB/GYN's office and told them I had been for the pee test (results should be in tomorrow/Monday). She said since I am having bloody urine she would phone in ABX. Which in this case I have to a agree with. She said if I develop a fever or it gets worse go to the ER.

I have take two doses of ABX and it feels a little better. But still irritated down there and my back hurts some. Which makes me wonder if it's a kidney infection and not bladder. But the ABX should work for both I would think.

Now the question is, is this seperate or related to IC. Guess I will have to wait and see.

It could be seperate or related. You can still have UTIs and IC. (sucks when that happens!)

I would look for that AZO stuff. It is OTC, it makes one pee funny colors but it is really great for uretha pain. I took it after my cytoscopy (AAAHH!! THE PAIN!!!) and it really helped.

http://www.azoproducts.com/products/azo_standard

.

[fullofgrace]

The AZO is the best thing ever! Well, for me, at least. I looked at it after I tried it and had major relief (though very orange pee lolol) and thought "Where have you been all my life?!!"

Thanks for the anithistimine suggestion! Having another option is so helpful for me. Sometimes the usual items in my 'toolbox' just don't cut it.

[JessicaS]

Originally Posted by fullofgrace

The AZO is the best thing ever! Well, for me, at least. I looked at it after I tried it and had major relief (though very orange pee lolol) and thought "Where have you been all my life?!!"

Thanks for the anithistimine suggestion! Having another option is so helpful for me. Sometimes the usual items in my 'toolbox' just don't cut it.

The annoying thing about IC is that something that worked great for one person is "do not want" for another. One of the commonly used meds made me hallucinate. I did not like that. At all.

[HappyLoveMama]

I just pray to God for you that it's not IC. It's totally manageable but I am glad I flared when I did before I had my son for I benefitted from physical therapy which required lots of time. I like that option over drugs, if it makes a difference. There are a bunch of helpful exercises/stretches you can do if your interested!

[my3peanuts]

Originally Posted by KatWrangler

Are you having the same symptoms I am?

I don't see where you described your symptoms. Is it in another thread?

For me I've been getting on and off symptoms sort of like a UTI but much milder. I get weird twinges sometimes when I pee and then I feel a lot of burning and aching in my lower pelvis. Not burning when I pee just bladder/pelvic burning. Some urgency but nothing major. I went in the first time and had a UA done and it showed and elevation of leukocytes but no bacteria. They gave me abx but I never took them and it went away. Then it happened again this month, same symptoms so I took the strips and again, leukocytes but no bacteria.

I don't know what's going on but when I googled leukocytes and ran across a few message boards for IC and people mentioned finding leukocytes without bacteria and having IC. So... who knows!

[ikesmom]

For me IC symptoms are the same as UTI symptoms..burning, painful bladder when I go pee, urgency without much urine, ect. I went into remission years ago when I became pregnant.

I will say that after dealing with IC for a few years that I kinda panic when I feel any bladder discomfort. I go straight to the abx when I suspect infection because they are hard to get rid of for me/ reoccur once they start.

My period and pms have made it kinda confusing for me since I feel bloated and need to urinate a lot more now. So I try to drink lots of fluids and watch my urine color as a precaution. If I start to feel twinges/pain then I try to eat and drink gently..not too much acid, caffeine, or spicy food.

I did all the dx test and was given Ditrophan which helped, but not 100%. So far I am the only one in the family to go through all of this. My mom, aunts, cousins have all complained about urgency as they get older. Some of them have had prolapse bladder correction. They say it helps for at first , but then the urgency returns again after a few months.

The one thing that I have noticed is red wine is a no-no for me. I actually had to mix a spoon of baking soda in a glass of water the last two times I had red wine. Riesling for me.

[HappyLoveMama]

Originally Posted by ikesmom

For me IC symptoms are the same as UTI symptoms..burning, painful bladder when I go pee, urgency without much urine, ect. I went into remission years ago when I became pregnant.

I will say that after dealing with IC for a few years that I kinda panic when I feel any bladder discomfort. I go straight to the abx when I suspect infection because they are hard to get rid of for me/ reoccur once they start.

My period and pms have made it kinda confusing for me since I feel bloated and need to urinate a lot more now. So I try to drink lots of fluids and watch my urine color as a precaution. If I start to feel twinges/pain then I try to eat and drink gently..not too much acid, caffeine, or spicy food.

I did all the dx test and was given Ditrophan which helped, but not 100%. So far I am the only one in the family to go through all of this. My mom, aunts, cousins have all complained about urgency as they get older. Some of them have had prolapse bladder correction. They say it helps for at first , but then the urgency returns again after a few months.

The one thing that I have noticed is red wine is a no-no for me. I actually had to mix a spoon of baking soda in a glass of water the last two times I had red wine. Riesling for me.

Yes! When I became pregnant with my son, I felt awesome. I never had any IC symptoms and this was the time I was most concerned about. I thought that was so odd. I had a living being pressing on my bladder but no IC? It only now has started to come back in twinges (DS is 3 now). I think not drinking enough water can affect me as well!

[JaneS]

Ok, this is making more and more sense about the constellation of symptoms that could have the thyroid as the cause... Jess, I just sent you a PM right before I came here to post!

Let me back up:
I'm finding that there is a correlation with hypothyroidism and IC.

Apparently thyroid hormone malfunction can cause the bladder lining to "constantly be denuded" due to protein and other cell synthesis being impaired.

This was mentioned in the best book I've read so far in a several month long quest to determine what is going on with my and DS's thyroid:

"Hypothyroidism: Type 2" by Mark Starr, MD:
http://www.21centurymed.com/?page_id=12

I think the reason why this connection is not being discussed is that you CAN have normal thyroid blood tests yet still have a problem with utilization of the hormone within the body's cells. I've had normal blood tests for 15 years, yet tons of symptoms, so doctors have always said it's not my thyroid, it's not my thyroid.... Well, I'm gradually finding it is!

With Type 2 Hypothyroidism, the thyroid gland produces “normal” amounts of hormone, but the cells are unable to utilize the hormone properly. Some experts call this thyroid hormone resistance (which may be regarded as similar to insulin resistance).

Laboratory tests showing inadequate bloodstream levels of thyroid hormone make it easy to diagnose Type 1 hypothyroidism. However, lab tests fail to detect Type 2 hypothyroidism, because despite adequate bloodstream hormone levels, the cells are unable to accept and utilize that hormone (for a variety of reasons...

This would make sense too that selenium helped me as it enables conversion of the storage thyroid hormone, T4, to the active form, T3... a selenium deficiency can cause hypoT because of this. But selenium still hasn't relieved a boatload of other hypoT symptoms I have:

http://www.stopthethyroidmadness.com/long-and-pathetic/
http://thyroid.about.com/cs/basics_s...ochecklist.htm

More comprehensive symptoms are discussed in Starr's book I haven't seen elsewhere such as having a baby over 9lbs and overdue gestation, and mucin accumulation by pinching upper arm:
http://www.detoxpuzzle.com/thyroid.php

Normal skin on upper arm is thin like the first picture of the man, if you have thickened skin, it means mucin, a thick gel like substance, has started accumulating and is ONLY indicative of hypothyroidism when it starts overproducing in certain areas of the body. The upper thigh is another area, the face and eye region and hands and ankles are other common areas as the disease progresses. Mucin can invade other organs in the body and cause digestive and heart and lung and brain symptoms as well.

This is leading me to my DS's allergy and food intolerance and respiratory problems too as his BBT's are low, he has cold intolerance and a number of other frankly hypoT symptoms.

I've also been finding a lot of correlation with fibromyalgia actually being caused by low thyroid function as well, and other classically linked IC symptoms such as IBS and generalized inflammation.

Do you have low thyroid symptoms or a family history of thyroid problems?