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Sjogrens Topics => Living With Sjogren's => Topic started by: lori on March 30, 2013, 03:39:19 PM

Title: bladder issues
Post by: lori on March 30, 2013, 03:39:19 PM
howdy ya'll!!

in my quest to find sme help from this urianry nightmare ( IC, Vp) i came across some good info and i just wanted to share

check out low oxalate diet-  has been a life saver for me.

also for those of you with pain in the down yonder, the VP Foundation is a great site....

i sure pray one of these days someone comes up with a cure for this whole mess of autoimmune/fibro/ibs...seems its all related- most often you have one you have em all...

of course, if anyone has the answer dont tell big pharma- they will shut it down quick!!!
Title: Re: bladder issues
Post by: Carolina on March 30, 2013, 04:06:21 PM
Hi Lori,

I hope you find some relief.

For my IC the worst thing is a UTI, which produces terrible rebound pain after the infection.

To help decrease UTI's I take D-Mannose.

To help with the pain, I do mild exercise in the water.  Stretching is very good, for some reason, for the pain.

I also take Cymbalta, which is on label for pain.

And Aleve which works well for me.

I have to take Omeprazole to offset the stomach problems from the Aleve.

I tried Elmiron, but I was allergic to it.

Keep us posted on what works for you

Hugs

Elaine
Title: Re: bladder issues
Post by: lori on March 30, 2013, 04:46:25 PM
after posting this i started  huge flare... gee seems i ate nitrite free turkey  meat for lunch- wow, who knew it has potato startch and bunch other junk that is not in the nitrite free ham....apparently potato is high high high on oxalate list- wish the IC diet worked for me- it is way easier and has much more to chose from. am losing wieght- gee no wonder i cant eat anything!!!!!!

now im inmega pain, going every 10 min.

i cant do this anymore...
Title: Re: bladder issues
Post by: jazzlover on March 30, 2013, 06:55:39 PM
Sorry to hear this, lori! IC ended my teaching career 19 yrs ago. I am better now. Lyme disease treatment really got me 90% better in that regard.

I can't eat potatoes either. They cause pain in my body, not so much in my bladder, but it's still more than I can take...so I don't eat them.

No nightshades for me at all.

I hope you feel better tomorrow! Get some D-Mannose. I swear by it too.
Title: Re: bladder issues
Post by: Cindy on March 30, 2013, 07:20:59 PM
Lori I take aloe vera and cysta-q for my IC. When am in a flare baking soda and water calms my bladder. I try to mix it with cold water that way the taste is not bad. Ic-network is a great website with lots of tricks to help ease pain during a flare sometimes it helps sometimes not as much but is worth a try
Title: Re: bladder issues
Post by: lori on March 31, 2013, 03:50:32 AM
thanks jazz & Cindy,

I tried d mannose this summer and i cant remeber why but it didnt like me- i took it back got a refund!!!

i am on the DH Aloe and i love it

i cant beleive that the nitrite free turkey had enough potato stach in it to send me into such a flare....

its so hard becuase most of the IC diet doestn work for me- its more the oxalates- and that is a harder diet to follow!!!

does the AZO Standard help in a flare? may need  in those times when i cant be home ....
Title: Re: bladder issues
Post by: lori on April 01, 2013, 02:39:07 PM
confused.. one uro told me AZo  standard is not " a long term medication"
and when i asked anotehr uro gyno he said , take it as you need it.

im having detox syptoms of the LOD so i need it.. daily right now... any of you IC friends use this ? any thoughts?