I have

[HLB01]

Now, i hear everyone talking about flares & rescue instillation. So here are my two questions:

1. What exactly is considered a flare?
Since i've had the hydro (Aug. 14, 2007), i now go to the bathroom 40 to 50 times a day and 10 to 15 times a night with pain. Before i had the hydro it wasn't nearly as bad and i had no pain after using the bathroom. IS THIS WHAT A FLARE IS.

2. What exactly is the rescue instillation.
I don't know what this is. Is this the treatment where they inject some medicine into your bladder and if so, does it just less the pain or the need to go to the bathroom so much.


3. HAS ANYONE HEARD OF PUTTING SOMETHING IN YOUR SPINE TO MONITOR OR REDUCE SPASMS.
My doctor is sending me to some specialist in LA for consult. I don't know exactly what he's talking about, but he told me that they would basically put something into my spine that would monitor or help reduce my bladder spasms. I want to know the risks or benefits if anyone knows.

MY STORY:
I've been telling my doctors for about two years now that i know something isn't right with how much i use the restroom. The first doctor about two years ago told me to take Sudafed and do keagles. I was kind of upset about that, I kept pushing the doctor and finally he sent me to a "specialist" and they determined i have an small bladder. Ok, so a year went by and it was getting worse. Well, at the beginning of this year i started going back to the doctor cause it seemed like it had gotten alot worse. At first the doctor told me to get the Elmiron. And i was all for it, until i realized how much it cost. I couldn't afford it. I went back to the doctor and he recommended the Hydro surgery and explained to me that some people benefit from the expansion and that it would be exploratory to see if there's anything. Well, I had the hydro and the first two days were fine, after that, i know have pain after urinating and i go twice as much. After the hydro, i've had a really hard time dealing with this. I feel like i can't do anything. I can't go to the store with going atleast 3 times while i'm there, i can barely make to work without either stopping or freaking out that i'm going to pee myself.

[sasi]

A flare is an increase in symptoms-whatever your symptoms are. I don't have a frequency problem in general. My problem is pain. So a flare increases my pain, mostly in the urethra, but also in the bladder. If it's really bad, I also have an urgency feeling with burning, which makes me want to kill myself, but I can still hold my urine. For others, it increases frequency or stabbing pains, or other things. Different things for different people. It basically is a spike in your symptoms.

If you are n a bad flare, try the radical diet, it helped me tremendously, but not the "avoid the worst foods" diet- go all the way. I lived on water, potatoes, olive oil, carrots and pears for a few weeks. I drank a lot of water and kept my urinary tract warm at all times (heat pads, Sitz baths, warm blankets)-at the expense of being hot all the time-heat works wonders for my bladder. And then comes relief and then you can reintroduce the OK foods. Maybe these will help you. Also try hot Sitz baths. Try everything people talk about on this site. I hope you find something that helps you. There are also some supplements sold in the IC shop, they help a lot of people- here Cyprotek, Aloe Vera pills, etc. You're not alone. You can share your pain here.

[ICNDonna]

First of all, I suggest you be checked to be sure you don't have an infection working. The Diet section in the Patient Handbook will guide you in that area.

I think probably what your doctor is talking about is the interstim; you can read discussions about it in the Neuromodulation forums.

Warm hugs,
Donna