newbie to IC site

[yorkilvr]

I want to introduce myself. My name is Patricia and I suffered with IC about 11 yrs. ago and now it is back again in full throttle. I am in constant pain usually ultram only takes the edge off but I am dying from this pain.. I have an appt Dec. 10th with The Urology Institute and at that time I am seeing Dr. Arnaldo Trabucco for treatments with Neuromidula, who is located in Nevada. I am hopeful this will work. I happened to see someone on this site that was treated by him and is not experiencing any pain after the tx. I just ordered books to see what I can and cannot eat. As far as I can see, the only thing I can eat is boiled chicken is fish not seasoned. It is like a balancing act never knowing if I am going to have more pain then is usual for eating something. I had a bladder distention a few weeks ago and also DMSO treatments that didn't work. I am going to see another urologit shortly in my area to possibly give me a rx for elmeron (I have no idea what that is?) and a few other things that I found on this site that may be helpful.
I have come to the realization I can't drink coffee. I will miss that terribly. If anyone knows a coffee that isn't high in acid let me know so I can continue with something good!! God Bless you all for keeping me sane..

york & pom ilvr

[Claredale]

Welcome to the site. Check on the patient handbook and you will have alot of your questions answered regarding meds like Elmiron, etc.

Feel free to ask anything, we have been where you are right now and we understand.

Tracey

[SharonA]

Hello Patricia and :welcome:to the ICN. I am so sorry that you are having problems, again.

There are low acid coffees available in the ICNSHOP. http://www.icnsales.com/

You can find the coffee here:
http://www.icnsales.com/Beverages-p-1-c-6.html

[TaraTX]

Wel ome to our community. I was recently diagnosed and Elmiron is working for me wonderfully. It leaves me with a dry mouth and diarreah, but that's nothing compared to where I was before I started. Try to stay positive. It's hard at first, but it does get better. It's bad now, but hopefully you will get you where you are able to function normally. There are a lot of days now where I forget that I even have this stupid disease, except for when it's time to eat of course.

[leelee88]

Hello and :welcome:

[yorkilvr]

Welcome to the site. Check on the patient handbook and you will have alot of your questions answered regarding meds like Elmiron, etc.

Feel free to ask anything, we have been where you are right now and we understand.

Tracey

Hi Tracy,

Thank you for your response. It is good I am not alone with this terrible disease. Where do I get the patient handbook from? The only things I received from the dr's office was 3 pamplets on IC. Do the baths really help? Heating pads- where should I put it? On top of my bladder? I don't feel it does any good down below.
And the microwavable one doesn't stay hot long does it? I don't have one of those.
I am going to a new urologist next week hopefully in my area.

Have you heard of the medication/treatment of Neuromodula that I am going for in Nevada? he invented this procedure and it is working for IC patients.

Thank you so much for your help!!

Patricia

[SharonA]

Patient Handbook: http://www.ic-network.com/handbook/