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dilmiller

Interstitial Cyctitis

Posted by @dilmiller in Kidney & Bladder, Jul 15, 2011

I just started another treatment for IC of Barcarb, Lidocain and Heprin via self catherization. Is there anyone out there that is using this treatment and if so, how often and is it working for you. My doctor changed my treatments from twice a week to once a week. I am only getting relief during the initial treatment and maybe half of the next day.

Diane

micki

Posted by @micki, Jul 23, 2011

DIAGNOSED IN 2004 WITH IC WAS TREATED POST-OP WITH
TREATMENT CALLED DSMO? WHICH DID HAVE HEPRIN, NOT SURE
OF OTHER INGREDIANTS COST $300 A TREATMENT ONE DAY
MD CAME IN AND SAID IT WAS NOT WORKING DID NOT OFFER ME
ANY ALTERNATIVE EXCEPT TO TAKE PRE-LIEF, FILTER WATER,
AND AN AMINO ACID. HAVE NOT SEEN ANY MD SINCE RE: IC
SOMETIMES TAKE THE MEDS LIKE DITROPAN ALSO HAVE
TYPE TWO DIABETES. THEY ALSO FOUND SQUAMOUS CELL
METAPLASIA WHEN THE BLADDER DISTENTION WAS DONE.
PREHAPS THEY NEED TO DO A CYSTO AND A BLADDER
DISTENTION (HAS TO BE DONE IN SURGERY, SAME DAY). IT
WAS NOT PAINFUL POST-OP AND I WENT HOME SAME DAY.
SEEMS TO BE ONLY WAY THEY CAN LOOK AT ENTIRE BLADDER
WALL. ONE FRIEND HAD PROBLEMS AND COULD NOT GET
AN MD TO DO ANYTHING FOR HER (YES SHE HAD INS,.) SHE
FINALLY GOT A UROLOGIST THAT WAS FEMALE. WHEN SHE
WENT IN THEIR WAS A FORGIEN OBJECT LEFT BY A
PREVIOUS SURGERY THAT SHOULD NOT HAVE BEEN THERE.
SHE WAS IN AGONY FOR OVER A YEAR, PRIOR TO SURGERY.

MY TREATMENTS WERE DONE IN OFFICE. THEY WERE PAINFUL.
ONCE A WEEK FOR ABOUT 5 OR 6 TIMES......THEY SEEMED
TO CAUSE MORE PAIN FOR ME. DO NOT KNOW TIME FRAME
YOU RETAIN TREATMENT OR YOU ABILITY TO CATH YOURSELF
WITHOUT CAUSING MORE IRRITATION. IT IS NOT AN EASY
THING TO DO. YOUR POSITION IS IMPORTANT......LENGTH OF
TIME LEFT IN I ASSUME IS DICTATED BY YOUR DR.
HAVE FOUND EXTERNAL IRRITATION IS PREVELANT.

FIND OUT HOW LONG HE PROPOSES THAT YOU TAKE THESE.
WHAT ALTERNATIVES THERE ARE
FIND AN IC SUPPORT GROUP IF YOU LIVE CLOSE TO ONE
AND THE IC FOUNDATION AS ANOTHER SOURCE OF INFO.

LET ME KNOW HOW IT WORKS OUT GOD BLESS

deekrull

Posted by @deekrull, Oct 2, 2011

If there are any other people who have IC I hope you read this because I have had IC for over 25 years. I have a degree in clinical hypnosis so when I was told you will probably loose your bladder I went to the medical library at UCI and learned as much as I could about IC. There isn't much and most are hopeless. My Dr told me I knew more about IC than he did. He also mentioned a book called You Don't have to Live With Cystitis by Dr Larin Gelespy. She has been successful with treating patients with vitamin therapy. I put my IC into remission for 9 years until my Urologist decided I need a bladder lift for stress Incontinence. The surgery reactivated the IC worse than it was when I was first diagnosed. It took me a year to get it under control that time. Her book spells out what to do, vitamin therapy to build up what your body is tearing down and diet are key. I will be 65 in Jan. and I eat what I want and I take my vitamins spread out four times a day. It works and the book is still in print. I have been through DMSO with Lidocain ( I think the first person in this discussion was wrong about heparin because that would cause you to bead more) treatments three times a week and i had an inter-stem implant to disrupt the pain receptors. They had to remove it because it was causing damage to the femoral nerve in my leg. I have pretty much done it all and the only thing that has helped me is Dr. Gelespy's book.
Namaste

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