Amanda From Cindy
Dear Amanda, I too suffer from Interstitial Cystitis, I have been dealing with it for 10 1/2 years. The first few years were the hardest. I would go in for bladder instillations with the DMSO twice a week. After 9 months of no real relief my urologist called me in to his office to discuss removing my bladder and urethra which I decided to get a 2nd opinion down at U.S.C. in Los Angeles. The top leading Urologist of the United States became my doctor who said that there was no way of considering this at that time. I continued to have the bladder instillations once a week driving 70 miles one way to continue my treatments. I have talked with other people who have had the coke pouch surgery and the ileostomy pouch, there is alot more chances of infection. One dear lady I talked with ended up going to the hospital every month because the coke pouch (is where they take a portion of your bowel recreate it to act as a bladder resorvior it holds your urine you still will have to empty it yourself where thereis a stoma placed in your side, a permanent small opening like someone with a trachotomy has that opening in their throat with a lid on it. This one will go into your left side so you can drain the urine from the coke pouch.) The very best thing you can do is collect information from other people dealing with this disease. It is also an autoimmune disease that is attacking your bladder. I want to encourage you to hang in there. Like my doctor told me at usc medical, there is research going on and not to give into removing your bladder the cure can be just around the corner. If you would like, go ahead a email me. I would like to hear from you..yours sincerely, Cindy