Living with Interstitial Cystitis

I am 33 years old. I am a single mother of one. My son is now 9. I was diagnosed with IC in November 2003. My OBGYN Dr discovered it and sent me to a urology specialist. They have tried many medicines, many treatments, and many surgeries over the years. My last cystoscope and hydrodestintion gave me and my Dr one last look at the IC and how bad it had become. With all the medicines, treatments, and surgeries you would think it would go away. But it only got worse.

I had to have a major surgery August 7, 2008. This required total removal of my bladder. They had to clip a piece of my bowel to make a sack called an Indiana Pouch. My kidneys are attached to this like they were with my bladder. The only difference is that I now have a hole in my belly that I will have to put a cath in to urinate. Its like a port conected to the pouch.

It takes upto a year to recover from this surgery. But I feel 100% better with this than I did with the IC!!! With this Indiana Pouch, I have no control of when I have to pee, I do have spasms that feel like mild contractions. Again, it is nothing like IC!!! As the pouch gets full, I get spasms. I then go to cath myself to empty my pouch. I do pee on myself from time to time. Its kinda funny though, because I pee out of my belly and my shirt gets wet…..LOL….

If you have any questions I will be more than happy to talk to you! I am only on the computer when I am at my moms doing my laundry, so it might be a few days before I see anything.