Judi's Story

I was diagnosed in 1978 at the age of 22 with a bladder disease called Interstitial Cystitis. It was something I believe I had all my life. The main symptoms for me were frequency and urethral pain. By frequency I'm talking about urinating 30 times a day and getting up about 4 times a night. If I had been smart I would have bought stock in toilet paper. When I was first diagnosed I was told there was no cure ( which still is the case) but there were different treatments and it may take time to find the right one. After eight years of trying everything from drugs, hypnosis, behavior modification, and surgical procedures ( all of which did nothing except make things worse) the decision was made to remove my bladder. When they finally took it out I was told it was just a sack of scar tissue, not even really a bladder anymore.

That was in 1986. I spent Dec. 31 in the operating room and New Years Eve mostly out of it. So as of Jan. 1 1987 I was a new urostomate. Initially the best part of the surgery was that the stabbing urethral pain was gone! I could now pick things up off the floor with wanting to cry. I remember deliberately throwing things on the floor of my hospital room, just to experience this. At the time of my surgery my sons were 2 and 4 years old so this was a definite plus. I also slept through the night for the first time in my entire life. The feeling was indescribable.

Ufortunately I had some problems with frequent septic kidney infections, every month. They discovered this was due in part to a poorly constructed conduit. It was longer than it shouldhave been and ended up turning over on itself. In a addition my stoma stenosed which means that the opening started to close up. Needless to say I had a different surgeon in a different hospital do the revision. All went well at first and then infections returned with a vengeance. It turned out that the conduit was retaining urine instead of pushing it out through the stoma like it should. In 1992 I had the whole thing takenout my surgeon created a continent pouch, which I catheterize about 4-6 times a day. I love what I have now! My stoma is very tiny, about the size of a pencil eraser and it is flush with my skin. Unfortunately I still get the bad infections, but they are not as often as before. My surgeon said I am just one of those people who is infection prone.

So I have learned to accept them and try to live life to the fullest in between getting sick. Because of all the surgeries which included bowel resections, I've had 2 bowel obstructions which needed emergency surgery. I have been told that there is a good chance it will happen again. The prospect does not thrill me, but I try not to dwell on it. Given the choice knowing what I now have to deal with,I would still choose the ostomy. Living with Interstitial Cystitis on a daily basis was awful. I love that my daily activities no longer revolve around trips to the bathroom.

Judi

Previous

Stories

Next