So I have been poking around here on the board for a couple of weeks but I haven't had the nerve to bring up my issues. I finally have the courage. Please be gentle.
A little history...I was diagnosed with Crohn's Disease at the age of 10. I have been treated with various medications (6mp, imuran, azulfadine, prednisone, etc.) and with surgical options (resections X2). Currently, I am living with a cronic rectal stricture that is treated with balloon dillation about every 3 months. My gastro has been at me for about 15 years to get a colostomy. I finally caved in to his request and agreed to talk to a surgeon. I really only agreed to do this to get him off my back about it. I had no intention of actually doing it.
At my last colonoscopy, I was informed that my ileo anastomosis (my splice where they reconnected me) has developed moderate crohns disease and a persistant stricture. Apparently it is at a curve and would be very dangerous to try to force it open. He said "it needs to come out."
I had a follow up appointment with the surgeon later that week and she immediately said "it has to come out and we need to remove the rectum also." I was devastated. That kind of news is tough enough but even worse when you feel healthy. I have talked with some other people here on the boards and friends with ostomies but I have some questions about logistics of it all.
I got copies of my test results and now I'm totally confused. The doctors made it sound like I had no choice in the matter. It was do or die time. But the reports don't read that way.
I am getting a second opinion on my situation from medical professionals but I want to get some personal stories that people live with ostomies. Please forgive my simpleton questions.
Where is an ostomy located? Right, left, hip, abs, etc.
How big is it?
Does it hurt?
Does the bag go under your clothes or over your waist band?
Thanks for the patience with me. I respect you all for your openness about your ostomies. Even though I don't know you, I think you are all very brave people.
Crohn's Disease - 29 years