So I had my bladder removed in January of 2015. After all the researching and thinking, it was the best decision I could've made for myself. It definitely wasn't an easy road and there were complications, but this surgery saved my life. Interstitial Cystitis is a horrible, painful, and embarrassing disease. I would have to urinate hundreds of times during the day and night. When I would urinate, it would feel like razor blades had cut everywhere inside and out, and acid was in the urine. Then my bladder never gave me any notice that I needed to get to a restroom. When I had to go, urine just started to come out. I had absolutely no control. So there were so many embarrassing public accidents. What was worse were the many people pointing and laughing at this grown woman peeing her pants. So I finally said enough was enough and had the surgery. Surgery wasn't scary for me because I did so much research. I was prepared for every outcome that could happen. Immediately after surgery, I felt that burning in my bladder was gone. It was amazing to wake up to that pain gone that I had felt for most of my life. I was in the hospital for six days and was released. I did amazingly, my doctor said. Once I was at home, I started to get some pain in my stomach that the pain meds couldn't touch. So we went to the ER and found that there was an abscess in my pelvis where they couldn't drain. So I had to get a PICC line put in and give myself IV antibiotics for a month. While I was recovering, my surgeon called me personally. During surgery, she had removed my appendix because it looked funny. So she called to let me know that my appendix had cancer in it. She didn't want me to freak out when I looked at my reports. So she called to explain everything to me that it was a visit in time. The cancer was contained in the appendix and I didn't need any further treatments. At that point, I knew I made the right decision to have my bladder removed and the right surgeon. A year after my surgery, my Interstitial Cystitis came back, but I knew that was a possibility, as my surgeon had warned me, but I'm just thankful I don't have to urinate hundreds of times a day/night. So I love my bag and have no shame in it because it saved my life in more ways than one. So I say embrace your bag and stoma. Get some Sharpies and color them if you have to, but remember they saved your life. So love them and love life and laugh a lot.
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About seven years ago, just about every aspect of my life was ostomy related. From the moment I was told an ostomy might be needed until some months down the road I existed as a person afflicted with a colostomy. I feared someone other than my immediate family might find out I had a bag. Ugh! What could be worse? Suppose it filled real fast when I was out with no place to hide and take care of myself. God forbid should it leak in church! Suppose I roll over on it in bed. I was a lesser creature, destined to a life of emotional anguish and physical routines different from most of the rest of the world. I felt like a freak. Then I found folks like you guys here, read your stuff, really “listened” to what you had to say and I began looking at things differently. We know perception is everything and I began to understand how good things were relative to what they could’ve been. So many folks had it so much worse than I did. That didn’t make my discomfort go away but it exposed how fortunate I was to be dealing with my stuff and not their’s. I felt a little guilt, maybe selfishness but quickly forgave myself by understanding I just wasn’t smart enough to fix my feelings. Then, I wonder what smarts have to do with feelings. My perception was warped so my perspective toward my existence was warped.
I learned over the last few years with the help of lots of folks right here at MAO that I could be better at living just by accepting some facts. It is what it is and so what? It’s not the worst thing to happen to a person.
I think everything is, in some way, related to everything else. I just put the ostomy thing in the back seat and drive forward.
Respectfully,
Mike
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