I feel as though I missed my 20's, 30's and my 40's. Not intentionally of course, but all of your energy is spent just trying to get thru the day. You put everything off until tomorrow, and then one day you look up and thirty years have slipped by. This is simply survival, as dramatic as that sounds. I can't remember what a good day is. Yesterday was always better, but you don't know that until tomorrow. There are so many things I thought I would do. I was not fully grown when I was diagnosed, I often feel that the choice to do what I wanted with my life, when I grew up, was taken away from me. I don't think I even know what I wanted to be or do at that time, I was just being a teen-ager, actually I was in my senior year of high school, and I was at my best. I enjoyed school,being with my friends, deciding where I would go to college and loved playing field hockey and softball. I thought the world was ahead of me. I was never extremely out-going, but I had enough confidence and self-esteem, that most young people seem to possess. One cold night in February, 1976, any hope and dream that I thought I might have had about my future, vanished. It seemed to have been ripped out from under me. So close, but never to touch. This was the night, I had to undergo emergency surgery for a ruptured ileum, which they initially thought was a ruptured appendix. This was also the first time, I heard of crohn's disease and that this was the cause of my perforated intestine. That was all of the info that was given to me at that time, other than this was a lifelong incurable illness. My local medical community was not knowledgable of crohn's disease, as most small town, local medical care were not. They tried to convince me that everything was alright and I should resume my life as it was before. No one addressed the emotional aspect of what living with crohn's disese or any other incurable illness meant. They just kept telling me that I was all better now, and the fact that I still felt ill, was unacceptable. I was doing something wrong or faking it for more attention. No one could explain what was happening to me and I had better snap out of it real quick. I was emotionally traumatized and a part of me shut down. No one believed me (medical personnel, that is), I started to not believe me either. Why was I doing this terrible thing to myself? I must be a terrible person to have this awful pain and feel so sick, yet everyone says it is not true. I started to hate myself. I no longer held my head high, I cowered in shame. My pain, angony and confusion became loneliness and disgust. What little self-seteem I once did have, was no longer there. 32 years later and I still wrestle with some of those inner demons, they are so deep rooted. I still often feel like that lost 17 year old girl struggling thru. I am finally trying to crawl out of this black hole and let that little girl finally grow up, at least to the same numeriacal age as me. I have wasted precious time. I want to get as much as I can out of what is left!
crohn's dx: 1976; 10 surgeries, 1 intestinal by-pass, opened in 1985, 1 temporary ileostomy, removed in 1991; Entocort,Metoclopramide,Flagyl,6MP,Protonix,Oxycodone(10mg),Oxycodone CR(20 mg) for pain.