Coping | Ostomy
My journey through the ostomy world actually began at birth. I was born with a congenital defect known as Imperforate Anus. This is a condition that occurs in about one in every five thousand births or so; many times the only way of correcting this condition is by surgical intervention. Shortly after my birth, doctors performed a colostomy so that I would be able to survive until further treatment could be performed. When I was 2, doctors were able to reverse the colostomy, but my struggles were far from over. By the time I was 3, I had endured 5 different surgeries and had spent the greater part of my life at Children’s Memorial Hospital in Chicago.
My childhood and teen years were spent in a home where my father was physically, emotionally, and sexually abusive. Along with that, I had to endure nearly constant digestive problems. Leading specialists and authors, Walker, Golding, Taylor, Menard, King, Peterlin, Ward, Lidicker, and Levin, agree that children who grow up in this type of environment are more likely to develop numerous physical and emotional maladies than those who do not, and so it seemed it would be for me. My life seemed out of control.
As a way of controlling my life, I started purposely controlling my diet. At one point I was controlling my diet to the point that I was diagnosed with bulimia, as I would binge and purge when I was alone, so that I would appear normal when I was in public. Eventually I began having horrible abdominal cramps and was put on multiple medications to try and manage my pain. After seeing multiple doctors in Chicagol, and, and even a specialist in Minnesota, I was told that I had Irritable Bowel Syndrome. That completely changed in March of 2011.
On that fateful day in March, the pain became so intense that I decided I needed to go to the hospital. Being somewhat of a stubborn soul, I somehow managed to drive myself to the hospital, even though I knew I should call an ambulance. I had already been hospitalized for 14 days in January for similar pain that was diagnosed as Ischemic Colitis. I fully expected about the same thing this time. It seemed as if my problems were going to be discounted again, but luckily one of my co-workers happened to be there for an entirely different reason and stepped in to help me. After a myriad of examinations and tests, I was whisked away for emergency surgery.
When I woke up on March 17, 2011, I awoke to a brand new world. Suddenly I found myself in a hospital room surrounded by friends and family. That’s when I learned that I had an ileostomy. When the doctor came in to talk to me he told me that my entire colon had died and turned septic, and had to be removed. He told me that it was so bad, that he was surprised that it hadn’t burst. He also explained that I had a blood disorder known as Protein S Deficiency, a disorder that causes blood to clot too quickly. Apparently the arteries leading to my colon had become blocked by clots, and my colon, not receiving any blood died.
My journey hasn’t always been easy since my surgery. I fell into a deep depression after surgery and eventually sought out a therapist. I was fearful of doing the things I had done before surgery and stopped a lot of the activities that had been joyous in my life. I worked very hard to get back on track and while I was doing the work I never thought I would go back to “normal” but now I can look back and say my life has become more full and “normal”, if that’s possible, since those fateful days in 2011. I have gone fishing, played tennis, gone snowmobiling, jetskiing, and I have even gone on a 17 hour road trip with my girlfriends. I work out regularly and have learned to live a full and healthy life. I regularly attend my local ostomy support group and have met some amazing people through it. I no longer view myself as having a health problem, just because I happen to have an ileostomy. As a matter of fact I view myself as a much healthier person because I have much more freedom than I ever had before.
Since my life turned around I have met a wonderful man who proposed to me on February 26, 2013 and we took our vows on April 5th 2013. He thinks I’m wonderful, and is always there to help me navigate my way through life. He knows and understands the struggles I have been through without once judging me for them. I remember the day I finally told him about my ileostomy, I was so nervous! After I finally told him he looked at me and said “Is that what you were worried about. Is that all you were worried about telling me? Did you really think that would make me look at you any differently? You are amazing! Just because you have to wear a bag doesn’t make you less amazing, if anything it makes you even more so.”
If you had told me back in 2011 that one day I wouldn’t care who knew I had an ileostomy, I would have laughed at you, but now I have an entirely different view. Nobody should ever be ashamed or embarrassed because they wear a bag. This bag saved my life! Because of it, I have my whole life ahead of me!
I’m not saying that there haven’t been bad days, and there are sure to be more along the way. I’m not saying that there aren’t days that I wish I didn’t have this bag. But on those days that I do have a bad day, I look at all the good in my life, and I know it is alright to have a bad day. It won’t always be that way. I know that I am not only a survivor but I am a thriver!
What a wonderful story and a great couple. Best of luck for the future!
Thank you for sharing your story. I can relate to it having been through similar situations. It’s definitely helpful to others to hear about your positive outcome!!
Thank you, thank you, thank you!!!! Your struggles have given me hope and such an inspiration!!! I can only hope that I can pay it forward some day. Bless you!