Let me preface this by saying I am new to blogging and have no idea what I'm doing... so bear with me. :)
A little back story on my condition. I was diagnosed with Ulcerative Colitis (UC) close to 10 years ago. I had symptoms for approximately 10 years prior to being diagnosed. I was told that it was everything from "nothing" to being "all in my head". After my oldest son was born I finally started passing enough blood that I was scheduled for a colonoscopy and diagnosed with UC. Since then I have been on every medication that is currently cleared for use with UC. I have been on infusions of Remicade, Humira, 6MP, various assorted pills, and combinations of all of the above. I have been hospitalized three times in the past 7 years because my symptoms could not be controlled. Each time I would be admitted for three days of IV steroids and end up spending a week to two weeks. The second time my GI doctor recommended me for surgery and the surgeon said no. It wasn't bad enough in his opinion to warrant the operation. At the time I was devastated, but since then I have realized God had a plan and I had my last little boy. Not that children are impossible after surgery... just harder. This past July I was hospitalized again and after spending a week I was sent home and put on a combo of 6MP and Remicade. After 6 months we could see this wasn't working and once again I was recommended for surgery. I was so nervous meeting with the surgeon waiting for another no, but this time I got a yes. I climbed in the car after that appointment and cried. For those of you who have lived with this... you know how crippling it can be. I have three young children that depend on me daily that I want to be healthy enough to raise. I want to take them to the park, go to hockey games, amusement parks, school plays. There is so much I want to do with them while they are still young and I am finally going to get that chance. The feeling is overwhelming. I am scared, relieved, and excited to name a few.
As soon as I got the "yes", I started once again researching the surgery, the recovery, peoples stories, their advice, etc... I realized very quickly that their is not a lot out there that is positive. I found a few blogs that documented the entire procedure from them getting their "yes" through all their surgeries. They were the most helpful things I've read. I decided right away that I wanted to document mine. To help anyone else that may be looking for information/pictures as well as to keep my family and friends updated.
For those not familiar... I will be having a complete colectomy with a J-Pouch. I will have two surgeries. In the first one they will remove my entire large intestine and colon. They will take a portion of my small intestine and create a pouch that will attach to my rectum and be used down the road in place of my large intestine and colon. They will also temporarily place a external bag higher up on the small intestine so that all the lower work can have time to heal. In 8 to 12 weeks (when all is well) I will go in for a second surgery. In this one they will remove the temporary external bag and reconnect all my "guts" so that everything will be internal.
I am counting down the days until I start my new life. In four days I go to get a little marker spot on my tummy to mark where my temporary external bag. In 10 days I will arrive at the hospital for my first surgery. As the days get closer I get more excited and nervous at the same time. My mind has all these "what ifs". Then I get excited to lead a normal life. Then I get a little overwhelmed because I honestly have not led a normal life in 20 years. I have always planned every trip, every obligation, every party around my disease. Every time I stepped out the front door was planned several days in advance down to what medications I needed, what food I ate beforehand, how many changes of clothes to take "just in case", and what route to take to be closest to bathrooms. I can't imagine not living that way. I am programmed to plan. It is surreal to me that I wont have to anymore. Thinking about it makes me smile.
