“Waiting to Get a Colonoscopy Was My Biggest Mistake” My Familial Adenomatous Polyposis Story

May 30, 2015

My surgeon scheduled me to have a total proctocolectomy in which I would have a permanent stoma also called an ileostomy.

I went to the Mayo Clinic in Rochester, Minnesota for a second opinion and they agreed on the results and also reccomened that the surgery be performed. They concluded that if the surgery was not performed– I was at a high risk for dying with in the next six months.

I was in shock. It was all too much to grasp in such a short period of time–and at only 40!  The major surgery took place in February 2010 and October 2010 for the second surgery.

It was a ten hour surgery and during the second time, I was in the hospital for seven days. I was diagnosed with FAP disease which is a hereditary, rare disease.

Today I have had over 36 rounds of chemotherapy, seven major surgeries due to the cancer spreading throughout my body. The colon cancer spread to my liver, gallbladder, duodenum, stomach and part of the small bowel. I had my gallbladder removed, two sections of my liver removed, one from each lobe. I had a mass removed from my duodenum which was also cancerous and could have led to how much worse situation if not removed being right in the bile duct and pancreatic duct area.

. If I did not get a stoma or ileostomy I would not be here today. I have been cancer free since November of 2013 which was shortly after my liver surgery.
My doctors call me a walking miracle and still do not know- to this day– how I made it through all of this even when I was near kidney dialysis after my liver surgery due to infection.
I had two abscesses in my liver in which drain tubes had to be inserted for approximately 10 weeks. I have learned to cope with my stoma / ileostomy even though it still can cause complications and discomfort– but that beats the alternative!
I am now cancer free. The odds were totally against me but I’ve pulled through and fought like hell because I wanted to live, especially for my two daughters.
I went to the Mayo Clinic in Rochester every 90 days for follow up check ups up until September of 2014. Now I go every 5 months for my cancer check ups instead of 90 days and my port was already removed just this past January in 2015.
I am very active and eat very healthy and this whole experience has made my life totally different but in a good way. I see life in a whole new perspective and I appreciate all the small things that I never really recognized before this all took place and how precious life can be.
I am also now an official advocate for colon cancer awareness and I personally received a proclamation from the governor from the State of Illinois making March colon cancer awareness month. I was chosen to be a model for the 2016 Colondar through the organization called the Colon Club. in which I will share my story of how I fought for my life to stay alive.

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