Here it goes…
I am 35 years old. For the past 6 years I have suffered from Interstital Cystitis and I was actually going to venture into Stem Cell treatment when my FAP/Colon Cancer diagnoses happened. Over the years ever since I was maybe 22 I had problems that were similar to IBS, I was told that was what I had even when I was never given a colonoscopy. Fast forward to age 35 I decided to finally see a GI since I was suffering from some mild constipation all of a sudden. When the doctor heard I was also anemic and had an Iron Infusion he wanted to perform an upper and lower to see if I had any bleeding polyps, etc. that would be causing my anemia. Sept 23, 20111 I woke up from my colonoscopy with the shocking news I had over 100 polyps and diagnosed with FAP. I am the first one to have this genetic disease so I am the Mutant in my family. I am very glad I tied my tubes at age 29 since this is a horrible disease to pass on to anyone.
When the pathology report came back it said I had “sever dysplasia” and was told to remove my colon asap my clock was ticking that I would have cancer. Well I don’t just let someone take a huge body part out of my body without me understanding my disease and know my options. I went to the top Colorectal surgeons in the US that happen to be in Dallas along with someone who did over 100 Jpouches in his residency at Cleveland Clinic. I didn’t know if the jpouch was for me since I do Crossfit and Olympic Weightlifting and I heard it is very hard to keep things in. So of course the man who did many jpouches said if he opened me up and had desmoids I would be stuck with a permanent Ileostomy. Well that did not fly with me. Even with cancer looming over my head I refused to wear a bag. I later went to the 2nd surgeon and fell in love with him but my Oncologist mentioned I see the 3rd I went to. He made sense, he wanted to look at my colon himself and see what was going on, to him the pathology wasn’t clear and he put having an IRA on the table. He removed the largest polyps that was in my rectum that concerned everyone the most. Turned out that had a T1 tumor in it so I was diagnosed with rectal cancer but my margins were clear. This left me with the only option of having an Ileostomy. I then left for MD Anderson to see if they were doing anything “experimental” for my disease. No and after I was probed for the very LAST time I was over it all and I booked surgery that following week to have the BCIR done. I thank whoever to this day who told me about the Kpouch and BCIR on the Gardner’s Syndrome/FAP Yahoo message board. The most active group I could find.
I found out who my friends were and even met distant family members that helped me out financially that I hardly knew. I got donations for Spa and car payments since I could no longer work in my field as an Art Director/Designer. I went from a 80k salary to zilch. It is scary when faced with the unkown. I am desmoid and cancer free as of December 9th 2011 when my large bowel,rectum and gallbladder came out. My life is rough now, I am still on pain killers, can’t return to work and suffer from depression. Every day is a challenge and sometimes I wonder when it will get better but I hear it does so I hold on to that. I am an Atheist so I never say pray or have faith. Instead I just think positive thoughts and try to smile underneath the pain of having a new pouch and horrible Interstitial Cystitis. Maybe in the long run my bladder will be better without the colon.