Sunday, February 13, 2011

Some info about me ...

Hello everyone! Just wanted to start off by thanking everyone who is apart of CDSN. I truly never imagined when creating this network, that people would actually find it. For years I lived my life with great friends, family - but never really knew anyone else with Crohn's Disease ...or other IBD's like UC.

I've had 4 abdominal surgeries, and over 20 rectal/anal surgeries from fistulas and abscesses. I was always sick starting around 4-5yrs old - but the doctors never knew what to look for. When I was 10 my appendix ruptured - the doctors thought this was the underlying issue the entire time. The reality being Crohn's destroyed my appendix. I was finally diagnosed in 1999 at age 19. I had my first resection in 2000 removing around 2ft, and recently had one to remove a large amount of bowel adhesion's in Aug of 2010. In between I had a fistula at the bottom of my belly button - which started leaking bowel fluid. Had to have my belly button tract removed in 2004 - called an umbilectomy. The 3 fistulas that caused 20-22 rectal/anal abscesses were finally removed in 2005. They couldn't remove them earlier (even with cipro and flagyl) because of constant infection. The abscesses were very deep - so I had to be put under for all of them while they were cut, drained, and packed.

Unfortunately it turns out I've been living with Hepatitis B for the last 2.5-3yrs - and no one knew. When I was on the Humira, it gave the hepatitis an opportunity to be more aggressive - and cause some serious damage. Since I went so long without treatment it is already in stage 3. This means a transplant is in my future. The disease has become chronic, and caused cirrhosis of the liver. Cirrhosis for those who don't know is damaged scar tissue that never regenerates. It can also be a source of bacteria and disease. My liver function is not great which causes my body to retain fluid. I've had 4 (soon to be 5) times a paracentisis - where they take a 14 gage needle and insert it into the abdomen and drain the fluid. The last time they drained 3.75 liters (each liter ways 1-1.5lbs). When they first diagnosed me in October of 2010 I was in the process of serious liver failure, and my right kidney was shutting down from the retained fluid. I was in the hospital for 8 days, released for 2 days and then had to return for 25 days! YES 25! Right now I'm not 100% sure what the future holds (but who really does?) ... I just plan to keep on fighting.

For me this is turning into an incredible experience. Before CDSN I had never created anything on the web - outside of my personal blog. Hearing the feedback from everyone has been humbling, cathartic, surprising, and truly life changing. I've made new friends who I can say fully understand. When I was diagnosed in 1999, after 14yrs of never knowing what was wrong. I was 19, a point when I was ready to finally embark on my life - to live. Needless to say, staying in University or holding down a job was challenging. Since I was a kid I always wanted to help people. I tried returning to University to be a social worker...I still only have 4 credits lol. Long story short ... I finally feel like I'm accomplishing something with my life; something to wake up for - helping people.

For way too long I lived my life with Crohn's Disease running it. I've been on disability for years, I rarely want to leave the house for numerous reasons - whether it be a bathroom, pain, nausea, fatigue, worry of infection, ...I could go on. I felt *and kinda still do, working on it!* that staying home is easier - when there is a wonderful world around me that I am barely taking advantage of. CDSN has started to help me re-enter my life; step out of limbo and start living again. I've kinda always been a relentless optimist; never going to let Crohn's the best of me. I am ready to start living again, one day at a time. I am tired of Crohn's ruining so many wonderful opportunities, and relationships...I am someone LIVING with Crohn's NOT someone SUFFERING from it.

Thank you everyone who has taken the time to read this...Together as a community, we can let the world know about Crohn's Disease- put faces and stories to a disease that far too long has only been something people have heard of, or know someone living with it, but truly doesn't understand it.

I am going to stop rambling now... best wishes to everyone.