Well… I’m still around, just haven’t updated the website in.. a 9 months or so. Oops!
Let’s see, it’s unbelievably cold in the Chicago area. I think the temp was -7 today. We’re all ready for warmer weather! Too bad it’s still 2 – 3 months away.
So, the big news is that I have been on another new medical journey. My liver is doing well (it’ll be 3 years post transplant this May!). However, this time it was another organ, my large intestine, that started acting up. It all began in May 2008, when I went in for an MRI of my liver. I’ve been reluctant to write about it… who reallly wants to share the details of their GI (gastro-intestinal) problems. & even more so – who wants to hear them!? TMI!
However, I think it’s an important issue that needs some attention. Did you know that in 2007 more people in the U.S. died from colon cancer
than from breast cancer & AIDS combined!? Isn’t that shocking? Esp. when you consider that colon cancer has an 93% recovery rate when found during stage I. The thing is there aren’t always tell tale signs & people find a lot of excuses to avoid getting a colonoscopy.
So, they found I had an auto immune disease (colitis
) and then biopsies showed "dysplasia" (pre-cancerous cells) in my colon. That, combined with my medical history of the auto immune liver disease, PSC
, put me at a high risk for colon cancer. So, when the GI team reviewed my case & recommended that I have my entire large intestine removed, I was shocked! I had visions of wearing a ‘poop bag’ on my side for the rest of my life. That’s something that happens to 80 year olds, not me at age 36!
I struggled with the decision. In 2006, when they told me I had a cancerous tumor in my liver, the choice was easy. We’ll do chemo, radiation, and the liver transplant. This was a gray area. I don’t have cancer, but odds are I could get it. When? What exactly are those odds? What’s involved with treatment? What is a "proctocolectomy
"? Will I ever be able to have kids? How quickly could cancer appear? How much time do I need to take off work?
So, long story short, on Dec 2nd 2008 – I gave up a few more body parts. They removed my entire large intestine, my rectum (Oh my – how weird is that!?
), and my appendix (which is attached to the colon). They took the bottom 1 – 2 feet of my small intestine and created a "J-pouch
" and further up the line, the created an ilesostomy. So, I now an ostomy
, a piece of my small intestine sticking out of my body, where wastes empty into a bag.
The good news… the post surgery pathology report showed NO CANCER! Hurray! Ok, so was it a mistake to have the surgery? You can’t think like that though. I’ve been down the cancer path once before & don’t want to risk it again. Also, the ileostomy is temporary. After 3 months or so, they’ll perform a 2nd surgery & "reconnect my plumbing". I’ll never quite be "normal" when it comes to GI stuff, but… I will go to the bathroom like a normal person again & not in a bag.
The recovery is taking longer than expected. The surgeon advised a 7 day hospital stay, which turned into 20 days! I was in for most of December & finally released on Christmas day. So, I missed most of the holidays. I’m still on medical leave from work, as my strength isn’t back yet, I take naps, am getting my appetite back, give myself IV fluids at home to stay hydrated, am taking 5 different medications, and figuring out my new medical attachments.
So, that’s where things are at. I plan to return to work in February. I’ve been spoiled in that I avoided the commute in this frigid weather. I miss being able to do things though & I’m having a heck of a time finding clothes that fit. It’s the first holiday season where I’ve lost 20 lbs!
My stomach sticks out though & I have this bag hanging down & an 8" incision which starts just above my belly button. I have to laugh when I look at my abdomen. Between my surgeries, I’ve lost my liver, gallbladder, large intestine, and appendix. Plus, I have 20" of incisions & 8 holes on my scarred tummy. You could play tic tac toe on it! I’m grateful to be alive though, cancer free, and just trying to stay positive these days. I hope you’re all doing well too.
Take care & God Bless!