Last week, I wrote a blog post entitled, "What A Difference A Year Makes" and it highlighted how different my state of health was just one year ago. This is kind of a continuation of that theme, because today is in fact the day I had my proctocolectomy. Yes, the day that I was wheeled down to the 5th floor of the Foerderer Pavilion at Thomas Jefferson University Hospital, and Dr. Ben Phillips and his awesome team removed both my colon (large intestines) and rectum and formed "Fill-up", my stoma. It's my "Stomaversary!!!"
You may think of "Stomaversary" as a silly, or even cheesy term. But it's actually a term that's pretty common amongst people like me, who have stomas and live life as an ostomate. I can remember September 6, 2013 very clearly, as well as the days leading up to the beginning of my new life without Crohn's. I'm pretty sure if you ask anyone else with a stoma, they too will remember when (and most likely where) they got it.
Looking back, I can remember that I already had a hole in my abdomen, caused by a nasty fistula, and it was leaking waste for a whole week prior to my surgery. When I arrived at the hospital, the doctors put me on "NPO" status, which is an acronym for "Nil Per Os" (Latin) which basically means "nothing by mouth." I went a whole week without eating, but 1) it wasn't the 1st time I'd experienced a week-long NPO, 2) it wasn't that bad because they gave me IV nutrition (TPN) so I didn't feel overly hungry 3) due to the fact that the waste coming out of the fistula opening was burning my skin AND I was having countless accidents from waste escaping the "normal" way, eating probably wasn't the best idea!
However, the night before surgery, while viewing countless ostomy related videos on YouTube, I can vividly remember asking the medical team if I could have some liquids. They approved and I was brought a tray of orange jello, Boost Breeze (peach flavored), chicken broth, and Wawa Lemon flavored iced tea. Any other time, I would've scoffed at the dietician aide for bringing me an all liquids tray, but this time I savored every item brought to me that night in a sort of "Last Supper" ritual. Even an hour or two later when they burned my skin on the way out, I didn't stress or cry, as I had just nights before. I had accepted my lot. My colon was going to be taken, but looking on the bright side...I had hope of being renewed.
That's just it - it helps when you are at peace with the hand life deals you. You just have to constantly remind yourself that you are strong enough to strategically play those cards and win. I have a couple of friends (and even a family member) who are being faced with this same surgery and though I can be a living breathing example of a successful outcome, I would NEVER tell someone that because it worked out for me, that they should also agree to it. This is one decision that no one should make for you...because YOU will forever live with the outcome.
"Fill-up" and I are living the good life these days. He knows I don't love him (and never will), and he doesn't love me either but we have agreed that we need each other to survive so we'll be cordial ;-) Since I can eat pretty much whatever I want, Fill-up and I are gonna live it up this weekend: Stoma Style!
If you are living with a stoma, or had a life-changing surgery, do you remember the date?