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5 Reasons I Am Thankful for My Ileostomy

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Let me set the scene:

The doctor enters the post-op area of the procedure room where I am lying on the gurney a bit groggy from my colonoscopy and says, gently, “Is your wife in the waiting room?” I nod in the affirmative, and quietly say, despite the fog surrounding my brain from the medication, “Well, that doesn’t sound good… Oh, and I wasn’t under for very long, was I.” He takes a deep breath and responds with a nod of his head and quickly leaves to bring back my wife.  They return and she looks concerned. We both turn to him like two good school children waiting
to be schooled in the findings. The gurney is next to the window, which overlooks part of West Philadelphia and my doctor moves around the bed and holds the slides up to catch the light streaming through the window.

He starts talking and pointing to lesions and tissue and cloudy spots that mean so much more to him than they would ever mean to me, and I finally interrupt his report and say, “So, what does all of this mean?” He smiles and calmly says, “OK, fair question… you have been having recurring blockages and terrible obstructions because the lining of your colon has collapsed and I was not able to advance the scope very far into your system because I couldn’t risk rupturing the wall. After all of these years, your system is so diseased and so damaged, that the chronic disease you have fought for so long has now become life-threatening.”

I try to absorb this simple but powerful message and I know, without even asking, what this means and realize I now face the outcome I spent 22 years fearing might happen. I look him square in the eye and say, “So, this means we go in and remove my, what?” He proceeds to explain that I must see a surgeon immediately and that they will need to remove my anus, rectum and colon, possibly more of my small intestine in addition in order to get this disease under control and to save my life. So, for the first time in my life, the “possibility” of needing an ostomy has quickly become my reality.

We make an appointment with the surgeon he refers me to, the best ostomy surgeon around, and as we are driving home, my head is simultaneously swirling in a thousand directions. What about work; what do I say to people; how will I live with this; what can I do with an ostomy; what can’t I do with an ostomy; will this change my life; of course this will change my life but will this make my life better; and the toughest one, can I really even do this?

So, why would I be thankful for my ostomy, you might ask? My ostomy is totally a part of who I am and not something that happened “to” me, but something that has become a part of me! It is as natural a thing as my arm or leg and the care and maintenance are so ingrained that I truthfully don’t think about ever going to the bathroom any other way! So, in an effort to help people who are struggling with this possible outcome, let me recount why I am so thankful for my ileostomy.

1. It saved my life. It is self-explanatory, but if I hadn’t had my permanent ileostomy I would not be alive, today. That isn’t dramatic or hyperbole, but honesty. They found aggressive cancer in my rectal tissue pathology and, if they hadn’t done the surgery when they did, by the time it had been found it would have metastasized and I would have been terminal. The oncologist I saw following my surgery had no hesitation to tell me this and confirm that I would have died since I was only 40 at the time and aggressive cancer in a 40-year-old spreads like wildfire.

2. It gave me back my life. Look, has it all been rainbows and unicorns? Of course not, I had complications, follow-up surgeries because of obstructions from disease and scar tissue, a hernia surgery and recurring bouts of disease that wreaked havoc on my body, but without the original ostomy, I could have never done the things I have done in the last 18 years, like living, working, traveling, seeing my nieces get married, my great nieces grow up, legally marry my wife, await my new great nephew who is due in nine weeks, help take care of my parents as their lives were ending, as well as earn my doctorate.

3. It has allowed me to meet and connect with some of the most amazing people I know. I have become friends with other ostomates, most of who have stories just like mine. They are all hardworking advocates for survival, working/living/laughing daily through some of the toughest odds.

4. My ostomy helped me remember what is truly important in life. I know that sounds cheesy, like a bad greeting card, but when you are tested to the level of having your life threatened by something so outside of your control, you develop an ability to see through the garbage and learn to focus on who and what is truly important in life.

5. Lastly, it helped me to hone my already highly developed problem-solving skills and sense of resiliency. I have always been resilient, but this experience made me so much more confident and assured about who I am and my own body. Honestly, you would think it would do the opposite, but for me, I felt that I had survived so much already; this wasn’t going to be what took me down! I quickly learned to own my body and be OK if I saw that I felt the pouch getting puffy or had to change clothing because it no longer looked right with the bag… I realized that I was so much more than the sum of my parts and that, bag or no bag, I was a badass super heroine who fought and won a war that most people couldn’t even dream of fighting and that made me so confident, the bag was not powerful in a bad way… (Where is my cape?)

Someone once asked me if I was different, as a person, after all of these surgeries. I thought for a moment and realized, of course I am a different person, physically and emotionally for surviving these experiences, but I really don’t think about it day-to-day and just live my life as though I am exactly like everyone else, except that I live with a bag taped to my abdomen everyday, and I beat cancer
over 18 years ago.

Originally published: March 6, 2018
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