My ostomy is something that happened to me, but it's not who I am

I don’t define my life by the bag taped to my abdomen.
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Doctoral degree, June 2012

Doctoral degree, June 2012

To set the scene: In 1977 I was diagnosed with Crohn's disease, age 18. The year is 1999...

My doctor enters the recovery room where I'm lying on a gurney still groggy from my colonoscopy and gently says, “Is your wife in the waiting room?” I nod yes and respond (with brain fog from the sedation), “Well, that doesn’t sound good… oh, and I wasn’t under for very long, was I?” He takes a deep breath, nods back, and quickly leaves the room to get my wife. When they return she looks concerned. We both turned to him, anxious to hear the findings.

The gurney is next to a window which overlooks part of West Philadelphia. He holds a slide up against the window to catch the streaming light and begins explaining in detail while pointing to lesions, tissue, and cloudy spots. His comprehension of the medical report is much more than I'll ever understand. Finally, I interrupt him, “So, what does all of this mean?” He smiles and calmly said, “Fair question. You're having recurring blockages and obstructions because the lining of your colon has collapsed." He tells us that the scope wasn't able to enter very far because it could've ruptured the intestinal wall. My colon has apparently become so damaged from the inflammatory bowel disease I've been fighting all these years and now the situation is life-threatening.

As I sat there and listened, I knew without question what was coming next. I knew I was about to face an outcome I'd spent the past two decades fearing might happen. I looked him square in the eye and asked if this meant surgery. He proceeded to explain that I had to see a colorectal surgeon immediately because my anus, rectum, and colon had to be removed to save my life. For the first time, the “possibility” of needing an ostomy has now become my reality. My head is swirling in a thousand directions and I'm doubting everything.

What about my job? What do I say to co-workers?

What can I do with an ostomy? What can’t I do with an ostomy?

How will I live with a stoma? Will this change my life?

Of course, it's going to change my life... but will it make my life better? 

And the toughest one... can I really even do this?

On a glacier in Alaska!

On a glacier in Alaska!

That was then, this is now. It's 2019 and I've had a permanent ileostomy for 20 years. In an effort to help others who are struggling with this outcome, I'd like to share why I'm so grateful for my ostomy.

1) It saved my life. 

This is self-explanatory, but honestly, I would not be alive today if it wasn't for an ostomy. An oncologist I met with after my surgery had no hesitation telling me this. The pathology showed aggressive cancer in my rectal tissue, so if surgery wasn't performed the tumor would've likely metastasized and I'd be terminal. 

2) It allowed me to connect with amazing people. 

I've become friends with many ostomates who have stories similar to mine. They've endured some of the toughest circumstances and are using those experiences to help other patients survive illness through ostomy surgery.

3) It helped me remember what's truly important. 

When you've been tested to the level of having your life nearly taken away by something outside your control, you tend to develop an ability to see through the garbage and learn to focus on who and what is truly important in life.

4) It made me resilient. 

Going through this experience has made me more confident and assured about who I am and my own body. You'd think an ostomy would do the opposite, but for me, this wasn’t going to be what took me down after surviving so much already! I was a badass heroine who fought and won the battle. The bag was a symbol of power... where's my cape?

5) It gave me back my life.

Has it always been rainbows and unicorns? Of course not. I've had my share of complications, obstructions from scar tissue, hernia surgery, and recurring bouts of Crohn's. This disease has wreaked havoc on my body. But without ostomy surgery, I would've never been able to do things like work, travel, see both of my nieces get married, legally marry my wife, welcome the birth of my great nephew, take care of my parents, and earn my doctorate.

Someone once asked me if I was a different person after going through this surgery. I thought for a moment and then realized, of course I'm different... physically and emotionally. But I don’t define my life by the bag taped to my abdomen. My ileostomy is as natural to me as my arm or leg. Taking care of my stoma is just like eating well for my health or exercising to stay fit. Ostomy surgery is something that happened to me, but it's not who I am.