OstomyLife Community

My Story of Becoming an Ostomate

OstomyLife Co-Moderator
10/10/18  4:00 PM PST

I’m often asked about my health – and my answers don’t tell my whole story.

Lately I’ve found myself dwelling on the questions people usually ask me regarding my ostomy. A lot of the questions I get come from people who are not ostomates and thus may not really know what to ask. I have answered many questions about my diagnosis, ostomy surgery, my life after surgery, and so on. While these answers to common questions may be helpful for a new ostomate, it leaves out important things that people may need to hear.

When people ask me about my diagnosis, ostomy surgery, and life after surgery, they aren’t asking about the toughest part – the time between onset, diagnosis, and considering an ostomy.

Before diagnosis, my symptoms essentially had no cause, and before ostomy-talk, there was no “end” in sight. This is the toughest part for me to tell people about. Therefore, I often allow it to be overlooked. At 18 years old I had diarrhea, fecal incontinence, and severe pain all the time. It felt that nobody could understand that. I felt that I was just wrong.

In light of the usual questions I get, a view of myself as an optimist is painted, as a person who took a raw deal and made the best of it. But that is not completely accurate:

I didn’t just get sick, end up with an ostomy and learn to make the best of it. I suffered. I suffered more than I could have imagined because that isn’t a thing you can understand unless you’ve been there. My happy-go-lucky outlook isn’t in my nature, it is a product of my experience and suffering. Of my having fecal incontinence at age 18.  Of not being able to dull my pain day in and day out for months on end. Of my body literally attacking itself in a battle that felt like it was a battle to the death.

This is the part that shaped me. Not the ostomy, not walking around with a bag on my belly, or adapting to my new reality, but the suffering. I became reliant on others as just walking was extremely painful because standing put too much pressure on my anus and caused painful spasms. This is the time new we need the most support and insight to know we are not alone.

My Feelings of Despair and Hopelessness…

Having not heard much about ostomies, the surgery didn’t occur to me and my doctors hadn’t mentioned it yet because they didn’t think I was “there” yet. Not having this possibility in mind made it worse because I didn’t have a possible “end” in sight. I thought I was just going to have to keep trying medications and suffering. There is no better word for my feelings at this time than hopeless.

When I paint myself as an optimist who is making the best of her ostomy, it isnt a forced view of my situation. Becoming an ostomate saved me from a life that wasn’t worth living.  It saved me from severe pain and suffering and missing out on everything around me.  This is my real story, my ostomy is the reason I am here today. This is the often overlooked and missed part that truly explains why I am who I am today. It is why I became a nurse and why I embrace life with an ostomy so much.

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