“Hi I am Marisa and I…”

I believe I have mentioned before on this blog that I have avoided the word ostomy and ostomate for quite a while. When I had my first ileostomy (from the ages of 16-19), the only people who knew about it were my family and I named my bag “BB”, short for belly butt.  Occasionally the term ostomy would slip out of my parents’ mouths but for the most part, the appliance on my stomach was always referred to as either the “bag” or BB.

I remember telling my mom one afternoon after she brought up going with me to a local ostomy support group that I didn’t think I could stand up and say “Hi I’m Marisa and I am an ostomate.” It made me realize that doing that would be, in essence, like admitting to myself that I had a problem of some sort. I was clearly not even close to reaching the stage of acceptance at that point so to me, this thing on my stomach was some type of problem that I wasn’t ready to face yet. Thus, the reason I never went to any ostomy support groups when I was younger.

“There are some things people don’t admit because they don’t like the way it sounds.” – SATC

This quote is from one of my favorite shows, Sex and the City, obviously taken very out of context but I found it to be so fitting in this case. I never admitted that I had an ostomy because I didn’t like the way it sounded and until pretty recently I have come to the realization that it was because I looked at it as a problem, as a deformity, as an issue, as something that was “wrong” with me.

But the reality is that that couldn’t be farther from the truth. This bag is allowing me to live. This thing on my stomach that I once did everything in my power to avoid has actually (knock on wood) given me my life back to a large degree. I no longer look at this ileostomy as a problem, I look at it as the solution.

It took me a long time to get here. I was 16 years old when I made the decision to get rid of my Jpouch. It was one of the hardest decisions but I do take comfort that I went against the advice of one of the most premiere surgeons in Manhattan and I ended up saving myself from at least two more years of suffering. I also do take an enormous amount of comfort that I fought like a madwoman (some might say too hard) to do what I knew what was best for me.

Even though I ended up back here with an ileostomy. Because it had to happen this way. It had to happen this way for me to be able to proudly be able to now be able to say

Hi, my name is Marisa Troy and I am an ostomate.

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  • Jodi

    you are amazing and strong. So glad you have come to this place. You are an inspiration for all.

  • val0525

    So Proud of you, Marisa!!!!

  • Sherri

    In many ways this could be the most powerful of all of your blogs…”Hi, I’m Sherri, the Mother of Marisa, who is beautiful, smart, loving, compassionate, sensitive, organized, strongwilled, ect etc etc…oh and yeah…she is an Ostomate…just one another thing about this complete person…”. ..I love you…<3

  • val0525

    Agree with Sherri 100%

  • Linda Kriger

    Hi Marisa,

    I enjoy reading your blog and I’m interested in speaking with you.

    I’m a former medical writer for the Philadelphia Inquirer and am now a freelance writer. I’m working on a book about the social and emotional impact of Crohn’s and Ulcerative Colitis on the lives of young people who were diagnosed up to age 25 as well as their caregivers and significant others. I have a chapter on people with ostomies and I would like to speak with you about the circumstances that led up to your surgery and your internal process in adapting to it. It’s clear you’ve done a lot of thinking about this.

    I decided to write this book based on personal experience. I was diagnosed with ulcerative colitis when I was 16. My colon was removed in 2000. During my years with the disease, I had many issues around it: body image, friendships, relationships, who do I tell and when do I stay silent, how do I talk about rectal bleeding and the urgency to get to a bathroom. I now live with a J pouch and want to contribute to the conversation so that patients, parents, siblings and significant others can see the variety of ways others have navigated the ups and downs of IBD at different stages of early life.

    I hope that you’re interested in helping with this book. I’m based in Philadelphia, PA. If you are interested, you can contact me at Linwitz1012@gmail.com or by phone: 215-620-0045.

    Warm regards,
    Linda Kriger