Fighting To Live Without an Ostomy Part 1

The anniversary of my second ostomy surgery is coming up and has me doing a lot of thinking. I also recently found out an old friend of mine who I met on Jpouch.org way back in the day had passed away. Our last conversation was about how she just couldn’t go back to having an ostomy. For any of you out there who may be struggling with the possibility of needing a permanent ostomy, I want you to know how much I understand the mental anguish you are feeling. For any of you reading this who have a loved one in this position, I hope that sharing my experiences might help you to understand him/her a little better.

In this part 1, I want to give a little background on my journey.

So, here goes...

Prior to my second ostomy surgery, I had already undergone 13 open abdominal operations for my Inflammatory Bowel Disease. Some of those surgeries were because I knew I needed to try anything and everything to avoid having an ostomy for the rest of my life. I already lived with a temporary ileostomy as a teenager and became so, so depressed because of it.

It was supposed to be tempoary

Thinking back now, the fact that it was made to be temporary might have played a role in how much I despised living with an ostomy. Or, maybe it was because of my age. Point being, there were a lot of reasons why I tried so hard to find another type of procedure that would allow me to live without needing an ostomy appliance.

I was so hopeful

I vividly remember speaking to my surgeon prior to trying another type of pouch that would allow me to live without an external appliance. He told me that the pouch could be revised over and over again, if I chose. I know he was trying to give me hope and he did! So much hope!

I had been fighting for this surgery for two years and was so ecstatic to begin my life without an ostomy appliance. In fact, I was only mentally able to begin my first semester of college because I knew that this body, my body, wouldn’t be “forever.” I was able to look toward the future more than ever. I was actually happy for the first time in years.

How many times can a pouch be re-created?

When my colorectal surgeon told me that the pouch could be re-done if it didn’t work out, I went on to ask him just how many times it could be re-created. I wanted and needed to know that the ball was in my court. I had already lost so much in such a short amount of time that I craved control over my life and body more than anything.

His response to me was “I have never told a patient that I won’t revise their pouch. It has always been my patients decision to go back to a traditional ileostomy.”

Still hopeful, but I eventually had enough

This filled me with hope even more! To hear that my doctor wouldn’t get in the way of me doing what I wanted with my body was music to my ears. Prior to this surgeon entering my life, I felt like everyone was making decisions for me. While I rationally knew a lot of it was out of anyone’s control, I also didn’t know how to mentally handle it all.

I remember smiling at my surgeon while thinking that all of his other patients must not have been committed to life without an ostomy. So, at the age of 19, I began my journey towards a better, appliance-free quality of life. And at the age of 24, I told him I had enough.

Read part 2 where I briefly explain what transpired during my quest to live my life without an ostomy and some of my thoughts/feelings about those who continue down this long and difficult road.