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Fighting To Live Without an Ostomy Part 2

If you haven’t had a chance to read part 1 of this article, I highly encourage you to do so before continuing on.

In that article, I shared some of the emotions I was feeling as a teenager living with an ostomy. I also brought up the fact that the recent passing of an IBD friend who refused another ostomy surgery has made me think about this topic a lot.

Eye on the prize

To make a very long story short, I had undergone five operations in an attempt to continue to live with a kock pouch (a continent ileostomy). Even though each complication and set back was awful for me, I kept my eye on the prize. The prize being a life without a bag on my abdomen.

After pouch revision number five failed, I remember being in the ER with a GI trying to insert a tube in my stomach. It was the only way I could leave the hospital and have a little time to plan my next move. This gastroenterologist was someone I never met before and one who was obviously very well versed in the surgery I had. He continued to give me hope and offer other suggestions of things I could do to help myself. I honestly never met a GI like him and wondered where he had been all my life. This was a man who advocated for me when I was just a random patient. This was a doctor who understood how terrible it was for me to live with an ostomy and tried his best to keep my spirits up while he kept trying to insert the tube.

I was ready to give up

It was at this point where I realized how much timing played a role. While the GI caring for me was exceptional and someone I could definitely see myself trusting and wanting to work with, I was too run down by the time I met him. After five years of fighting for a life without an ostomy, I was beaten up.

I spent two months with the tube in my stomach while I tried to comprehend all that was happening. I was afraid, sad, frustrated and utterly lost.

But, there was one thing I did know: I couldn’t fight anymore.

Living with an ostomy

When I saw my surgeon and he asked me where I wanted to go from here, I told him I wanted to go back to living with an ostomy. After we spoke more in-depth about that decision, I had some “demands.” The first being, I needed to know exactly where my new stoma would be placed so I could make sure my incisions wouldn’t get in the way of the appliance sticking to my skin. I also needed his word that he would make my stoma stick out as much as possible since the more flush a stoma is to the skin, the more likely leaks will occur. He promised me he would arrange an ostomy nurse to help me find the right location and that he would do his best to make my stoma as long as feasible.

This was all roughly seven years ago and I remember it like it was yesterday. My dad told me I was like a “naive little soldier” fighting and fighting my way towards a life without an external appliance.

I bring this up because I want those of you who are struggling to accept life with a permanent ostomy to know that you are not alone. I can say for an absolute certainty that the only reason I have accepted my second ostomy was because I knew that I tried anything and everything possible. I also realize that I did luck out because I am still here. I am only alive today because of my ostomy.

I had been adamant

For those of you who have loved ones with inflammatory bowel disease (IBD) who are adamant about not having an ostomy, I understand how difficult it must be for you to comprehend. I understand why you, someone whose body isn’t going through so much turmoil and alterations, might unintentionally judge another for not being willing to accept life with an ostomy. And while you rationally make complete sense to me right now, I can tell you that if you talked to me years ago, I would have dismissed you as someone who “didn’t get it.” There would have been nothing you could have said to me to change my mind about doing everything to avoid living with a permanent ostomy.

As the anniversary of my second ostomy surgery rolls around, I ask that you not judge anyone for the choices they make. And please know that I will never judge any of you for the decisions you make about your own body. All I ask is that you keep an open mind and heart, re-evaluate your situation if needed, and do what is best for you. Only YOU know what that is.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.