Bethany: Living with an Ostomy

Living after a bowel resection, or enterectomy, sounds daunting, but it doesn’t have to be. I have had many of these surgeries done, and I am still smiling and enjoying life, I promise.

An enterectomy removes a portion of the intestine, which can be the colon or the small bowel, and is a surgical procedure that is used to treat a wide variety of gastrointestinal issues, diseases, and cancers. This procedure is one of the most common gastrointestinal surgeries performed, and therefore, there are many patients that have experiences with life after this type of surgery.

My name is Bethany and I have struggled with GI issues for most of my life. I am going to share two short examples of my experiences with bowel resection in this post. My first enterectomy removed all my colon and left me with an ileostomy, which is a portion of the small bowel that pokes outside of the abdomen in an ostomy. I underwent this emergency surgery due to a volvulus, twisting of the large intestine that caused my colon to perforate. I lost all of my large intestine because the twisting caused the loss of blood to the tissue and it was damaged, or dead, at the time of surgery.

When I became fully aware of my situation, days after surgery, I was still in the hospital and I was mortified. My surgery was followed by a bout of depression and my unwillingness to get out of bed as I struggled to accept my new anatomy.

At the time I was living a great life, had the job of my dreams, living an active life running, biking, working out, going to the theater, hanging out with friends; I was always on the go. After my colectomy, I had a piece of my small intestine poking out my side, covered by a bag to catch all of my poop. I just wanted to hide, forever. But soon I learned about other people with ostomies that led seemingly normal lives. With the help of family and friends, I began to piece together my new life. After a period of adjustment, I did make it back to running, gym time, dinners with friends, and an active fulfilling life.

During this phase, experimenting with different ostomy bags and products was revolutionary for me. Different manufactures adhesives are different, some stuck better than others. Some allowed me some warning if there was a leak. Some were less plastic-like and made less noise when I moved. After months of experimenting and not losing hope, I did find a system of products that worked for me.

So, I encourage new ostomy patients to above all, keep hope. Secondly, be patient with yourself, the adjustment takes time. Lastly, keep researching and looking for products and solutions to fit your life. Once I did that, having an ostomy was just another part of my life.

The second bowel resection I encountered was years later, after my underlying conditions had evolved to the point of needing to have my small intestine removed to be able to be healthy. This was very different experience from my first ostomy because the output was more liquid and more constant, when I ate or drank it came running out minutes later. I had to wear a bigger, high output, ostomy bag and connect it to a drainage bag I had to carry around with me most of the time. But the skill I had learned of researching, experimenting, and remaining hopeful proved very useful yet again. After several months, I have found a bag system that works, I have found a way to decorate my drainage tubes, and I have several ways to carry my drainage bag depending on what I am doing that day.

After all of that, I like to think I lead a pretty extraordinary normal life. While I have to do somethings a little different, like going for a bike ride, I can still go and enjoy myself. For most things there are solutions that allow me to live the life I want to live. Without my enterectomies I would be miserable and sick, instead, I am happy and fulfilled. Life after multiple bowel resections has been good for me.