Kara O’Neil’s Story
Discovering Strength in the Struggle from J-Pouch to a Permanent Ostomy
If you asked me 20 years ago when I was in college if I thought I could be a strong ostomate, I would have just stared at you in shock. Strength and I were not the best of friends. In fact, it was one of the things I often questioned about myself. I had no idea what was something worth crying about.
That all changed three years ago when I was put to the test when I went from sudden rectal bleeding as a result of ulcerative colitis, to having to remove my colon in a matter of four months. During the next three years, I had four more operations from trying the j-pouch and failing, to finally getting a permanent ostomy just this past December.
Somewhere along the way, I found my strength. I dealt with major emotional and physical changes faster than I could even process. I had to adapt to a whole new way of life and a whole new way of looking at myself.
Somewhere along the way, I found my strength.
These three years have been incredibly hard. They have tested me in every way, broken me down to smithereens of myself, and caused me to question everything. The true strength that just suddenly overcomes you when you least expect it is something you don’t really understand until you are there and have no other choice. Life after that is forever changed.
Along the way, I started to feel strong. I was amazed by what both my body and my mind could accept and turn into a positive. I started to really take care of my physical health, and in the three years that I have been the sickest in my life, I became the most physically strong I have ever been by participating religiously in barre class. This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.
I literally stared death in the eye and won. It is hard to even write that today.
Feeling very alone, I stumbled across some ostomy bloggers one night while scouring the internet. Reading their patient stories blew my mind at the time, because I didn’t comprehend how they could just accept living with an ostomy. But all that changed and I began to understand when I was so sick that it was no longer a choice if I wanted to keep being a mommy. The decision to have a permanent ileostomy was the best choice I ever made.
This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.
I just had what I hope to be my final surgery and got my permanent ostomy on December 1, 2020. Since then, I have made some promises to myself. I want to be my absolute best version of myself now that I am able to really live again. I want to help as many people with IBD and facing the possibility of an ostomy as I can. I want them to see what I have come to see, that they too can use such an incredibly difficult period in their life to find their strength and their best version of themselves.
“God said to me, I am going to show you pain. And then you are going to help other people who are in pain because you understand it” (Lady Gaga).
Kara – You are awesome! Thanks for sharing your story! Much of your story reminded me of my own. I often think the emotional challenges were sometimes more difficult than the physical ones. So happy you are doing well and recognize how strong you are!!! You can do anything!!!
43 years ago my wonderful doctor informed me of my condition and I never for one minute knew what he was talking about. Told me what he had to do. Again, “what did he say” He did told me it went great and what I now had to do. IRRIGATE, so what did that mean. Had me pick a convenient time of day and off we went. Sent a nurse to my room and I asked what time of day she would be coming to do it. She said “no you do it”. thank God was with me. Here I am 43 years later “I DO IT” I have a support group I run (who would this would me coming from “what did he say he is doing to me”. the wonderful man passed away several years ago and I still miss him. YOU WILL BE FINE, I WILL HELP YOU.
Hi Mrs O’Neil
Hey I read your story. I really like it. You are the strongest person ever.