My Ostomy Story

By Carol Billian

I only know my story because my family told me. I was in a coma after suffering an abdominal aortic aneurysm, which caused my colon to rupture. I was in septic shock and multi-organ failure. Doctors performed an emergency ileostomy, and told my family on numerous occasions they were not sure I would survive.

After being in the ICU for 35 days, on a mechanical ventilator, and hospitalized for four months, I was finally discharged after completing a cycle of intensive physical therapy. At discharge, I weighed 69 pounds. I had to move in with my Mom for two years, while I gained weight and she nursed me back to health.

Over the next two years, I would need four additional surgeries to revise my ileostomy, open heart surgery because of damage to my heart from the sepsis, and ultimately a surgery to revise and relocate my ostomy. As of this writing, my weight has finally reached 95 pounds, which is still very underweight. It has been very difficult gaining because my body has difficulty absorbing nutrition.

I finally heard about UOAA, when I complained to my ostomy nurse there were no resources near me in Maryland to support ostomy patients. As a result of everything I endured, I vowed to go on and help other people. I am on social media platforms as @Carsueb, advocating for ostomy patients, and providing all kinds of facts, tips, and ways to handle your Ostomy. I also attend Ostomy Support groups to help people, and support groups for ICU Survivors, like myself.

An ostomy can truly be a lifesaver, as mine was. It was not the end of my life, but the start of a new, different life.

Peer support is mandatory for those with ostomies. I speak about my ostomy to everyone who will listen. It is a part of me, and no one should feel embarrassed or afraid to talk about their Ostomy. If more people spoke openly, doctors would not tell their patients an ostomy is a last resort. They would tell their patients, “Ostomy surgery will give you back your life, and will give you a great quality of life.” This is what I hope to accomplish in talking to Colorectal surgeons. I do not want them telling Crohn’s or UC patients an Ostomy is their last resort.

I’m on an Advisory Board at the University of Pittsburgh Medical Center, and local hospitals in Baltimore. These surgeons respect what I’m doing and have asked for my help.

I want to help prepare people for surgery. I want them go in with a positive outlook. I tell them what their body will look like after surgery, how they will feel, and what to expect. I show them my stoma. Knowledge is power. I don’t want them to feel afraid, so I am totally open.

An ostomy can truly be a lifesaver, as mine was. It was not the end of my life, but the start of a new, different life. I feel very lucky. I feel very blessed and feel I must tell my story to help as many people as I can. I am trying to normalize the talk about ostomies, and remove the stigma.