How did you get your ostomy?

I have been asked this question many times. I am sure anyone else living with an ostomy has been asked this as well. Inflammatory Bowel Disease, Crohn’s disease, Ulcerative Colitis, cancer, and diverticulitis are all very common reasons for getting an ostomy. It can be either temporary or permanent.

My story is quite different.  I was born with a rare disease called  neonatal necrotizing enterocolitis.

“Wow, can you say that again, slower?” or “Wow, I’ve never heard of that!” Those are the responses I get when I tell people what I have. Most people have never heard of my disease. They don’t even think about someone having an ostomy for a reason other than IBD.

I’ve spent my whole life arguing that everyone’s story is different. Not everyone is stuck with a life altering illness in the middle of their life and suddenly must live with an ostomy. Not everyone can take medications to achieve remission from their symptoms. Not everyone has only their colon removed.

Being born with neonatal necrotizing enterocolitis meant that my intestines were dead and necrotic at birth. “Necrotizing” means damage and death of cells, “entero” refers to the intestine, and “colitis” means inflammation of the colon.

It is not clear what causes NEC, but it is thought that the intestinal tissues are somehow weakened by too little oxygen or blood flow. Premature babies are primarily at risk, being underdeveloped and having low oxygen flow. Babies who have had a difficult delivery or lowered oxygen levels are at an increased risk for developing NEC which was the case for me.

I was full-term and not a high- risk pregnancy. I went into respiratory distress just before my birth resulting in an emergency c-section. It is estimated that nearly 12% of infants born weighing less than 1500g will develop NEC, making it extremely rare. Among those infants, about 30% will not survive. It is the 8th leading cause of infant death.

The progression of my disease meant the damage to my intestines was irreversible, and I had surgery days after birth to remove mostly all of my intestines, place a central line, and a gastric feeding tube. I had a colostomy formed, that I still live with today. Since a large portion of my intestines were removed, I now live with short bowel syndrome. It is a condition characterized by the removal of three feet or more of small intestine. Instead of just having my colon or small intestine removed, I have one long string of a combination of intestine. That is a result of my surgeons trying to salvage whatever intestine was viable.

I consider myself lucky for surviving NEC, and for what my disease has given me. I’m proud to be a rarity, and I can show concerned mothers of afflicted infants that their child will be okay. I’m proud to be able to spread awareness for this rare and fatal disease that gave me my ostomy. I’ve only met two people in my life with the same disease as me, and their stories were very different than mine.

Everyone’s story is unique, different, and worth sharing. We are all stronger than what tried to weaken us, and we can use these experiences to inspire others. I love sharing my unique story with others and spreading awareness for both NEC and short bowel syndrome. I’m proud to be rare.

Do you have a rare disease? What makes your story unique?

Sources:

Gephart, Sheila M, et al. “Necrotizing Enterocolitis Risk: State of the Science.” Advances in Neonatal Care: Official Journal of the National Association of Neonatal Nurses, U.S. National Library of Medicine, Apr. 2012, www.ncbi.nlm.nih.gov/pmc/articles/PMC3357630/.

“Necrotizing Enterocolitis.” Stanford Children's Health - Lucile Packard Children's Hospital Stanford, www.stanfordchildrens.org/en/topic/default?id=necrotizing-enterocolitis-90-P02388.

By Chloe Moody