Photo by Diego PH on Unsplash

Photo by Diego PH on Unsplash

“Trust me,” he said, “When you wake up after surgery, that will be the first day of the rest of your life.” My surgeon assured me as I looked back and forth between him and my husband, who kept his head down and picked at his fingernails. All I could do in that moment was nod as I tried to process what he just told me.

I never had any health issues growing up. I experienced a  handful of colds, two cases of food poisoning, and the removal of my wisdom teeth.  So when I learned that my entire colon (yes all 6 feet of it) was inflamed and close to exploding and that all of the biologics, immunosuppressive medicines, and steroids weren’t helping and that surgery was my only chance of survival; it broke me. Not to mention, I had a 10-month-old baby at the time and I really wanted to see her first birthday.

I had my doubts going into surgery. Would this work? Once it’s out, there is no turning back, they can’t put it back in. At the end of the day, what did I have to lose? It was made clear to me, take out your colon or risk dying. When I was first diagnosed with Ulcerative Colitis, I knew exactly what would await me. I nearly lost my father 7 years ago to the same disease, but I never thought I would get it. So when I was told I had severe Ulcerative Colitis, I thought, if my father made it without surgery, so would I. Nobody wants to have surgery, and nobody wants to be confined to a bag. I was committed to try every medicine, every therapy, and every alternative option out there before resorting to surgery.

I read through the pamphlets my doctors gave me, I found lots of articles online, I even went so far as to follow other individuals on Instagram that I hunted down through the IBD community who had ostomies. There are many types of ostomies, the one that I was preparing to have is called an Ileostomy. This is where the surgeon takes the bottom of the small intestine, the ileum, and attaches it to the stoma through an opening outside the body. The ostomy bag is then used to collect the stool that passes through the small intestine. Prior to my surgery I believed if I educated myself enough, if I found a support group, if I talked to someone with an ostomy that I could process what my new life would be like. Maybe, just maybe, it would be less scary.

I met my first ostomate when I was getting iron transfusions. The nurse that was administering my IV was an ostomate. She heard about my upcoming surgery and decided to open up to me about her experience, what recovery was like, which foods to avoid, and even gave me her number to text her after the procedure. The saying, ‘you don’t get it until you get it’ could not be more true in this instance. While I can’t speak for everyone else, I can say that each person’s experience is unique, their reason for having an ostomy, their road to recovery, and their feelings afterward are all very different yet also equally valid. There is also something to be said about belonging to a community of people who have suffered and are now re-learning how to live again.

My surgeon was right; as soon as I woke up from surgery, I felt lighter. I felt the disease was gone, it was no longer weighing me down. As the days passed, I learned how to care for my ostomy. It was frustrating and hard at first. My nurses were kind and patient and allowed me to practice over and over again until I got comfortable with changing my ostomy bag and cleaning my stoma. When I finally sat down at home after coming back from my stay at the hospital, I started to realize that my life had only just begun. I could feed my daughter without interruption, which would normally mean rushing to the bathroom. I could carry a conversation without having abdominal cramps and nausea. I didn’t spend more than five (5) minutes in the bathroom at any given moment which was huge because I used to spend hours upon hours sitting on the toilet in agony and misery, hating my life.

I wish I knew then, what I know now. I wish I didn’t spend so many sleepless nights on the toilet. I wish I listened to my doctors who warned me after failing each biologic that maybe it was time for surgery. I wish I didn’t wait, and keep poisoning my body with drugs that clearly weren’t working. I wish I took out my diseased colon early on instead of suffering for an entire year before the decision was basically handed to me. But more than anything, I wish someone could have reassured me that everything was going to be okay.

Guest Blogger Dani!


How My Queer Identity Helps Me Survive IBD: A Blog for National Coming Out Day Empowering Herself and Others: Jessica’s Ostomy Story

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