by Katie Vyn

We live in a society that teaches us every day, in every moment, through words, images, and actions that living with a disability is the wrong thing to do. But guess what? I’m alive because of my ileostomy. It saved my life and continues to save it in every moment. Why? Because my digestive system could not function without it. And food is life.

What I went through before my emergency surgery was brutal. More about that another time. But I’ll tell you this now. Ultimately, it’s a choice of life or death and sometimes we only have a split second to make that crucial choice. Will we live or will we die? And what follows is a true fight. For me, that entailed an emergency surgery, recovering in ICU, enduring multiple complications – my life at the cliff’s edge – more recovery in rehab, and going home in a wheelchair (so thankful that these assistive devices exist). It took months – years really – for me to heal, gain weight, and recover my strength. It’s taken me the other half my life to grieve, and I still do at times. I grieve through living, celebrating, at times crying, holding onto who I am and this gift of life.

A long, deep scar runs from below my rib cage all the way down to several inches below my belly button. Scars from the staples that held me together following my colectomy speckle my belly on either side of this crevice. A distinct scar sits on the left side, just below the point of my rib cage, where they placed a j-tube to feed me when my body rejected food by mouth. Tiny scars on the side of my neck where they inserted an IV line to give me TPN. A scar at the crease between my upper leg and my pelvic region from when they placed a filter in my vein to save my life from a DVT and pulmonary embolisms (what got me to the hospital at the right time). I call my abdomen My Grand Canyon to remind myself that nature prunes itself. My surgery is not unnatural. My stoma is not ugly. It is part of who I am and it is beautiful.

You see, I had to counteract the attitude that surgery is wrong. Not for everyone, not in all cases, but wrong for me. Whew, that’s one that almost sent me to my grave at the young age of 25. I wanted to live. I wanted to do the right thing for myself, but the weight of that attitude, of what I had been taught, held me back at times. The message that I was unworthy, the threats at a young age throughout my childhood into my young adulthood, I fought those every day. I tried medicine, what little was available at that time. Prednisone. Not a lasting treatment. I tried diet therapies, enemas… But I fought too long before surrendering to what I needed. So I implore you, if you know you need help, it’s time to ask the people you trust most.

When I first started sharing my story of living with an ileostomy, the messages were mixed – very clear at times, and sometimes subtle. Why would anyone want to share that? Go off with your bad self! I could never do that. I would never want to live like that. I have an ostomy too! I’m new to this, please help. Then there’s the pity and condescension. But guess what? I don’t spend my time focused on degrading mindsets. Does it affect me? Sure. I have to take my time reflecting and cleansing, de-colonizing myself like anyone else does.

Knee jerk reactions to illness and disability are sometimes strong, and they say a lot about where a person is at. I think of it this way. If someone hates on my disability, they have a lot of growing to do. They might also be afraid for themselves – natural, but it’s not about them in that moment. If someone shames me or makes fun of me, they’d likely shame themselves, and maybe their child, brother, mother, or friend. It tells me more about how they’d handle it for themselves, than anything about me or my ostomy. And that’s sad. Because we’re all more connected than we think we are, and wanting to hurt someone else means that that person is fighting against the truth of existence. Hurting another person causes you harm yourself.

So I focus on positive messages and use language to transform my painful experiences. I love putting a spin on negative language to make it my own and transcend. My sister called my stoma a rosebud. That is probably one of my favorite ways to describe it. Sometimes stomas are described as looking like a tomato or a strawberry. That’s meant to be endearing and sweet, of course. No matter what we call it, it’s a vulnerable part of the body. And vulnerability is beautiful. It’s life in its essence. It’s part of my insides on the outside. It’s what saves my life every day – my hero, my angel, my magic, my miracle…my stoma.