I want you to know something because I love you and you, unknowingly, hurt me. I can be careless, insensitive and unkind too. With my words, thoughts, and attitude. And my actions. I don’t want another person, like me, feeling sad, angry, shameful, or embarrassed, especially not a child or a teenager. Or a mother or father. Or anybody else.
I hope that I would rise up pretty quickly if it was my sister, friend, niece or mother you were talking about. I know I should defend myself, but it can be hard to do. Attention-drawing of the kind I dislike. Hot angry tears well up. They’re ready to fight, typically without gloves, and this can lead to an untranslated message. You remember the crying, not the words I was trying to say. I usually don’t like to solicit negative attention, in regards to Crohn’s disease. Or any health-related problem, really. It’s difficult to balance truthful explanations without adding too many hard-to-hear details.
I have the disease. It doesn’t have me. Complaining or whining can attract pity. No thanks. Writing has been helpful because people can read about some of the feelings that exist, the side effects of the disease. It is a disease that has taught me an infinite amount about myself, others and those who love me. Over the past seventeen years. I think it has made me more sensitive, compassionate, and understanding towards other people, too.
There is not a day that goes by that I forget that I have Crohn’s disease. I rarely have to take medicines, but I have had to be in the hospital a lot, mainly for surgeries. It is a disease that affects each individual person in a different, life-altering way. Most of us can walk around with no one even knowing we are “sick.” This can be good, and also really hard. Our foreheads aren’t tattooed. We look healthy, most of the time. We may be some of the most amazing magicians you never knew that you met. That’s why I thought I should try to reveal something to you that is very close to, well, my belly button.
I have an ileostomy. Pronounced “ill-e-oz-toe-me.” It’s a bag. On the outside of my body. It does what your large intestine and rectum, your pooping parts, do for you. Something you most likely take for granted, like breathing. Unfortunately, that’s what we tend to do. We often take the things that come so effortlessly, and naturally for granted. Until they stop working the right way. Your body works. You don’t have to worry too much, I assume, about taking care of your guts. I do have to worry about and take care of the part of my small intestine that’s coming out of my body, my stoma. It’s “my bag.”
I have worked in the hospital setting for over ten years. Most people I work with have no idea what I have endured, in regards to the countless surgeries, for Crohn’s disease. I have witnessed some really cruel faces, attitudes and unkind words being said in regards to irritable bowel diseases and specifically, ostomy bags. There is an unfair and painful stigma that surrounds them. It’s no surprise that when I try to talk with women who have no quality of life and desperately need surgery, they are terrified and do not want to get a bag. Ever.
I have had an ostomy on and off again over the past seventeen years. You can learn an awful lot about other people’s insecurities when you try to be honest. Lose the shame. Empower yourself. I’ve had people say the most ignorant, and painful things to me. “Does your husband still want to have sex with you?” Wow. And yes, all of the time. Although, I don’t remember ever talking to you about your sex life. I’ve also had friends who have wanted to see, learn more or who just make me feel pretty damn proud and awesome. One of the single most irritating things is when people use a rude, snarky tone and call it a “shit bag.”
I work in a children’s hospital as a child life specialist. I help explain procedures to kids and families, normalize the hospital environment through providing play, and provide distraction and support throughout the hospital admission, in a nutshell. One day, I walked up to two nurses sitting outside of a patient care area. I had an intern who was shadowing me to better learn the role of a child life specialist. One of the tasks assigned to her was to ask nurses to define medical terms. She asked these two nurses if they would help define a few medical terms. She gave them one that stumped them a little, they weren’t too familiar with it due to not working with that specific population. Next, she asked them to define “ostomy bag.” Both of these nurses looked at each other, smirked a little and in unison stated, “Shit bag.” My heart dropped. My stomach flipped. And my impressionable intern wrote down, “shit bag” in her notebook. I felt like a coward. I felt ashamed. I don’t want to feel that feeling anymore.
I wrote the following piece as a response to their insensitivity. I would want to know if I hurt someone, unknowingly. Really, what would be ideal is if everybody would have the same reaction that my family and close friends have. Specifically my three young children. It’s normal. Not a big deal. It’s all that they know. And they have always loved me wholeheartedly. So, here it is. My (lengthy)response to my bag being called a “shit bag.”
It’s not called a “shit bag.” Well, you can call it what you want to. That is, when you experience all of the pain, frustration, shame and uncertainty that comes along with having one. When your life gets altered for more than a few minutes or hours. Then, you get that small luxury. The tiny luxury of calling something that you actually have, on your body, whatever you want. You do know that this is not the result of an elective surgery, right? You should. Because when I was dying as a strong-willed, stubborn 18-year-old, you are the exact person that I feared. An insensitive, all-knowing, ignorant jerk. I get it. If I were your wife, your best friend, your sister, your daughter or even your mom, you would know better than to call it a “shit bag.” You would know to walk cautiously, talk sensitively and act sympathetically. You would remember how I looked when I couldn’t eat for weeks. When I had no quality of life. You would remember how I lost my spark, my smile, and my laugh in that hospital room. And you would have done anything to take away some of my pain. You would remember all that I have been through, all of these years. Seventeen years, to be exact. And you would be proud.
People say, “you always have a choice.” Well, I haven’t felt that way when it comes to this disease. Or maybe I’ve been forced to answer a multiple choice question when all I wanted to do was fill in the blank. Write my own answer. Miraculously be healed from my guts beating themselves up. Okay, so maybe I did have a choice. Die. Or live with an ileostomy. Or on another occasion, have shit coming out of my vagina. Or have a bag. A “saved-my-life” bag. That’s really what it has done. I didn’t bleed out, like others who waited too long. And as a result, died. Yes, died. You probably didn’t know that because I didn’t want to tell you. I didn’t want to console you. You haven’t earned my trust. If I want to call it a “shit bag,” then I can. And I do sometimes. The thing is, I can call it whatever I damn-well please because I have earned that right. Through failed surgery after failed surgery after failed surgery. And all of the painful recoveries too.
I have tried to be honest and open with friends and family who I value, love and trust. When people say unkind, hurtful, shame-promoting things, it causes me to put up a few walls or privacy fences. Outsiders. You can see in, but not all the way. You may hear the laughter and even smell the smoke from the grill. But, you have to earn your way into my backyard. All you have to do is genuinely care, show a little sympathy, not to be confused with pity, and bring your curiosity. I welcome your questions, your thoughts, and your opinions if they come from a place of love. Please don’t stare at me that way when I tell you. Don’t let your eyes go from looking at mine to looking below my waist. I can hide a lot of things, if I want to. Especially from people like you. I do it everyday. Because, in this world, we can be cruel and unkind and insensitive to people, especially when we don’t know what they have endured. Or we don’t understand. Or we don’t choose to understand. Or we don’t care. Just imagine me as your sister, your mother, your wife, or your favorite person in the whole world. Then, think what you would say and how you would say it.
I haven’t always been so confident and loud, but something changed in me. I rather unexpectedly and miraculously gave birth to these three precious, kind-hearted and fully accepting little sons. They have only known me one way, with an ileostomy, a bag. No other way. I am their mom who has loved them from the first glimpse of the positive pregnancy tests. I’m pretty sure that they would have accepted me, from birth, had a looked like a dump truck, a wicked witch, or a strange monster. Afterall, it’s not what you look like, it’s how you love. Kids get that, and they live that way, until we, adults, change them. I love my boys in a most enormous, breath-taking, go-to-great-lengths-to-protect them sort of way. They think I am pretty awesome, and that’s a big deal. The biggest deal. They say things bluntly, honestly, matter-of-factly, and innocently, like:
“Boys have a penis. Girls have a bag.”
I want to laugh and cry at the same time. It’s normal, universal to them. They don’t care. They don’t judge. They are patient and compassionate with me. They never have made me feel ashamed of something I didn’t really choose to have. They love me to the moon and back every single day of the week. And to all of the stars too. They accept me for who I am, not what I look like on the outside. They make me so proud that I made the choice to live. Truly live. With a bag.
It can be hard sometimes. Some days, I hate this bag. I blame this bag. I resent this bag. Some moments. Those moments don’t begin to compare to the gratitude, joy and love I embrace the rest of the time. Life is completely worth it. And if I can encourage you to think of a little boy’s mama or a friend that you love, before you speak and beg you to choose your words more gently, than it is worth it for me to put myself out there. My whole self. I am confidant that there are scared and insecure girls, women, boys and men out there. Wondering, hoping, praying that they will be accepted. Bag and all.
I happen to know these three spunky blonde-haired boys who would set you straight pretty fast if you tried to say any thing negative about their mama. Or her bag. And they’re only 6, 6, and 3 years old. You don’t want to get their daddy involved either. He happens to like me a lot too. He may just think I’m the most beautiful woman, inside and out, that he’s ever known. Bag or not.
You see, it’s never been about what I look like on the outside to the people who really matter. My dad sat next to me on my hospital bed and said it best when I felt completely defeated, exhausted and scared as an invincible teenager, “If somebody is not going to love you for having a bag, then that person doesn’t deserve to be a part of your life.”
I try to remind myself of this oddly disguised gift. A built-in people filtering system, installed numerous times by several of the kindest and smartest surgeons. It’s not Coach, Kate Spade or even Prada, it cost even more. I owe my life to this bag. I will have it forever. And most days, it’s for better. Not for worse. And even on those “worse” days, having people who care and authentically, whole-heartedly love me helps me get through. And reminds me that life will always, always be worth carrying an extra bag around.
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