I’ve had Crohn’s disease for nearly twenty years. Even, at times, when the disease is in remission physically, it never lies dormant in my thoughts, emotions, or in my soul. It alters how I live my life in both the beautiful positive ways and the ugly and debilitating ways.
A chronic disease can be completely overwhelming at times. It can feel like being trapped in a prison cell. It never goes away. That piece of knowledge can haunt you and capture you. It can make you feel alienated, confused and depressed sometimes. It can feel like nobody truly understands. Maybe they don’t.
I’ve had to get creative and find ways to escape the lifelong sentence of my chronic disease. I wasn’t made to be imprisoned. I force myself to look outside, make a plan and know that I will do great things once I’m free. I find ways to sneak past the warden, who I’ve gotten to know pretty damn well over the years. It’s myself. No matter how many things in my body get scarred, altered, rearranged, or broken, I will forever hold the key to my freedom. Resilience, perseverance, humor, faith and hope help me dig the tunnel out. Sometimes, I force myself to follow the tiniest glimpse of light.
Healing is an ongoing process.
Healing is acknowledging my fears but not inviting them in for dinner. Healing is exterminating shame. Healing is letting myself feel the weight of it all: the unfairness, pain, loss, anger, and sadness. Healing is sharing my story and listening to other’s stories. Healing is giving myself the same extraordinary compassion I so freely give to others. Healing is forgiveness. Healing is changing, growing and evolving into a different person. Healing is allowing the hundreds of disease-related experiences to affect me. Healing is granting myself the permission to be different. Healing is acceptance.
Healing is always searching. Healing is often found in helping others. Healing is possessing a willingness to go back the opposite way through the tunnel I’ve dug, back to the darkness, to the prison cell of another. Healing is holding another’s hand, looking into another’s eyes. Healing is seeing a glimpse of myself in a hurting child, a lonely mother and a dependent elderly patient.
Healing is a gift that I open over and over again throughout my journey.
Healing is finding and seeing the beauty in the closing of wounds or watching the water run over the bright red flesh sutured outside of my abdomen. Healing is standing outside and staring up at the mesmerizing flight patterns of the barn sparrows. Healing is hearing my children’s laughter, holding their hands and answering their innocent questions.
Healing is my husband’s relentless, supportive, unconditional proud love for me. Healing is loving him.
Healing is everywhere.
Healing is found in accepting encouragement, love, support, bear hugs and help from those who surround me.
Dammed if you do, damned if you don’t. I can start my own IV. Pack and unpack my wounds. Irrigate and try to unclog my own small intestine. I can do a lot of hard, gross medical stuff. I couldn’t a long time ago, not at first, but I had to learn how to deal with the chronic and post-surgical crap. When it didn’t all go away. Because I didn’t want to keep needing others, partly because it’s hard to be strong sometimes. And it’s embarrassing. It’s a tricky art predicting and accounting for the feelings of those you love so much. It’s hard to be the reason they’re sad, frustrated or pissed. It’s hard to carry the weight or handle their sympathetic reactions when you’re feeling pretty weighed down. You know it hurts them. To see you sick, and not yourself. Laying down. Not laughing, and sometimes with the tubes coming out everywhere. Filling bags with fluids.
I can get inside my own head most times and work things out with this disease and God. But it’s hard to work things out for good inside the heads of those who want to take it all away. Make it disappear. Who would take on the shit for a day. A week. Or even longer, maybe even forever, to give me a break. Though I would never let them. I love them too much. And I’ve gotten to be pretty good at dealing with hard stuff. I know that it’s shaped me for better too. Most days.
I was trying to play soccer with my boys today. On an unseasonably warm December day. I was hurting. But we were having so much fun. Laughing. High fiving each other, up-high and down-low. My boys’ ecstatic reaction to my unexpected backwards kick into the goal made me feel like a soccer magician. Even though I’m not. The sun began setting, painting the sky a million shades of beautiful. I made my boys pose for a picture because it was unbelievably spectacular. Maybe I would want this picture, this memory captured of the fun we had. And the Kansas sunsets behind 69 Hiway are just the best.
My boys begged to stay. “Please.” Times three. I didn’t want to leave. I was hurting pretty bad when I ran. I told them we needed to walk home so I could go to the bathroom. They asked why I couldn’t just go in the woods like them. My best response was, “it’s not that easy. I don’t have a penis.” It kind of worked, along with the promise of a drink and snacks. My kids will play forever without food or a drink if they’re having a good time. They have some secret energy reserve or an auto-pilot play mode switch in their brains.
When you’ve been the center of unwanted attention or altered other’s plans too many times because of a disease you didn’t ask for, you try to tough things out. Grin and bear it. Or just get silent and focus on others around you. Until the pain gets better or gets to be too much. You don’t want to be short-fused or unkind like a hurt animal, growling or snapping to protect yourself. You just want to feel normal. You just want others to know how to shake up the perfect magic cocktail of sympathy, positivity, strength and compassion. With maybe a squeeze of resilience. And add some humor around the rim of the glass. It’s a tough order to fill.
Tonight, I hurt. I couldn’t get past it. I wanted to help put my boys to bed. All of them. I wanted to because I’m worried. I fear that I may have to vanish to the hospital in the night. When I’m feeling this way. Ironically, in these moments, I crave the simple, the things that on other days can seem exhausting and irritating. Same ole. Bedtime rituals. Boys fighting over who gets to sit next to me on this side and that. Whose book I will read first. After they brush their teeth. “Have you brushed your teeth, yet?” The little, yet meaningful and habitual love expressions that my boys spill. All over the place. For me, their humbled and grateful hurting mama.
I’m worried because it’s not a good time to go to the hospital. I have to help with a preschool cookie party tomorrow. And our house is a complete disaster from redoing our floors. Man. Oh man. There’s SO much laundry. SO much. And the toilets aren’t clean.
That’s one of the hardest things about chronic illness. It doesn’t seem to ever strike at a “good time.” Because there never is a good time. It’s always the untimely and uninvited house guest. Knock. Knock. Barge in. There’s never a good time to be separated from your family by an illness and the distance to the nearest hospital. There’s never a good time to miss out on any precious moments that you didn’t choose to miss out on. No matter how big or small. There’s never a good time to have an NG tube shoved up your nose and down your throat. If I could put one down myself I would. I think my gag reflex is too strong. And I’m too weak. There are things that I just can’t do. Maybe one of my nursing friends could teach my husband how to do it. Then, I wouldn’t have to lay here wondering if I need one. Or if I need to go to the hospital. If I start throwing up.
I cleaned the toilet in case I need to throw up in it. I even put some eucalyptus oil. I started a load of the boys laundry. It’s my way of jinxing a trip to the hospital. It makes me feel a little better that they may have some pants to wear to school in the morning. They just have to be moved to the dryer.
Hopefully, I will be there to help get them ready for school. And I will have a different attitude than I did yesterday. An “I get to….”do it instead of a “I have to….” do it attitude. After all, I could be sitting in a hospital room longing to be home. No matter what this disease takes away, I want it to know that it always gives me more. It helps me see what matters. Often, right in front of my face. And most of the time, it pushes me to appreciate and cherish, not complain about the routine. Habitual. Because really its the best, the most important. The simple and beautifully boring things that most days I have the privelege of doing.
I don’t want this fuckin bag anymore. This is today, this moment. This is not everyday. But right now it’s too much. I’m doing my best and trying my hardest to not feel deflated. Defeated. Angry. And mostly sad. I’ve tried doing nice stuff for other people. Feeble efforts to shift my stinking thinking outside of me. I know that I’ve got to get past myself. But this is the thing. Between the sweeping up the mess of a stolen purse and stolen car. And the feelings of violation of thieves rifling through my stuff and leaving certain unimportant things that don’t matter, like tampons and essential oil, but taking pictures, important information, and everything else..And the needing to change my bag, and the being on my period, I cracked. I was already fragile. And I broke. It’s too much. Thanks for the tampons, you assholes. I’m sorry they bothered you being in my purse. Perfect timing on returning those a week later.
It’s hard managing a chronic invisible illness some days. And today is one of them. It’s hard to drop kids off at school, shower, get ready and hope that my thinking, sensitivity and coping gets better. It’s hard to accept the reality. Chronic. Always. Never ending. Sometimes, I just need to get pissed, say some cuss words. Maybe take some glass bottles to the recycling center.
Let. It. Out. Exhale. Exhale. Oh wait. Breathe in again.
Then, move on.
My husband tells me that going through this has made me incredibly mature. He says that if I died, he would try to find a woman who has endured a lot. So she would have perspective. And so that she would not worry so much about some of the small things. It’s really a gigantic compliment, but I would just rather be immature today. Diseases free. I just want to magically take away all of this. Poof. All of it. I don’t want to be in the bathroom anymore. Or in the waiting room. Or in the many “-ologists'” offices. I don’t want to be on the phone reordering insurance cards, freezing accounts or talking to a detective.
Since I can’t make it all go away, I will do one small thing at a time. Because I have to. It’s not one day at a time. Sometimes, it’s one minute at a time. Just those little bitty off-balance baby steps. Wobble. Wobble. Fall. Cry on the ground. Then, push myself back up. I will take a shower, all the while crying, lamenting and praying to the God who knows me best. And yet, still loves me the most. My hands ache from gripping onto the faith that continues to strengthen me and fill me in my weakest, emptiest times. I will take enormous comfort in knowing that Jesus hurt too. And that he loved intensely on people just like me. And He still does. Thankfully, I believe in a God that cares deeply and wants me out of the bathroom too. I believe in a God that places people outside of my door who help me laugh, who help me get out. Who tell me I have snot on my face. And then help wipe the snot from my face. Or hand me a kleenex. And they love on me in a crazy, relentless way. And because I truly believe all of this, I will keep walking wobbly, strongly, awkwardly, and often, with the support of those who love me. I will always share my struggles and the tiny, but oh, so mighty victories too. Like getting out of the bathroom today. Getting dressed. Moving forward. Thank the Lord. Who knew? It’s a beautiful day out.
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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I hate you. You cause me to be the person I dislike the most. An angry, pessimistic, complaining, hopeless and defeated person. You draw attention of the worst kind. Unwelcoming, invading, and uninvited attention. The kind that I don’t want. You’re always there. You never go away. You drag me away from bachelorette parties, weddings and funerals. I hate thinking about you. I hate being stuck naked in the bathroom with you. Countless hours in hundreds of different bathrooms I have waited. On you.
The world does not stop when I’m stuck in the bathroom. But it should. I don’t want to miss out on moments, stories, memories and fun because of you. Sometimes, I would do just about anything to just be normal. Whatever that even is. Oh, how I took “being normal” for granted for eighteen years. It’s the most trite but sometimes most true saying, “you don’t know what you’ve got until it’s gone.” So, now that I know, can I have it back? I promise to remember how much I despise you. I promise to remember how many times your existence altered my plans. I promise to remember every painful detail of every moment when things went wrong. All because of you.
My husband read the above paragraphs and said “I feel sorry for your disease. You’re being a bully to it.” Maybe I am. It bullies me from time to time too. Maybe it’s hard to turn the cheek some times. Sometimes, I want to hurt it’s feelings. Cause it pain, discomfort, uneasiness. I can’t be happy and optimistic all the time, you know? That’s absurd. Someone, no some disease, knocked my half-full glass over. And guess what? I’m the one cleaning up the mess. That’s right, with a piss-poor attitude because sometimes I let myself be angry, grouchy, mad, sad, and then angry again. Once I talk about it, cry about it and then even laugh about it, then I can get over it and move past it. Nobody likes to be around a potentially volatile ready-to-erupt volcano. That can be hot and dangerous. Messy and a little scary. It’s much better to be a shaken-up pop can, way less of a disaster. And this disease can shake me up something fierce. Like an eight year old boy with a vengeance kind of shaken-up soda can. After I open up, spew a little, then I can finally get out of the bathroom. Ughh. I hate it in there anyways.
In my post-bullying disease episode, I feel so bad, like I need to apologize… to my disease. I mean it. You know, thank it for all of the valuable life lessons it’s taught me, unintentionally. I’m like the student who shows up to the wrong class, but stays anyways. I don’t know, perhaps, because I like the teacher. Or maybe because I’m embarrassed, I was already late and I don’t want to leave mid-lecture. Ackkk. So, now, I’m stuck in the wrong class, but I’m learning so much. I shouldn’t be here. But, I am. So, I should start taking notes. What am I even talking about? I get going sometimes with those analogies and lose myself.
In my guilt-ridden state, I suppose I should recognize the many kind, beautiful, generous and helpful people who brought tears to my eyes today because they cared. They wanted to help, not for money, but because they could. They had the resources, the skills, the compassion. And they truly cared. Most of them don’t even know me. So, okay, I take it all back. You, annoying disease that you are, have taught me to recognize the helpers, the lovers, the encouragers, the listeners. And so for all of the hours I’ve spent in the bathroom, the love that overflows when someone helps me feels like a volcano erupting. A volcano of confetti, sprinkles, pop rocks, flowers, and just pure love. That trumps the shit. Any day of the week. So, thank you. Just try not to be so annoying, okay?