The Solitude of Crohn’s Disease
It’s been two weeks since my last MRI. In the last six months, I’ve had 2 MRIs, 1 CT Scan, 2 Colonoscopies, 1 Endoscopy, 5 Fecal Tests, and so many blood tests I can’t count. This MRI was a follow-up to see how the steroids I had been on for two months (Uceris) had been working on my Crohn’s Disease flare up. I went into the MRI terrified. It’s been a terrifying 6 months since I first went to the ER with the most gut-wrenching, stabbing, tearful pain I have ever had in my life. I’ve had a broken bone, a concussion, sciatica, tropical viral infections, and this topped the list. So now, as I was about to enter the MRI, I was filled with fear of what the results would be. Had the steroids worked? I knew they hadn’t because I was still in constant pain. On top of that, I’ve grown to abhor the incessant poking and prodding it all requires. Needles, IVs, antiseptic wipes, cotton balls, bandaids, arm tourniquets.
For this type of MRI, I was required to arrive an hour early so that I could imbibe a thick, chalky, slimy, lemon flavored fluid that would coat my GI tract so that they could image it better. I also had to fast 6 hours prior by not drinking or eating anything. While I’m drinking the fluid, which is specifically timed out — drink fluid, wait 15 minutes, drink small cup of water, drink fluid, wait 15 minutes, drink small cup of water, I was taken to have an X-Ray because I also started having mysterious inflammation in my tailbone for the past 2 weeks. It’s common for inflammation from Crohn’s to spread to joints and bones, which I’ve been experiencing relentlessly in random joints — even my pinky finger. Strange, I know.
Test, repeat, test, repeat. Disrobe, put hospital robes on, disrobe, put clothes on, do it again. And again. And again.
I’m ushered into the nurse’s station for the MRI. I disrobe, put on hospital robes, tuck my clothes in a hospital-issued plastic bag that I carry around with me.
Test, repeat, test, repeat. Disrobe, put hospital robes on, disrobe, put clothes on, do it again.
They shoot me up with glucosamine and some other substances, insert an IV into my arm which already has curiously tiny ball-like scars within the veins from the countless blood tests I’ve had over the past 6 months. A new nurse comes in and has a laugh with the other nurses as if I’m not there. It’s just their job, they deal with it like any other. It’s reasonable. She calls my name with a bright smile and brings me through the halls to the MRI room. I feel like a lost child being dragged from freezing cold hallway to freezing cold hallway looking for parents who seem to have abandoned me. I feel like my body has abandoned me. It’s given up. It’s all a lonely experience. She points to an empty locker room and directs me to drop my belongings off into an ambiguous locker. I lock it, take the key, hand it to her for safekeeping. I don’t care about any “stuff” right now anyway. Steal it all, take everything away, anything to stop me from going to the hospital, the labs, doctors’ visits nearly twice a week for over half a year.
She shows me upon entering that this MRI at least has headphones that I can listen to music with during the process as if that will make it less scary. They’re connected to speakers with long wide hollow plastic tubes. She asks what music I want. I whisper “classical.” She has it on Pandora’s “Zen” station. “That’ll do,” I tell myself as I nod silently to her. I sit on the bench that will eventually be drawn into the massive tube-like-donut-looking apparatus ready to engulf my body as she preps everything. She wipes the headphones with antiseptic wipes, covers them with sanitary disposable covers, wipes the IV tube she’ll hook up to me, wipes the emergency air ball I’ll soon hold in my right hand. Everything is sanitary. Clean. Alcohol-ridden.
The MRI is ticking its incessant deafening sound — CHK CHK CHK CHK CHK. It sounds like a jackhammer and feels like one pummeling my body incessantly. I can feel the vibrations of the CHK CHK CHK throughout my limbs, emanating into my brain. I lay down, head toward donut. She plugs a long cable into the IV in my arm, she places a ball in my hand that I am to squeeze in case of emergency, she gives me earplugs for the noise which don’t really help, she places the headphones on my head, she drapes a blanket over me which is really just a sheet that does nothing to keep me warm in this frigid room, and finally covers me with a hard plastic cover that I have no idea what does but seems to indicate the area for the machine where I’m supposed to have rays darted at me. I’m fully plugged in.
She leaves the room for her control room where she monitors through a window, closing a massive foot-thick door on her way out to protect herself from the radiation I was about to receive. It begins. I’m automatically pulled into the MRI. Plugged in, tucked in, the massive plastic donut engulfs me as I stare at the white plastic above my head. The CHK CHK CHK is booming while the classical music plays. I feel like I’m in Clockwork Orange, waiting for my eyes to be spread open with metal forceps. A loud booming automated male voice tells me to inhale, then exhale, then inhale, then exhale, so they can obtain proper images. The nurse announces I would receive contrast fluid soon through my IV. I feel the contrast enter my system automatically, pumping through my veins through my stomach and intestines to show where the inflammation still exists.
Inhale. Exhale. Inhale. Exhale. Inhale. Exhale. Inhale. Inhale. Inhale. Inhale.
I start crying quietly as I stare at the plastic donut MRI 6 inches above my face. It’s scary. It’s all scary. What is this machine and why do I all of a sudden have to do all these tests-why can’t I heal-what the fuck is wrong with me-am I going to die-I thought I was a healthy person-I’m so scared-I’m so scared-I’m so scared.
I’m so alone.
I know the nurse can see me because there’s a tiny camera that can see my face to monitor for consciousness. Tears uncontrollably stream down my face. I was conscious.
It’s over. I’m automatically pulled out of the donut. The cheery nurse comes out, pulls out the IV, I take my headphones off, remove my earplugs, sit up, she tells me I can go change and I’m done. I go to the locker, pull my bag out, disrobe, put my clothes on, go to the bathroom, sob some more.
Truth be told, I’m generally a very positive person who trusts the universe and everything that hits me. But this night I finally wake up to how truly depressed I had been for the past six months, and how truly alone Chron’s Disease can make you feel.
People who have IBS think it’s just like IBS. People who have dietary restrictions like Celiac Disease or Lactose intolerance or other autoimmune disorders think it’s just like theirs and it’s no big deal — it’s just a dietary change. But it’s not. It doesn’t matter what I eat — it all hurts. Every single thing I put in my mouth makes me cringe with pain.
People tell me they have friends who live happy and fulfilling lives now with Crohn’s. People say there have been so many advances in the study of Crohn’s. People say there are medications that help now. People say there’s a light at the end of the tunnel.
What they fail to recognize is that I’m not there yet. Usually with Crohn’s you have a flare up, treat it with meds, it goes into remission, and you’re fine until your next flare up. I’ve been in a flare up for 6 months. 6 months. SIX MONTHS. And I have no idea when it will end. That means my whole body has been inflamed for the past 6 months. My entire GI tract is like a pit of hell waiting for food to enter it and rip my insides apart as some demon within cackles along the way. I have ulcers in my small intestine. I have inflammation in my stomach. Inflammation starts appearing in weird random joints unexpectedly. My whole inflammatory system is attacking my body starting with my GI tract. Every single time I eat, it hurts. I’m terrified of what I’m going to eat. I don’t know what will hurt me because everything seems to throw me in pain no matter what I do.
My life has been flipped upside down. Of course I’ve been moody. Of course I’ve been sad. Of course I’ve snapped at the ones I’ve loved. Of course I’ve been depressed. Of course I haven’t been at my best. I never intend to. It just happens and I always feel horrible for it afterwards. And add to it all, the Uceris, or whatever medications they decide to put me on — they all affect my moods, my anxiety, how my body feels, the full gamut. It takes weeks to adjust to the steroids and it makes me feel weird physically, psychologically, emotionally. I had also been on Cipro and Flagyl countless times before they realized it was Crohn’s, devastating my system even further. I am not myself anymore nor have I been for over half a year. I don’t try to be out of control of my reactions or act from an unconscious place, but after all, I’m human. I am human. I have to keep reminding myself that.
It’s only recently that I realized how truly depressed I’ve been. That there’s this dark hole that has consumed me for several months and I can’t get out of it. That’s something the doctors don’t prepare you for. They don’t tell you that you’ll be completely paralyzed with depression due to this 180 in your life. They don’t tell you how depressed you’ll become because you’re terrified of every single morsel, drop, bit of food or beverage you put into your body. You have no idea what will cause the pain from something you’re required to do to simply survive — eat.
It’s been shocking. All of it. The timing of it. How it happened. But all in all what I’ve learned from this whole situation so far is how incredibly lonely it can be to have Crohn’s Disease. Nobody understands what you’re going through. Nobody can. They do their best and try to cheer you up, but all you need is a listening ear, an attempt to be understanding, patience as you writhe in pain, gentle asks for what you need, and sometimes just sitting in silence with you.
Even for others who have it, it appears differently in everyone, so no one can truly “get” exactly what you’re going through. The best things that my true friends have done is just listen to all of it, tell me it all sucks, and I’m allowed to be sad. Understanding. Empathy. Compassion. Kindness. Setting oneself aside. Attempting to step into the shoes of my pain. At this time of darkness that’s all that helps. I know it will get better, but for now I’m grieving. I mourn the life I used to know before this disease. I weep for the health I used to have. For six months I’ve been saying goodbye to the lifestyle I used to cherish, love, and be grateful for.
I am grateful for the health that I do have. I am grateful for the unconditional love that I do have, that surrounds me every day through my friends, my family, passersby who are kind and good to me, the sun that warms my cheeks and dries the tears steaming down it when I feel at my wits’ end, the wind that breathes fresh beginnings into my lungs, the warm purrs from my cat that rushes to my rescue when I am sad, and the flowers that open their hearts to me when I feel strong enough to walk outside in the morning without my stomach feeling like it’s going to fall out.