My Crohnic Life

– LIFE WITH AN INVISIBLE DISEASE – 

Navigating Alcohol, College & Chronic Illness

THIS IS NOT MEDICAL ADVICE. THIS IS PERSONAL EXPERIENCE. PLEASE DISCUSS ALCOHOL CONSUMPTION WITH YOUR DOCTOR BEFORE DRINKING.

Though I started drinking in high school, the conversation regarding alcohol didn’t come up with my doctors until I was 18 and getting ready to leave for college. Looking back, I so badly wish I had more guidance.

I wish someone had been able to warn me about the consequences of drinking alcohol with chronic illness. I had to learn the hard way. I’m hoping this can be a little guide to make the learning process easier for you.

It’s no secret that you should avoid alcohol when you’re sick. If you’re under the weather with a stomach bug, doctors recommend water & electrolytes, not vodka (I hope).

But things become so much more complex with chronic illness. When you’re sick 24/7 you have to figure out how to have a social life; as you get older, social gatherings often include drinking. So what do you do?

Right before packing up & heading off to school, I saw my rheumatologist for the first time. My Crohn’s seemed under control, but my joints were struggling really badly. My disease was being managed with Humira at the time, and blood work showed I had built up antibodies to the drug. Because of this, and my joint pain, my rheumatologist switched my treatment to Remicade infusions (an immunosuppressant); I would also take a weekly dose of Methotrexate (another immunosuppressant).

At the end off the appointment, he sat me down, looked me in the eyes and said something along the lines of:

I know you’re going to college. I know you’re probably going to drink alcohol. It’s okay to drink in moderation, but you need to be mindful of how tough the medication already is on your liver. Be careful and we will monitor things through blood work.

I heard this and thought, “Let’s get shitty drunk ALL of the time!!!”

He was trying to give me an inch, and I took about 7,000 miles. How I long for that inch now.

I was drinking, at the minimum, 2-3 days a week. I wasn’t sleeping enough. I wasn’t taking my medications diligently. Big red flag.

Many medication labels often read: “Do not drink alcohol with this drug”.

Do you know why?

The human body struggles to metabolize alcohol & medication simultaneously…. it really can’t. It can only choose one at a time.

So, personally, it would take longer for me to feel the effects of the alcohol, which usually led me to over drinking. When the alcohol would hit, it would hit hard.

I would ALWAYS wake up drunk. Sometimes, the effects would last well into the next day. I would do homework drunk. I’d go to class still drunk.

I would vomit every time I drank. I would vomit the next day, sometimes it just happened, and sometimes it was forced.

And then the dreaded hangover would hit. The hangovers were brutal.

When you’re chronically ill, your symptoms can often mimic a hangover. So to add binge drinking to the situation was extremely detrimental to my physical health & quality of life.

I made it through fall semester of my freshman year before having to take medical leave. Was I shocked? No. My naïvety and lack of thoughtfulness had finally caught up to me.

But STILL… this wasn’t enough to get me to stop drinking.

I didn’t stop until last fall, in 2019, when it started really affecting my mental health and those close to me. I would drink, lash out & have horrendous anxiety/panic attacks.

I took a step back and examined my behavior. Lashing out is so NOT ME. I really hated seeing these toxic patterns emerge. I wasn’t fun. I was miserable.

I started leaning more and more into cannabis (both socially and medicinally). Last fall, my physical health was on the quick decline due to mold illness I didn’t know about (I was living in a house with black mold). Weed became my lifeline. In December, I wound up in the ER for an EKG & fluids because I had a single cider with dinner and woke up the next morning with a heart rate of 200 BPM. I felt like I was dying.

I’ve hardly had any alcohol since.

I hope you read this and choose to make different decisions. I hope you realize you can have the college experience without wreaking absolute havoc on your body.

You cannot keep up with your healthy friends. I wish someone had flat out told me this.

Whether you choose to be the party stoner, the designated driver or you simply say NO to partying, please know it’s okay. It’s okay to not get shitty drunk every weekend. It’s okay to protect your health… I HIGHLY ENCOURAGE IT, in fact. But protecting your health can look different for different people. Don’t judge anyone else’s journey.

Listen to your body, and actually honor what it says. Only you know how you feel.

 

Ashley x

Grief & Chronic Illness

First came the cramping, but it was “just” normal uterine pain that came with every little girl’s period. Then came the fatigue, but everyone around me seemed to frequently discuss how exhausted they were, so I was tired too. Then came the bathroom urgency; I had to go, and I had to go NOW, but the thought of sharing this information mortified me into silence.

Then came the red flag, noting I was underweight; in poured the compliments… oh how lucky I was to eat whatever I wanted and still look skeletal in double zero jeans. Then came the stabbing pain; it had to be emotional and stress related though, right? I was a teenage girl who set impossible academic, athletic, social and beauty standards for herself; I traded sleep for straight A’s, stayed late after practices and exhausted myself in trying to be liked by everyone.

Then came the eating disorder pamphlets from my general physician; my sought after physique was finally concerning enough to discuss, but she refused to believe that I ate, no matter the contradicting arguments made by myself and by my mother.

Then, at 15 years old, came the traumatic suffering my brain worked so hard to disassociate from. While the weeks surrounding my Crohn’s diagnosis remain fuzzy, there is one night, quite possibly the worst of my life, I remember too vividly. This was the night I finally realized my doctors had been wrong; I chose to listen to them, instead of my body, like we good little girls were trained to. You know when doctors or nurses ask you to rate your pain on a scale of 1 to 10? This was my 10…11, 12, 13… My family helplessly watched me sob and scream on the bathroom floor. I had knives being plunged into my gut before being viciously twisted around. I was on fire. I could hardly breathe. I crawled. I crumpled. I tried to force myself to vomit. I begged for it to end; I begged to die. How the hell did I end up on death’s doorstep when my biggest concern prior to this event was making my high school’s varsity soccer team?

It took me a long time to process my diagnosis; I had never heard of Crohn’s, or any type of autoimmune disease, until the days leading up to my first colonoscopy, my day of diagnosis (September 13, 2013). My intestines were plagued with hundreds of ulcers and so inflamed that my pediatric Gastroenterologist could barely move the scope throughout. He was stunned; this was the most aggressive case of Crohn’s he had ever seen.

While my insides were waging WWIII, I was playing varsity soccer, taking AP courses, participating in clubsand socializing; he couldn’t fathom the idea that I was even capable of getting out of bed in the morning. Little did I know, I was entering the first stage of grief when it comes to life with chronic illness: denial. A lot has happened in the near 7 years since my Crohn’s diagnosis: two bowel resection surgeries, one gall-bladder removal, new diagnoses, comorbidities, labs, scopes, scans, hospitalizations, dozens of ER visits, specialist appointments, Humira injections, Remicade infusions, Methotrexate (pills then/injections now), Prednisone, countless medications, therapy, 504 plans, class accommodations, and so on. In total, I missed more than half of my school days in high school. On the contrary, in this time, there was also a ton of good and sense of normalcy in my life. I worked summer jobs, traveled within and outside of the country, played three years of varsity soccer; I won a district championship, went to state twice and was named captain my senior year. I graduated high school, spent countless hours with my closest friends, partied, started my first year of college and partied a lot more. I did stupid freshman things, held my friends’ hair back after long nights… the whole “college experience”. As you might imagine, this lifestyle was not sustainable for me; it became a lot harder to stay in denial. To be fully honest with you, it took a night of drinking until I blacked out, followed by one of the worst hangovers of my life to realize it was time to go home; home to my mom, home to myself. One semester away at college, pretending I wasn’t chronically ill, attempting to keep up with my peers brought me out of denial.

It took me to the next phase of my grieving process: bargaining. I spent many years in this phase trying to bargain with a con artist who had no intentions of following through with her side of the deal. My life was consumed by this crook who left me in the dark, in the dust, crippled with anxiety, shaking, afraid and traumatized; however, she taught me one of my most valued life lessons: you can not bargain with chronic illness. Do not try. You will not win.

We have not found a way to outsmart her yet. In the meantime, find ways to cope, to adapt, to nurture; you unfortunately have to meet chronic illness where she stands. So, be brave and show up for yourself; take a seat and compassionately ask her, “What can I do to help you?”. Listen to her needs, and do your best to offer her your support because, honestly, your life depends on it; that’s the brutal, unfiltered truth. We are at the mercy of this selfish bitch right now, but I promise you, we’re working on that; this leads me to the next phase of my grieving process: anger.

First off, I’ll say there is a lot of anger that comes with chronic illness, a lot of it. This is expected, inevitable, common and valid. Be angry. You’ve earned it. However, you have a responsibility to handle and manage this anger in a healthy way; your strategy cannot include bottling it up. I survived an overwhelming number of emotional outbreaks, and so did those around me. I was angry at life, at the universe, at myself, at my body, at my intestines, at my genetics, at my stolen life. I was angry with my doctors for giving me hope and then for later crushing it with their own bare hands. I was angry at the medications that didn’t work. I was angry with my coach for yelling at me for being sick; who called me out for being tired and in pain, for not keeping up, even though we discussed my new medical issues in confidence, where she faked compassion like an Oscar winning actress. I was angry when I needed surgery soon after my diagnosis. I was angrier about my second surgery, during second semester of my senior year, before prom and graduation.

I was angry with my doctors for telling me “we don’t know” and then not providing further resources to help. I was angry I had to hit pause on my education, when my fourth year at Boise State University rolled around. I was angry that my school wasn’t protecting me like they ensured they would with the help of my personalized medical accommodations. I was angry that I felt rushed, misunderstood and unheard as a chronically ill patient in my specialists’ offices; I felt like a nuisance. I was angry that I knew I needed help and no professionals were listening to me. I was angry that I had to pick up the slack left behind by those with the fancy medical degrees, when I had hardly started college myself. I was angry that I was right about several new diagnoses and that my doctors didn’t figure them out first. I was angry that so many doctors put their ego before their patient. I was angrier at the realization that I must not be the only young person dealing with this massive burden.

I was angry. I was angry and frustrated and confused and lonely. I was angry and started demanding more from my healthcare team. As the anger continued to build, I worked with my dad to create a blog; writing was one of my first true loves, and I wanted an outlet for the chaotic mess of emotions that seemed to be controlling every move I made. I had zero expectations for this website, other than a few Facebook shares from supportive family and friends.

A couple of weeks before I launched my blog, I didn’t get angry; I was fucking livid. In November of 2019, I came across an article about a designer’s line at Paris Fashion Week, named Attention Seeker that included IV poles and shirts with SICK typed boldly across. In response to this collection, I posted a picture, on Instagram, of myself at one of my infusions, hooked to an IV pole with a custom made tee, reading: FUCK YOUR FASHION STATEMENT; I was flipping the bird too. I had become so angry, my silence finally broke; this post went viral, and my little personal Instagram account started gaining a lot of attention and followers; I took this opportunity to finally launch my blog.

I started using my website and Instagram page synonymously; I was exhilarated and mortified all at once. I was scared as hell to have my own platform to stand on, with microphones shoved in my face.

But I also felt ready; I was fuming and my anger had all been bottled up like fine wine, aging over the years, in my basement cellar. I realized I couldn’t simply uncork a single bottle of two-buck-chuck, with people looking to me. So, I walked to my basement cellar, bat in hand and bashed every bottle; I screamed and cried and laughed and danced as the glass shattered around me, to the floor.

Welcome to my current phase of the grieving process: acceptance. Acceptance is a never-ending journey; I don’t believe that anyone can accept every single part of chronic illness; how could we when we’re battling our own bodies, our homes? How do you accept an enemy into your home when their goal is to destroy everything in sight, when they promise only pain, suffering and trauma? This intruder has no warrant and there is no caution tape, no wall and no barricade that can keep them out; they will destroy.

As you look at your crumbled home, at what you have lost, you are flooded with emotions. You will begin to grieve. And in this grieving process, you will come to acceptance. You will eventually accept that you can’t change the damage done; you can’t put the ashes back together.

But, regardless, you realize you need a new home. And in building this new home, you need help; you need resources, supplies, a team of trustworthy professionals and a community. This community will be made of similar houses; partially built homes, crumbling on their own foundations, with paint peeling and with fresh embers burning, where a home once stood. Yet these homeowners will lend you their hammers and paintbrushes. They will deliver scraps of wood. They will bring a warm casserole and a hug. They will plant flowers in your new yard. They will hold you while you cry, and they will say, “I know this is hard, but look around you. We understand. You are not alone.” As you look around, through teary eyes, you’ll be introduced to a new member of grief: beauty, and lucky for you, she lives right here, in the heart of this new community. Welcome home.

Waiting

Waiting.

And waiting and waiting and waiting.

This seems to be all I do these days.

I am a full time patient, holding temporary residence in Limbo.

While this is a place I’ve often dwelled, I’ve been lucky to escape. Time and time again.

But, here I am, unpacking my bags and dusting the shelves that hold all of my past pain, sadness, frustration and grief. This home that I’ve grown to know feels so small, cold and lonely.

As I’m rifling through the messy drawers, I find all of my old receipts. I notice one receipt that is worn, withered, torn, fading and crumpled at the bottom; I know before I even grasp the edges that it reads “Crohn’s Disease” on the other side. This little piece of paper was so naïvely placed in here, over seven years ago, as if it’d be the only one.

I start grasping at the receipts like a magician grasps at the endless train of scarves from his sleeve:

Crohns, Humira, Prednisone, Methotrexate, surgery, opioids, infusions, Remicade, Fibromyalgia, Spondylitis, Arthritis, Myofascial Pain, Amplified Musculoskeletal Pain, POTS, Ehlers-Danlos Syndrome, chronic pain…. the receipts are never ending.

And while I’m sitting in the waiting room of the hospital’s imaging center, I can’t stop thinking about that damn drawer. How much more can it take? How long until these small pieces of paper pile so high the drawer won’t shut?

It’s questions like these that continue to flood my head today during my Gastric Emptying Study, waiting to find out if I have Gastroparesis. Waiting to find out if I’m adding to the receipt drawer or if I’m being left at the drawing board with a dulled down piece of chalk and a depleted spirit… again.

I’ve been waiting for this test since September. I’ve been waiting for this test since the first of many ER visits this fall/winter. I’ve been waiting since my two hospital admissions in between. I’ve been waiting since I visited the Mayo Clinic in January. I’ve been waiting for answers for far too long.

Yet, this isn’t surprising. Waiting is not a foreign concept to chronically ill patients.

We are constantly waiting for referrals, prescription refills, insurance’s approval, appointments, scans, blood work, labs, results, answers, plans, hope.

And today, I’m not just waiting for my study’s results. I’m waiting to get my life back. I’m waiting to feel like myself again. I’m waiting for my distended and bloated belly to shrink. I’m waiting to stop feeling nauseous every day. I’m waiting to see if I have Lyme… if I have SIBO… if I have mold illnesses.

This is the state in which I live; this is limbo, my humble abode. Welcome.

While I hate this home, I know this is a temporary stay. I know I will get the answers that I’m so desperately seeking. And to be clear, when I get them, I won’t be cured. I won’t be healthy. But at least I will have a plan moving forward. I will have a diagnosis to identify with. I will feel validated. You see, the ticket out of limbo is a diagnosis. It’s a plan. Otherwise, you’re stuck.

And though I feel stuck now, I know I’m anything but; I am reminding myself that this is temporary.

But for now, I have to wait.

While this reality is mostly frustrating, it’s also incredibly humbling… for my patience has come from being a patient.

All of my love.

Ashley

My Glass House

I live in a body made of glass.

Sturdy, but always at the risk of shattering in one fell swoop.

How do you find strength, when your body, your home, is falling apart? Any movement risks another piece to fall out of place.

I remember what it was like to live without this fear, this pain, this burden.

There were warning signs… but I ignored them.

I, instead, put my body through 15 years of a physically brutal sport for any human: soccer. My passion allowed me to play through the warning signs; the concussions, sprained ankles, broken bones, swollen joints, torn tissues, pulled muscles, ankle surgery, muscle contusions… the list goes on.

I eventually had to cut ties with this love of mine… and I’m still not quite fully healed from that heartbreak; it honestly rivals the painful wounds plaguing my body, which I’m sure owe some part of their existence to the beautiful sport I dedicated my young life to (a story for another day).

As a once dedicated athlete, who pushed her body further than any human should, it’s hard for me to accept that I can hardly type this out from bed, without my fingers and wrists threatening to dislocate.

I once had a six-pack… now replaced with a bloated and lumpy tummy, uneven from surgeries and missing organs. There are scars, emotional and physical, scattered across.

The powerful legs that swiftly carried me are now thin and shaky and often fail me.

I weighed in at 110 lbs. at Mayo… and I know very little of this is muscle. I haven’t weighed this much in longer than I’d like to admit.

Two days ago, I was able to leave the house, drive myself to the grocery store… and this was a celebration.

This celebration quickly turned to worry, as I had to figure out how to carry my two grocery bags across the Trader Joe’s parking lot without dislocating my shoulder… especially because, when I was inside, I had already popped my wrist out of place.

This simple day that signified a leap in progress and strength for me, was called a “lazy day” by my cashier.

He went on about how jealous he was that I wasn’t at work… if only he know that I never get to leave work.

I am constantly working to keep this body together. To keep it functioning. To keep it moving. Breathing. Eating. Resting. Healing. Learning. Advocating.

Lazy? Living in a body made of glass is anything but.

I am trying my best to keep from shattering, but that is a risk I cannot fully control.

The once warm and thriving tissue that made up my being has hardened into brittle glass. This is part of my reality with Hypermobile Ehlers Syndrome (hEDS). It’s a part of my life that I am struggling to find any love for. I have battled to love and advocate for my body as these diseases have taken over it; how do I love the fragility and delicacy that threaten my being every single day.

I don’t feel safe in this body, this home. And you shouldn’t throw stones at a glass house, right? I preach to love your body and own your scars, but I want to throw fucking rocks at this glass house of mine. Like I have for years. It’s high pain days that make me start to shatter.

Last night, I was on the brink.

But today, I vow to myself to instead grab the glue and work to patch these cracks that are so close to crumbing in on me.

I will leave my bed, to move and breathe and eat. I will work today to show my body love, even though I don’t want to. I am still in so much pain, and I’m preparing for another rough night.

I am still working to forgive myself for the lack of care over the years, that has led to such a delicate home.

I live in a body made of glass.

Ashley

 

 

 

A (Flared) Day in the Life [Video]

“What does a typical flare day look like for you?”

This is a common question for me recently; rather than type out a boring summary of my day, I thought I’d show you.

Yesterday, I had no appointments or pharmacy runs, so I took this day as an opportunity to answer this question; I recorded everything I did from morning to bedtime… multiple POTS episodes, my cannabis use, yoga & more.

Merry Christmas and Happy Holidays!

Ashley x