I remember the day I got diagnosed with Crohn’s Disease nearly 23 years ago like it was only 23 minutes ago. It was October 26th, 1998, a Monday, the day after celebrating a friend’s birthday. She was turning 35 and I would shortly be turning 24 that following November. Now that we’ve established that benchmark, let’s start at the beginning.
My troubles began around the beginning of June that year while I was working as a house painter. My furiously fast downward spiral started out as an intermittent crampy stomach ache and a little bit of uhh, diarrhea. Hmm, had I eaten something that didn’t quite agree with me? I wish it had been that simple. As the summer days wore on, that intermittent stomach ache turned into a feeling like my entire insides were constantly on white hot fire. As the summer days wore on, that little bit of diarrhea turned into more daily trips to the bathroom that any normal person would make in the span of an entire week. Those trips to the bathroom were agonizing at best and the bathroom had become my own personal torture chamber.
From June to October, I had gone from a healthy, vibrant young woman in her prime to a withering shell of a human being wearing a frightening death mask. For over 4 months, I did not eat. I did not drink. I slept 18 hours a day. I lost nearly 75lbs. I was in constant excruciating pain. I was wearing children’s sized clothing. I would like to say that all I did was exist, but that would be a gross exaggeration of the truth. To exist is to live. I was dying. Quickly. At that point, I was in such a state of complete despair both physically and emotionally that I decided it was time to end my suffering. I knew I was dying but I wanted to die on my own terms so I made my suicide plans. I would divvy up my meager possessions amongst my friends. I would write each of them a letter that I would attach to whatever trinket I wanted to bestow upon them. I would tell them how much I loved and cherished them and how very sorry I was to have been leaving them. I hoped against all hope that they would understand. This was a solid plan and it was going to happen soon. I had even bought some nice, pretty stationary. Then October 26th happened.
On the morning of October 26th, I began my usual routine of dragging my sorry self out of bed, throwing on some old painting clothes and making my way to that week’s work site. Each step, each breath that was taken that morning was taken in excruciating physical and emotional pain. But it was ok, because it would soon be over. I would soon be dead. But there was something different about that particular day. I wasn’t sure what it was. It was just a feeling.
I arrived at the work site expecting to find the usual crew of guys I had been working with all summer. We’d joke a bit, have our coffee and get to work. But on this particular day, the work site was deserted. It was just me. I sat alone on the porch I was supposed to paint that day and I smoked a few cigarettes. And I reflected. How did this happen to me? Why did this happen to me? And more importantly, WHAT happened to me? As if I were in a trance, I just calmly got up, got back in the car and I started driving. I wasn’t sure where I was going, but I was going somewhere where someone would save me. Turns out I wanted to live after all.
I ended up driving about an hour to my grandmother’s house. I rang the doorbell, she opened the door and I collapsed into a heap right there on her doorstep. I crawled over to her couch and just lay there sobbing, sleeping, waking, sobbing. She called my aunt and my dad and off to the hospital we went.
The ER staff took one look at me and rushed me right into a trauma room where they proceeded to hook me up to all kinds of monitors, took xrays and did blood tests. I was a mess. The ER doctor on call came to my bedside and said to me, “Nichole, you are an extremely and dangerously sick young woman right now and you are not leaving this hospital until I figure out why and how to fix you.” After reading the results of my x-rays and blood tests, he came back into my room and said the words to me that would shape the rest of my life up until this very moment. He took my hand in his, looked directly and intensely into my eyes and said, “Nichole, I’m 100% certain that you have Crohn’s Disease.” And I cried. I didn’t cry because I had Crohn’s Disease, hell I had never even heard of it! I cried because I finally had a name for what had been killing me.
I won’t bore you with a play by play of my life after that diagnosis. I will say, though, that my particular brand of Crohn’s Disease was vicious and unrelenting. Over the course of the next 20 years or so, I would spend more time in a hospital than out of one. I’ve taken enough pills to choke a whole herd of horses a million times over. I’ve had such an inordinate amount of surgery that I lost count. But I am guessing it was somewhere in the 20-ish range.
By some miracle, I then had a couple of good years of actual remission until a fresh hell broke loose. Historically, my Crohn’s liked to settle in my small intestine causing me to lose about 20 feet of it through multiple surgeries over the span of a few years. But around 2007, my Crohn’s just got MEAN and left me with infection after infection. In places I won’t mention. But I will say that Crohn’s can affect your entire digestive tract…mouth to butt. So, you draw the conclusion.
Longer story short, I battled and battled with abscesses and subsequent infections in places I won’t mention. Surgery, surgery, surgery!!! Can’t even remember how many times I went to the operating room to be honest but I’d wager to say I was getting sliced and diced in my most sensitive of areas easily every other week. During this horrible period of my life, my amazing surgeon would ever so gently mention the notion that I should really consider having ostomy surgery…getting a colostomy bag. What??!! See, I had always known deep in my being that a bag would be an eventuality for me, but I never imagined that it would happen in my early 30s. So I thought about it. And then I thought about it some more. For a long time. I just couldn’t pull the trigger because the thought of carrying a bag of my own waste in my pants was just too terrifying. Until one day…
I remember it very clearly. The point where this way of life became vehemently unacceptable. I was in JC Penney asking the nice salesperson where the bathroom was and it happened. I finally lost the last ounce of control I had. Without going into too much detail I will just say this. As I was standing there listening to her, things meant to exit through the back, exited the other way as the infections had damaged the barrier between the two and provided clear passage. Think about that for a second. That was it. That was my bottom. I found that bathroom, I cleaned myself up as best I could, pulled out my phone and I called my surgeon to schedule the ostomy surgery right there in that bathroom stall. Turns out that the infections down there had destroyed the membrane between the front and back. Ew, I know!
What? No, really…WHAT??? Ok then. Here we go!! Let the games begin!! About a week later, I was admitted and prepped for the surgery. That surgery altered the course of my life forever.
This surgery was intended to be temporary so the damage done could heal and then they’d put old Humpty back together again. They would detach my intestines from the back door plumbing and put a little stoma outside my body with a colostomy bag attached to it.
However, after two excruciating years and countless barbaric (my surgeon’s word) procedures, the damage from the infections was rendered permanent and unfixable. I was faced with the decision of giving up the hope of being reattached.
But hope is a funny thing in cases like this. Though it was physically possible to be put back together again, the reality of it all was that it just wasn’t going to work. So after lots and lots of soul searching and putting every bit of trust I had in my surgeon, I realized there was only ONE viable option. Only one decision to be made. That decision was to have backdoor parts removed thus rendering my colostomy permanent. Forever. And ever.
It really wasn’t that difficult of a decision to make actually. See, after the initial shock and awe of the temporary ostomy had waned a bit and after I had learned how to care for it, I slowly started to realize a quality of life that I thought had been lost forever. When I was battling the infections and subsequent failures at repair, I couldn’t and didn’t leave the house. I lived in tremendous pain. I got addicted to pain medication. I fell into a deep and dark depression from which I didn’t think I would ever return. And for the second time in my life, I had made serious plans to end it all.
But with the compassion and intuition of my very gifted therapist, she coaxed me into fessing up to my suicidal plans. But instead, I got to spend some time in a psych unit.
In the years following this particular point in my life, I have battled medical, physical and emotional trauma. I battled a raging opioid addiction. I battled all the demons. A million times over. Every day I am reminded of how much this disease has taken from me. Physically. Emotionally. Every day.
I have no idea how the hell I made it through.
Turns out I have a resiliency in me that has carried me through all these years with a silent and vicious chronic illness. But I am also exhausted. The amount of fortitude it took to get through the last 23 years has taken so much out of me. I have no idea how I will find enough strength in me to survive the next 23 years. But somehow I will. I always do.
I have two options. Not choices. The luxury of choice was taken from me piece by piece, year after year, surgery after surgery. Options. Live with it or don’t live with it.
I admit there are sad, desperate days where the dark thoughts of being free from this incurable illness whisper to me. But then there are the beautiful days where I am proud of how far I have come, how many of these battles I have won. I am strong and I live a full life in spite of all of this nonsense. Those are the days that save me and I pray that they will always outnumber the dark ones.
But on those dark days, I cope, I live, I move on and I move through. If you were to ask me how, I’d be at somewhat of a loss to iterate the how into words. I just do.
In the first couple of years into my diagnosis, I sought therapy. I craved a place where I could cry and rage and cry some more. A place to be pissed off. A place where I could ask the age old why me question. Why me? Who the hell knows and who the hell knows if I’ll ever know? I needed a place where I could be heard. A place where I didn’t have to put on a brave face and make this horrible disease ok for everyone else. I found that place. I raged. I cried. But after a while I stopped asking why and started figuring out HOW. How do I make this ok for ME?
Over the course of the past 23 years and probably just as many surgeries, I have seen five different therapists. I’d go about 2 or 3 years with a therapist, take some time off because I was ok. And then when I wasn’t ok anymore, I’d go to someone else. Rinse and repeat. I sought out different therapists at different times because I was a different person at different times and I needed a different approach, a different perspective.
Each bout of therapy has strengthened the notion of sharing my story. I had to learn to stop locking this secret, silent disease away so no one would know about it. I think THAT is what has helped the most. Simply talking about it. Not for pity. Never for pity. Ok, maybe sometimes for pity.
Talking about this life with Crohn’s Disease has been my greatest coping skill as it would turn out. It is a story worthy of an audience. And I am a survivor worthy of the opportunity to tell it.
I am a veritable phoenix. I have been reduced to ashes many times, yet I have risen time and again. I will always rise. Because I am amazing.