I Nuked My Intestines: My Year with Crohn’s

Statistically, at least one poor asshole you know is thinking: “Boy, I hope I don’t shit myself today!”

I’m one of those assholes. Literally.

It used to be that I would start doing medical research for every new or changed symptom to see if it was normal, how common it was, what people were doing to treat it, what to watch for. I looked up the side effects of everything.

I was obsessed with knowing where the bathroom was and hesitant (at best) to stray very far from one.

I used to go to bed with a microwave heating pad every single night, and for awhile it got so bad that I was using it almost all day.

Getting five interrupted and sporadic hours of sleep used to be my normal. Getting up every hour was just something I had to do. I took frequent naps.

I take eight pills a day.

I record everything I eat and every visit to the bathroom.

I have Crohn’s Disease.

Before, I had only the vaguest notion of what IBS and IBD and Celiac and Crohn’s were. They were “middle age diseases.” Things far away that I wouldn’t have to worry about until I was probably forty.

For several years I had a roommate who had IBS and I was frustrated by his frequent bathroom visits and delays which made us an hour late for everything. He couldn’t go to the doctor because he didn’t have insurance. About three months before I kicked him out, in February 2013, I started having symptoms of gastrointestinal distress. But once I had removed that thorn in my side, my symptoms vanished almost overnight.

For six months I ate what I wanted, went out with new friends, enjoyed my new job and my new life. I couldn’t ask for more after the period of hardship I felt I had experienced.

Almost a year after my symptoms had started, February 2014 marked the beginning of my true fight with Crohn’s Disease. My symptoms had returned, and I largely kept it a secret from most people for nearly three more months. I hoped it was just a bad stomach flu or infection or something. I tried probiotics and the BRAT diet among a handful of other over-the-counter solutions before conceding defeat around my birthday in June.

I needed a doctor.

I went to an Urgent Care center (I have no primary care) hoping that they could at least get me pointed in the right direction. I had called a gastrointestinal specialist and been told I needed a referral and I couldn’t find out how to get in touch with any others (I knew nothing about healthcare or insurance or doctors then,) so basically I paid $50 for a book of specialists in the area from the Urgent Care center.

I waited two months for an appointment. August rolled around and my early visits with the GI were unsatisfactory at first. He thought I had Celiac, so we did some blood tests. I was terrified of needles then but with no one to hold my hand, I went to the nearby hospital by myself to have my blood drawn. I was very brave. My Celiac test came back mostly negative but with one antibody slightly elevated. He told me to try the Low FODMAP Diet and we would go from there.

I did notice some improvement almost immediately and overall I was feeling some relief. But after months of the Low FODMAP diet and my lack of improvement, it was time to bring out the proverbial big guns of GI diagnosis.

I needed to be scoped.

Gods, but I was terrified of the whole idea. “Colonoscopies are for people in their forties,” I thought. I asked if there was anything else we could try before doing a scope. It didn’t matter, because a colonoscopy is the best way to diagnose whatever could be wrong with me. So I made my appointment and pretended like it wasn’t the only thing I thought about for over a month. (Prep isn’t as awful as people say it is, although it’s still pretty bad.)

I prayed to every god I didn’t believe in that it wasn’t cancer or something incurable.

It was in turmoil until they finally got my IV in (they had to try three times!) and the drugs hit me and I was rolled away behind doors to listen to hospital employee conversations exchanged over the heads of other drugged up patients as I drifted into the dull, fuzzy sleep of anesthesia.

I don’t remember much about waking up except that I insisted that I needed to go to the bathroom (they apparently insisted that I did not, but no one stopped me from rolling my IV stand into the bathroom three times.) I don’t remember my boyfriend driving me home. I do remember being curled up on my bed crying and falling asleep alternatively because I was too tired to answer his questions about what I wanted to eat.

I vaguely remember eating Skyline chili dogs.

Basically, the results showed normality in my colon, but my small intestine was acting up. The biopsies showed nothing conclusive; consistent with IBD but not specific enough to say what I had. He did, however, diagnose me with Gastroesophageal Reflux Disease (i.e. heartburn) and put me on my very first pills.

I wasn’t good with pills. I’m still not very good, but back then I had to open up my capsule pills and swallow the whole mess with water. I later figured out the peanut butter trick.

By now it’s November 2014. After a couple more weeks of no improvement (and a few more awkward samples,) we had one more test to do. An abdomen MRI. Just like a scope, the prep is worse than the procedure but still not the horrendous gag-inducing chalk liquid people make it sound like, at least not the variety they gave me. I was already lying down prepared to go into the machine when they informed me that I would also have to have a contrast IV which would make me feel like I had wet myself. I thought it felt more like sitting on a very hot bike, but anyway.

The tests come back a few days later and show “flocculated contrast” and a few other things, which my doctor mistakenly tells me indicates Celiac. He corrected his “typo” a few days later, and I was told that my symptoms are consistent with Crohn’s. As you can imagine, I wanted to call him nasty words and insult his intelligence.

So I started treatment.

I got a call a few days later to ask if I wanted a Prednisone taper or Entocort for my steroid treatment. (Obviously I fucking wanted Entocort, as if I didn’t know every horror story associated with Prednisone.) I was mildly upset because I was afraid of gaining a lot of weight on steroids or turning into a total monster. I was afraid of getting moon face, especially. But I was so desperate to feel normal that my fears quickly faded into the kind of anxiety you feel when a line builds behind your slow ass at a cash register.

The best you can hope for with Crohn’s is that it goes into remission and you never hear from it again, so I was hoping.

They also put me on Pentasa (an anti-inflammatory.) Let me just tell you about Pentasa for a second. It seems like almost everyone with a GI disorder has been on this medicine, and everyone will tell you how annoying they are. They’re huge capsule pills and you have to take four of them twice a day, at least. They’re also an obnoxious blue color. They’re expensive, and you’ll probably be on them forever.

Finally, after nearly 9 months, I was graced by the miracle of modern medicine.

My new medicine worked so well, I felt like a new person. Everything went very well for four lovely months. It sounds uninteresting to write about it, but good times are often uninteresting.

At the beginning of April 2015 I didn’t feel that bad, but I had noticed some of my symptoms were coming back if I wasn’t very careful about what I ate. My energy level still wasn’t what it should be. Then my stomach pain returned. I hadn’t achieved remission. I talked to my doctor and he said that most people don’t stay on steroids for longer than four months anyway (at risk of developing steroid-dependency) and that it was time to move up to biologics.

I was terrified. Biologics represented the big bad boogeyman of Crohn’s treatment to me. I had read countless horror stories about side effects and allergic reactions and weight gain and I didn’t want anything to do with it. Again I asked if there was anything else to be done, but my doctor is of the “top down” mentality, meaning that we start with big medicine and try to control it before it gets any worse, vs “bottom up” treatment which consists of progressively more intense drugs. My doctor convinced me to put in the request for insurance coverage for the biologic and in the meantime I was getting a second opinion and doing massive amounts of research. But in the end, I said “fuck it” and scheduled my Remicade appointments for May.

So I nuked my intestines.

Okay, so that’s dramatic and not entirely accurate, but that’s what my brother and I called biologics. Nuking your intestines. Remicade is actually an artificial antibody. You receive Remicade via infusion, meaning you sit in a very boring room for a very long time in a very annoying amount of pain while an IV trolley quietly clicks away next to you and you try to ignore everything about your life. I didn’t know until I had already started the infusions, but you’re on Remicade until it stops working or you develop an allergic reaction. So possibly forever or possibly less than a year. There are no guarantees with this disease or its treatment.

After my first infusion, my energy level shot up. During my first week on Remicade, I made more artwork than I had in the past year (I’m an illustrator, and it feels amazing to make work again.) I was able to eat hot wings again and boy, did I. Remicade is working. I feel like a normal person again. Better than normal.

In the Harry Potter universe, they say that if you drink unicorn blood you will live when you might have died, but you will live a half life, a cursed life.

Remicade feels like magic. Like unicorn blood.

I realized this week that I’ve only looked up symptoms a handful of times in the last month, and that was to make sure it wasn’t Crohn’s or Remicade-related. I wasn’t gripped by anxiety at a recent music festival where bathrooms are scarce. The discoloration on my abdomen from the heat pad is still fading, but it’s fading faster now that I rarely use it. I sleep through the night and I even have dreams again. But I’m still gluten-free as a precaution. And I still take eight pills a day and record every meal and every number two.

Crohn’s was my life for almost a year and that was enough to forget what normal people feel like. I’m still afraid that it will come back, and that my life will be terrorized by a monster again. I still feel the feverish grip of anxiety every time something resembling my old symptoms pops up. But for now, every day and every normal trip to the bathroom is a small party just for me, with confetti and balloons and cheeseburgers and pizza and a big brass band, playing “The Star-Spangled Banner,” bursting out of a giant cake with my name on it.