Having Crohn's Doesn't Mean You're Brave

Ten years ago from this January, I was diagnosed with Crohn's disease. My gastroenterologist caught it in its mild phase — a rare phenomenon. Despite this, I had trouble wrangling my disease. 

I started on large pills taken with each meal. My prescription was for Lialda. They appeared to be working, and my symptoms decreased every day. But that would be too easy.

Two weeks into my new meds, my throat began to tighten. It did this gradually throughout the day. While I called my doctor, I didn't get a response. I opted to not take the pills at my next meal.

When the doctor called me back the following day, they told me I had an allergic reaction. Neither one of us was sure why it happened two weeks after. They figured I, a person who never had an allergy until this point, was allergic to the main ingredient.

That main ingredient was in all of the Crohn's disease pills, all but one.

That med is called Asacol, and the variant Asacol HD. I took Asacol for a few months before being bumped to Asacol HD. It turns out that the main ingredient is vital. For a while, I stayed afloat. I didn't do as well as on the Lialda. I did, however, have some control.

Until I didn't.

Months later, I noticed a slow decline in my health. I began sleeping more often — napping between classes and before dinner became normal. I'd experience sharper abdominal pain more frequently. Blood made its way back into my stools. I drastically lost weight.

I had trouble focusing and remembering simple things. I experienced a bout of depression and heightened anxiety. I had my first panic attack. Because, fun fact, the hormones for regulating your emotions are made in your gut.

And my gut was not well.

Despite all of this, I decided to stay this way. I didn't call my doctor. I didn't tell them the medication wasn't working. This, from an outside perspective, appears stupid. From my hindsight, I can tell you it was stupid.

However, to understand my headspace, you need to understand the medication. The pills I took had almost no severe side effects. Most of the issues were things like diarrhea and vomiting which, ironically, could also be caused by Crohn's. None of these included cancer or other chronic diseases.

The next step for medication is biologics. These are regular (typically 4-8 weeks) injections, ranging from self-injecting pen to infusions to injecting yourself. Besides my fear of needles, the side effects of these are terrible.

Common side effects include vomiting, diarrhea, or an infection at the injection site. They also list pneumonia, tuberculosis, cancer, and posterior reversible encephalopathy syndrome (a brain disease). These do vary per drug but not in severity.

I was terrified of developing yet another chronic disease, especially cancer. So I shut my mouth and let my health continue to decline.

I'm not sure when I finally spoke up. My brain fog covers a good chunk of my college career, being diagnosed by the second semester of my Freshman year. Part of me thinks I said something. The other part of me says my doctor took a look at my sallow, 92 lb., shaking self and knew.

I was clearly suffering.

In a small green room, my doctor sat across from me. A pained look covered his face. He took a moment after looking at me before reaching out his hand. He placed it on my shoulder. Then he looked me in the eyes and said:

"You're so brave to have endured all of that."

I cried. My doctor gave me a prescription for Humira, and I took it. I couldn't stay like this anymore. Afterward, I jumped through all the insurance hoops to get my new medication. A high dose of Prednisone kept my bowels in check until then.

I remember what he told me vividly, even if not accurately. Something about it rubbed me the wrong way. I knew it was his best attempt to console me. The words weren't vicious in nature or intent.

It took ages before I figured it out.

I dealt with my medication giving out around every year and a half. I broke off a four-year, toxic relationship. I went off caffeine, took out all traces of milk (severely lactose intolerant), removed other triggers I found, and finally gained enough weight to be healthy.

That process took a total of seven or more years. And it sucked. 

The seven years took mental, emotional, physical, and spiritual growth. Lots of it! I'd have mountain highs paired with valleys that weren't quite as deep or long. The mountain highs became rolling hills — still pleasurable, but not as momentary.

In short, it took being brave to realize I hadn't been.

Enduring Crohn's or any other illness or disability isn't brave. You don't choose this issue or whether it flares. You do, however, control what you do about your disease. 

I didn't speak up when I was in pain. That was cowardice, not bravery. I actively chose not to do something scary and hard. I avoided it until it had torn crevices in my colon. That's not brave.

Facing your fears is brave. This can include talking to a doctor, seeking a second opinion, calling your pharmacy 500 plus times to ensure you get your meds on time, avoiding foods you like that are a trigger and other difficult things. 

It's choosing to make the most out of your situation, especially when it sucks. 

Because it does suck. It sucks calling the pharmacy every six weeks, but it also ensures you get your meds. It sucks to sit on the couch when every molecule is screaming for you to do everything. But you need rest.

You may want to punch people, pull out your hair, scream into a pillow, or even cry. The process of being brave isn't pretty. But it's necessary.

But each step towards healing — mental, physical, or otherwise — is worth it.

So take that step even though it sucks stupendously.¹ Then scream about how it sucks or whatever you need to get through it.

You'll be happy you did.

P.S. Here’s a KMart parking lot to scream into. It’s basically another dimension. It won’t care.

Here’s the source

1. Being brave sucks. Sarah agrees in her post, here. I highly recommend reading it as it inspired this one.