My Crohn’s Remission Just Ended After 10 Years

It took me by surprise, but it didn’t have to. I’ve learned that my body communicates with me effectively — when I’m listening.

It’s May 2007. I’m 12 years old in my sixth-grade social studies class, presenting a research project with my partner about the Dominican Republic. We start handing out Dominican treats — some sort of coconut cookie and a fruit smoothie concoction made with random recipes we found online — when I suddenly feel lightheaded. I approach my teacher’s desk and ask if I can go to the bathroom. He eyes me warily, seemingly concerned about my state. I start to sweat. He asks if I need someone to walk me there, but I say no.

I wake up on the hallway floor with several people staring down at me. I don’t remember falling or even leaving the classroom. I’m taken to the bathroom where I dry-heave for a bit before going to lie down in the nurse’s office.

After a few minutes, I feel better, but my mom picks me up anyway. I come to school the next day perfectly fine, the episode practically forgotten.

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Early life with Crohn’s

It took months before I had a Crohn’s diagnosis, but that day in May is what my brain has registered as the beginning of a lifelong battle.

The summer of 2007 was a pretty sh*tty time. Literally. Anytime I passed gas, it could clear a room. My brothers and sister made fun of me constantly. I’d laugh at their jokes, but I was mortified and would cry when they weren’t looking. I had constant diarrhea, always with blood. I slowly started losing my appetite and then eventually stopped eating altogether. I rapidly began losing weight. More than one person approached my parents to express their concern that I had an eating disorder.

I developed severe, sharp stomach pains that would have me curling into a ball on the floor, as though that would lessen their intensity. I had a mouthful of canker sores — I distinctly remember counting 24 that I was numbing with some random oral gel concoction. My parents thought that I was experiencing some weird puberty symptoms, but I never got my period amid all this.

It was when I started losing my hair that I went to my mom, crying that I was scared I would end up bald. Sure, I could handle severe, debilitating stomach pains, no problem. Baldness? Absolutely not.

I was diagnosed with Crohn’s disease that October. With the right medication, we saw immediate effects. I gained 20 pounds. I finally remembered what it was like to not feel as though someone was twisting a blade into my gut.

Gaining control

It took a few years — and a few painful flares — before everything was under control. But I was officially declared to be in remission in 2014. Great news, of course, but it felt like just another day. I had been feeling well enough for long enough that it wasn’t a surprise. My body had felt like it was in remission before my bloodwork and colonoscopy confirmed it.

For nearly 10 years, Crohn’s felt insignificant to my daily life. I had normal bowel movements, I barely had stomach aches, and I was able to exercise and socialize. I had evaded surgery, I didn’t have an ostomy bag, and I had a medication that was working for me.

All things considered, it seemed like I had it pretty easy. My days were so unperturbed by symptoms, in fact, that Crohn’s rarely crossed my mind. It was as though I didn’t even have the disease. I was lucky.

A new reality

Now, in 2023, much has changed. I live in a new city, I’ve graduated college, and I’m starting a career. And I’m no longer in remission.

It had been so long since my disease was active that when symptoms started appearing, I didn’t think to connect them to my chronic condition. I chalked up my severe bloating to my diet and my inconsistent bowel movements to dehydration. I must not have been sleeping enough. I had changed my exercise routine and my body was clearly adjusting. Maybe my antidepressants were an issue? I pointed a finger at anything other than Crohn’s.

And then came my dear old friend, Ms. Stomach Pain. Hadn’t seen her in years, and I hadn’t missed her one bit. She wasn’t as bad as when I was undiagnosed — sharp and uncomfortable, yes, but bearable. Though I would sometimes have to stop what I was doing, I was saved from curling up in a ball on the ground this time around.

I tried acupuncture, which I found to be very helpful. However, the relief was not consistent or long-lived. Within 2 days of an appointment, my bloating and discomfort would return.

At the time, I was also deeply unhappy at my job. I had been in an unsupportive position for 5 years and felt disrespected and voiceless daily. I was constantly on edge, constantly stressed, and constantly uneasy.

For years, I had managed it; I had a high tolerance for pain — both mental and physical. But that unhappiness, topped with other general life issues — disagreements with friends, general anxiety about the future, body image issues, insomnia — eventually put me over the edge. My mind was unwell, and my body finally reflected it.

It was March when my symptoms reappeared, and it was May when my colonoscopy confirmed that active disease was present. We did not change my medication dosage; my doctor wanted to try other approaches before adjusting the drugs.

I was advised to better manage my stress, continue with acupuncture, and consider taking certain vitamins and supplements. I nodded my head and tried to take in everything she said. Afterward, I went home and cried.

One natural remedy I decided to take was unemployment. Within a few months, I quit my job. It was not a choice I made lightly, but it was a decision I felt I had to make for both my physical and mental well-being.

Lessons in gratitude

I’m constantly amazed by the human body’s capabilities and resilience: how it can heal itself, how it can warn you of danger, how it can absorb your emotions and reflect them through fatigue, appetite, tears, sweat, etc.

For years, my body had been doing so much for me — agreeing with a medication and managing a disease — and I seemingly took it for granted. And when it tried to tell me that something was off — when it was bloated and not producing consistent bowel movements — I forgot to listen to it.

My body absorbed my stress, my unhappiness, my anxiety, my discomfort, and my frustrations and reflected them through my gut.

They say you never know what you’ve got until it’s gone. I had forgotten what it was like to be thinking about my Crohn’s daily — minding what I eat, keeping an eye out for a bathroom wherever I went, feeling as though none of my clothes properly fit.

I can’t say that I’m happy I’m no longer in remission, but I am a toxically optimistic person, so I will say that I am thankful. For months — years, really — I ignored my misery in a position that made me feel worthless and sacrificed my well-being for a paycheck and health insurance.

My mental health had been tanked by the job — everyone in my life knew this — but once my mental health and my physical health were called into question, my body knew, even before my mind did, that something had to change. It had been calling for my attention for months — twisting a knife in my gut, distending my stomach, screaming at me to do something. It was forcing me to listen.

Since quitting my job last month, I have revised a manuscript that is now out on submission for publication, and I’m working on a second book. I got a low-stress job at a gym, where I’m surrounded by a fun-loving, energetic, and inspiring community. I have a second job (and unlimited access to coffee) as a barista at a café, where I work alongside a friend and interact with lovely customers (and their cute dogs!).

My mind is healing, and my body is, too. My anxiety has substantially decreased, and I’m finally able to sleep through the night. My bowel movements are still somewhat inconsistent, but my bloating has lessened. Ms. Stomach Pain has all but disappeared.

The takeaway

Coming out of remission has humbled me. It has reminded me that my body must be respected and that it must be cared for. For so long, my mind was privileged enough to not think about my Crohn’s while my body was quietly fighting it. But body and mind are not mutually exclusive. They work in tandem, doing their best to take care of me daily. It’s my duty, I now realize, to reciprocate.