Understanding the Psychological Impact of Crohn's and Colitis

Living with inflammatory bowel disease comes with such a multifaceted set of challenges. There are obviously physical things we struggle with – from abdominal pain to frequent and urgent bathroom trips, to extra-intestinal manifestations affecting the other systems of our bodies.

But there's one in particular I want to write about today. Mental health.

Crohn's and colitis are more than just physical

The emotional and psychological dimensions of living with IBD come in many colors, shapes, and sizes, and I've experienced them so differently as the years have gone on.

In the beginning, there were emotions like fear, frustration, anger, and sadness that felt ever-present. And sometimes even all-consuming. Personally, I went from being a mostly healthy young adult to a 23-year-old who couldn't leave home and often spent much time in the bathroom and in bed.

It was devastating. I felt betrayed by my body and like I couldn't do anything to gain back control over the situation.

The trauma of misdiagnosis and medical gaslighting

Then, there was the diagnostic journey. I have small bowel Crohn's disease, which took more than 6 years to diagnose due to its location and my symptoms.

During this time, the medical professionals I looked to in a trusting manner let me down over and over again. They dismissed my pain, stating that I must be struggling with a mental health disorder that was manifesting physically (rather than the other way around). Ultimately, they tried to tell me that I shouldn't trust my own body or the signals it was giving me.

The remission paradox and "what-if" game

2016-2018 were pivotal years for me in my IBD journey. I was finally correctly diagnosed, and although it took 3 lines of treatment to find the right one, I reached remission status.

My mental health took one exhale, and then I was met with a new kind of anxiety, playing the deep-seated what-if game. What if remission ends? What if it gets as bad as it once was? What if, what if, what if... I wrote about this a while ago, what it was like to live in the waiting. I was always expecting the other shoe to drop.

Living in constant fear with IBD

For the last few years, the other shoes have been dropping in different ways. While my IBD disease activity has been mostly stable, IBD itself has caused and impacted other health problems I now must contend with more frequently.

I constantly feel like I must remain hypervigilant within myself. I am frequently performing body scans, medication inventory checks, and scheduling routine and emergent doctors' appointments. I am also understanding the fear that living in flux has brought to my life on a daily basis.

Crohn's and colitis are psychologically draining

This season, I've struggled with an issue not directly related to my IBD, but one tangentially connected – a hernia in my esophagus that has relegated me to an all-liquid diet. The pain, physical illness, and weakness I've experienced in the last few months has been all too reminiscent of the years prior to my diagnosis, and it's something I've been speaking openly and candidly about with my therapist. It's greatly affecting how I approach each day.

I'll be honest, the fear doesn't just disappear when you hear the word remission – especially with a disease where remission can end at any time for any reason without any warning. I've tried to get used to the unpredictable, but it's been really hard for me.

How do you manage the daily stress of living in flux? I'd love to hear how you handle the anxiety that comes with the emotional anguish and unpredictability of this disease.