Crohn’s Disease and Mental Health: A Personal Reflection

Crohn’s disease might not affect someone only physically—it can have mental health implications, too. Health’s Crohn’s Disease Advocate Gaylyn Henderson, MPH, opens up about how her chronic illness has impacted her mental health.

Within the past year or so, people have reached out to me on several occasions to write about the connection between Crohn’s disease and mental health. I’ve always declined. I just couldn’t get myself to do it. Little did they know, all I could think to myself was, Let me get through my current mental health state. Let me get on the other side of this fight. 

I have had periods of depression and anxiety throughout my disease journey, but nothing, absolutely nothing, compares to what I am currently going through. I am in the middle of struggling immensely with mental health challenges, experiencing anxiety, depression, and complex post-traumatic stress disorder (CPTSD).

The struggle is in large part due to employment discrimination (due to my Crohn’s), job loss, and overwhelming stress and how they’re all impacting my chronic illness economically, physically, mentally, and emotionally. 

I didn’t think I could write about mental health being smack dab in the middle of a mental health crisis.

But here we are.

Except this time, I asked to write about it. I think it’s time. Writing has always been therapeutic for me; it helps me process my emotions and feelings. If I don’t know how to say it, I write it. My hope is that by writing about some of the things I have experienced, it will help someone else. 

When people have asked me to write about mental health in Crohn’s disease, I’ve always side-eyed the request. I felt as though people were reaching out to me about the topic because of their assumptions about Crohn’s disease. 

Crohn’s disease is an inflammatory bowel disease (IBD). The symptoms of Crohn’s, including diarrhea, frequent and urgent trips to the bathroom, bloody stools, and stomach pain, can be embarrassing to talk about. I’ve always thought that people assume because I have these symptoms, I must be embarrassed and depressed about them. 

I also felt as though people assumed I was embarrassed and depressed about the ostomy I have.

Just because I have Crohn’s or an ostomy doesn’t make me depressed. It’s a stigma I have to fight often.

I’ll never forget the first feature article I agreed to be interviewed for. The publication sent a photographer to my home to get some footage of my everyday life. I was so excited, but that excitement quickly faded. The photographer asked me to act sad and depressed, to stop smiling. I was taken aback, but I wasn’t completely shocked. I was used to that behavior or those kinds of assumptions about my life—they wanted me to act in a way they thought someone with Crohn’s acts.

There was another interview a few years ago when someone reached out to write about relationships and IBD. Midway through, I could tell I wasn’t giving them what they wanted. They asked, “So you’ve never had a situation where your date didn’t want to date you because of bloody stools?” and “Did you have to leave the date because you had to go to the bathroom?” I simply said, “No, that’s never happened to me.”

I’ve always felt that the way people and healthcare providers viewed living with Crohn’s disease wasn’t my complete experience. And when speaking to healthcare providers, all they could hear or see was my disease severity and my symptoms. And based on others’ views, I feel I made assumptions about how I must be feeling.

I believe that’s why I—and so many other people living with IBD—advocate. To be heard, to be understood, to be listened to, and to erase the stigmas and bias of living with Crohn’s disease.

For me, the feeling of being entirely misunderstood contributes to mental health and mental health disorders. Feeling misunderstood; constantly fighting for your health; and getting your providers, family, and friends to understand what you are going through creates a deeper feeling of loneliness and isolation than I can possibly articulate.

The symptoms of Crohn’s disease can be debilitating and life-altering and can absolutely cause depression and isolation. But for me, I wouldn’t say my disease and how it makes me feel exclusively compromises my psychological functioning. For me, at times, the mental health toll more so comes from the assumptions placed on me.

People with IBD, which includes Crohn’s disease as well as ulcerative colitis, have higher rates of depression and anxiety. Compared to the general population, people with IBD are 3-5 times more likely to have anxiety and 2-4 times more likely to have depression.

The symptoms of Crohn’s disease, including pain, fatigue, and fear of frequent and urgent bathroom visits, can be embarrassing and socially isolating. Having an emotional response to living with an unpredictable, often invisible disease is completely understandable. 

Some research also suggests that mental health issues in IBD don’t come solely from the impact symptoms have on your daily life or society’s response to your symptoms but that they may stem from disease activity itself.

The brain and gut are linked, referred to as the brain-gut connection. Research suggests that mental health challenges in IBD may have to do with this connection. One theory is that changes in a person’s gut microbiome (a collection of microorganisms that live in the gut) can affect serotonin, dopamine, and other chemical messengers in the brain known as neurotransmitters. This could be why some people with IBD develop anxiety or depression without a clear emotional trigger.

Whether it’s societal factors, my brain-gut connection, or something else, I have been struggling with anxiety and depression. 

I also have CPTSD. You can get PTSD after experiencing or witnessing a traumatic event. I never really thought of what I’ve been through with my Crohn’s as traumatic. I knew I had a horrific recovery from my ostomy surgery and that I wasn’t mentally prepared to endure all that had occurred, but I never thought that living with Crohn’s disease could cause CPTSD.

My gastroenterologist first brought up the possibility of me having PTSD after my ostomy surgery. About a year after the surgery, the doctor asked to check my surgical site, and I had a negative reaction to them asking to examine me. They weren’t even close to me, but I guess the thought of it scared me. Mental health providers later confirmed the diagnosis.

I had a similar incident of intense negative reactions after experiencing phantom rectal pain. I could feel pain in my rectum even though my rectum had been surgically removed. I remember hyperventilating and panicking, lying on my bed in paralyzing fear in reaction to the phantom pain. 

I was experiencing an episode of PTSD because the pain brought back the memory of being in the hospital in excruciating pain. Suddenly, I had memories of going back and forth to the bathroom, seeing blood, and having endless nights of tears. I was reliving the memory of Crohn’s disease complications I’d had in the past, such as the narrowing of my bowels. 

I often struggle with the feeling that I should be strong enough to handle whatever challenge comes my way because of what I’ve already survived. Living with chronic illness for more than half my life, I have been through some pretty horrific and unimaginable pain. While my experience can be difficult, I am learning that what I have been through can help me cope with or better navigate challenges I encounter. 

And so now, through therapy, I am learning that strength looks different in different situations. Maybe this time, strength looks like rest. Maybe strength looks like giving yourself grace. Maybe it looks like remembering all that you have been through and honoring that. Maybe it looks like recognizing that your body has gone through so much. So maybe this time, strength looks like honoring your lifelong, never-ending fight and relinquishing control (that you never had to begin with).

My therapist said to me, “You can’t win every battle. And you don’t have to win every battle to win the war.” So I’m learning through hard-fought, gut-wrenching battles (past and present); through hundreds of physical and mental therapy sessions; through confusion, heartache, endless tears, sleepless nights, and unimaginable pain that strength or the fight can sometimes look like surrendering.