OCD and the Anxiety/Gut Connection

Hello, my name is J.E. I’m almost 50 years old and I have struggled with OCD since around the age of nine, and I have also been diagnosed with C-PTSD.

My first memory of OCD symptoms, at the age of nine, was a painful memory about how we moved into this apartment after losing my mother. I specifically remember not being able to walk barefoot on the carpet in our apartment. Before losing my mother, we had always lived in brand-new, very clean homes, and this apartment had old, stained carpet. It terrified me. I couldn’t stand the way my feet felt “contaminated” from the dirty carpet. The work I would do to avoid it was incredible, and a foreshadowing into how I would react to so many things in life, not just dirty carpet.

Much later, I learned more about OCD themes and how contamination works, etc. It’s interesting because over time, as I would “overcome” one contamination or compulsion, a new one would develop. I learned in an OCD support group that OCD really attacks the things you care deeply about. So as my knowledge changed, or my awareness about how germs worked versus how chemicals were bad and how that worked, there was a shift in my OCD symptoms.

For example, I lived with a boyfriend for seven years, and during that time he would install cable in people’s homes for a living, which involved him crawling around in people’s attics. He didn’t shower when he got home, and I felt itchy after hugging him. And that’s when I developed one of my biggest OCD compulsions. Later, as I look back on the experience, I see how being itchy from exposure to insulation was a very real thing, how my ex was simply an asshole for not showering, and how my brain developed ways to protect me. It went into hyper-overdrive, thinking it would keep me safe. I believe the need for safety was the overall drive that took over when my mom left.

A little over ten years ago, I remember lying in bed paralyzed from pain I was feeling in my abdomen. I looked down and I could see a visible, misshapen bulge; it almost seemed to move, even. I scheduled the necessary medical appointments to get checked out. An ultrasound was performed, and I was diagnosed with a uterine fibroid. Since I had previously had surgery to have my tubes tied (to get off the birth control I had been taking for over five years), I think the decision to remove my uterus and fibroid was simple. Get it out. I was on board entirely, thinking my symptoms of excruciating pain would finally be resolved. I had the surgery. Notice how they call this particular surgical procedure “hysterectomy”? It’s the hysteria part of the word I have a problem with. I always say that I had my uterus removed to avoid using the term altogether.

After surgery, when the doctor came to talk to me, he described what he diagnosed as endometriosis that he scraped out of my abdomen. I had never heard of the condition, but later, when I researched more, came to find out it is one of the most painful conditions a person can have. He also said, “You definitely want to get your colon checked out.” It literally took me about eight years to find out what he really meant by that statement!

People talk about the mind-body connection. People talk about gut healing. So many clues along the way, but until very recently, I never made the direct connection between my gut and how anxiety created physical problems! Why did not one single medical professional tell me this information? Why did it take so many trial and errors, constant medical appointments where everything “checked out fine” but I was struggling so much with my health, and getting zero answers from the medical profession we’ve been so accustomed to trusting? Why did it take a major surgery, taking out an organ unrelated to my gut, and eight years of trial and error to discover this information on my own?

Along my path of stumbling and grasping for answers, I wound up in the emergency room, convinced I was in danger of my appendix rupturing. I could barely walk, I was in so much pain. They took me back to the treatment room, got an IV set up in my arm in case they needed to do emergency surgery, and did a CT scan. Then the results came back. I remember the look on the doctor’s face as they were reading the report. Like they couldn’t believe what they were seeing. Of course they used different language, but basically I was told, “You’re full of shit.” Literally, my body had accumulated so much old waste, old poop that my colon and large intestine were holding, and that’s what was creating the pain. Finally, after eight years, it made sense, the comment the surgeon had made: “You’re gonna want to get your colon checked out.” I mean, he saw it from the inside. Well, at the time, I thought oh, that means go get a colonoscopy; I went through that procedure and still wasn’t told I was full of old poop. How is the medical profession this clueless?

So, many years later, I was referred to a gastroenterologist, thinking finally I would get answers as to how to solve the problem of being full of poop from chronic “holding on.” The holding on came from the chronic anxiety. This is probably the most amusing part of this entire story, making it glaringly obvious how clueless many of these “doctors” are. We go through this entire exam process, and the end result is that he wants to do a very invasive test to see how my sphincter muscles are working to release the stool from my large intestine into my colon. I’m like, “You need an expensive, invasive test to tell you an answer I already know?” I’ve been struggling with severe anxiety for 45+ years, of course my sphincter muscles are overactive and tight — duh! This was my biggest aha moment at the cluelessness of modern medicine.

After so many doctors, so many tests leaving me with no answers, I finally started to see I was looking for help in the wrong places. It’s big business to do surgeries and perform big, invasive tests. It’s the bottom line. To get to the root cause, you really have to do your own research. Not to mention the way your medical file looks to the provider treating you. One look at the label “OCD” written all over your chart for the last 20+ years and they say to themselves: It’s the OCD talking. She’s perfectly healthy.

I’ve been tested for different autoimmune conditions, and while many abnormalities were reported in my bloodwork, they too were dismissed. It wasn’t until I sent a picture of my red chapped cheeks to my sister, who is in nursing school and also suffers from autoimmune illness, that she suggested I could have lupus. I’ve looked into it further, I literally have every symptom. The maddening part is that I carry a label that makes it so doctors won’t take me seriously. I have to find other ways to get tested and see if I have the markers for lupus. The really frustrating part is that most likely it will be out-of-pocket, too. All of the things that have really helped me have been things I have paid for myself.

Many hours of self-research later, just looking things up on google, I finally started understanding how anxiety completely shuts down digestion. In simple terms, when the body goes into fight or flight mode, and back in the day when your system was getting geared up to run from a tiger, it would cut off processes that aren’t immediately useful to survival in that moment. Hence why some people with anxiety issues might have much tighter and less flexible hips, for example — it is the body gearing up to run from the tiger. They also might have a sluggish colon over time; it’s fallen into a pattern which, over time, wreaks havoc overall. My colon became very sick, I became very sick, because of anxiety.

I began to listen to stories from a woman who openly shared about how when she was 19 years old, the doctors told her they’d have to rip out 90% of her colon. She was openly talking about how healing the gut also heals anxiety. She shared about how the colon can hold up to 20 lbs of old waste. I secretly begged to differ, and wonder if it’s actually capable of holding more than that. She tried colonics. Twenty years later, not only does she have her full colon intact, she runs a colonic business and another business selling enema bags. I have so much gratitude for this woman’s willingness to openly share about poop, her own struggles, and the help she found and now offers others. And to really look at how society made it such a taboo subject, no wonder I didn’t know about the connection between anxiety and poop! No one talks about it. I’m grateful for the friends and people I’ve felt I could share this with, because maybe my story will help others heal, just as that woman’s story helped me.

I’ve had a handful of colonics. Probably not nearly as many as I need to really be healed. But I swear it saved my life.

As for OCD, I’ve had every theme under the sun. You name it, I’ve experienced it in one form or another. It’s gotten so severe that it landed me in a homeless shelter, so debilitated, and people can’t see the mental battle that’s going on in your head. It was hard for me to physically use a toilet in my living space due to fear of contamination. I’ve even struggled with the “molester” theme, which it turns out is a common theme for OCD sufferers — genuinely believing that you are secretly a child molester and just don’t know it. The pain from that specific theme I know created a ton of physical illness, because of how much agony I was in. It lasted over a year, and at the time, when I was experiencing it, I had no idea it was connected to OCD. I just thought something was terribly wrong with me, and I could tell very few people about it — you can’t just run around telling people you think you might be a child molester. (To be clear: I am not.) One of the things that finally helped me see that I was not, in fact, a child molester, was the simple fact that most child molesters don’t go around questioning whether they are; they just are.

Has my OCD been cured? No. My current struggle, honestly, is a compulsion to not use my kitchen sink because I am convinced the asbestos underneath will hurt me somehow by using it. It’s excruciatingly painful to walk my dishes up to the kitchen in the community center in the apartment complex where I live to wash my dishes. And I try to give myself grace. For getting through so much pain and trauma, and surviving the best way I know how. I wholeheartedly believe these mental conditions come from trauma, and it’s how your brain finds a way to cope. It just forms these different neural pathways because it’s thinking it’s keeping you safe.

And I really don’t care about these anxiety conditions; by that I mean, I don’t care that I may never resolve them and have a “normally” functioning brain. I care about my gut. I’m determined to heal it. It’s frustrating to be too sick to work, and to have trouble affording the healing modalities that have given me so much relief. But I am the strongest person I know. I overcame homelessness, after all, and that is a whole other story, but let’s just say it’s the hardest thing I’ve done.

Human beings aren’t meant to be islands on their own, self-sufficient, etc. And we exist in this sick society that sells us on the idea that we are, and we have fewer and fewer of the tools to actually survive on our own, ironically. How many people can grow their own food? Build a shelter? I know I don’t have the skills.

I’m sharing my story in hopes it helps others. I’m sharing my story acknowledging the ways so many people have helped me.