Let's Talk About: Trauma & Gastroparesis
Update 2022: Thanks to Dr. Amy Johnson and her Little School of Big Change, I no longer struggle with the trauma described in this post. I don’t think it’s a coincidence that my gastroparesis symptoms have also improved.
November 6, 2000 was just an ordinary Monday -- until it wasn’t. I was nineteen years old and in my sophomore year at Dartmouth College. I'd been feeling pretty sick for a couple of days, so I went to the College infirmary that morning and was given a prescriptions for penicillin and compazine. By dinnertime, I was in the ICU on a ventilator due to a reaction to one of those medications.
It's been eleven years now, but I still remember much of it like it was yesterday. The odd sensation as my throat started to close. The intense throbbing in my head and pounding in my chest with each shot of epinephrine. Not knowing what to do with my tongue once it was so swollen that it no longer fit in my mouth. The dreadful noise I made each time I tried to take a breath. The shock and pain as a doctor shoved a thick yellow tube up my nose in a panicked attempt to help me breathe. I remember one doctor shouting to another that they'd have to intubate. The other asking if he should page so-and-so. The first responding, "we don't have time for that."
I remember holding on tightly to my best friend's hand as the doctor explained that they'd be putting me to sleep. I asked when I'd wake up, barely able to speak due to the ridiculously swollen tongue. I remember being surprised at the response: "Wednesday. Maybe." Both because Wednesday was two whole days away...and because he said "maybe." Did he mean maybe I'd wake up on Wednesday? or just maybe I'd wake up? I was terrified. And then I was asleep.
Thankfully, I did wake up. On a ventilator in the ICU, my arms strapped to the bed so that I wouldn't try to pull the tube out of my throat as I came off sedation. I was confused and disoriented. I was also terribly frustrated because I could neither speak nor write, but I had so many questions. What day was it? (It was, in fact, Wednesday.) Was I going to be, okay? (Eventually, yes.) Who had won the presidential election? (Still to be determined thanks to the "hanging chads.")
I was eventually taken off of the ventilator and moved to a regular room, where my mom stayed by my side until I was discharged a couple of days later. Though the worst was over, I was still terrified. I cried like a small child every time she went to grab a cup of coffee or make a phone call, scared to be alone for even a second. I'd gone to sleep a Type-A kind of gal, always in control of the situation and I woke up feeling as if I suddenly had no control over anything at all, including my life.
I finished my classes from home that term and returned to Dartmouth after the holidays. I was determined to get back to "normal" life, but I was still riddled with anxiety and the (irrational) fear that my throat could close up again at any time. I was popping Benadryl like candy...just in case. I ended up withdrawing from school that term because I was having what I now realize were panic attacks.
Back at home, I saw a therapist a handful of times but it wasn't a good fit. I did my best to just ignore the anxiety and fear. I tried to convince myself and others that the experience had taught me valuable lessons: not to sweat the small stuff and to live in the moment. But that's not how I internalized it. The message that got lodged in my body and my mind was more along the lines of something life-threatening could happen at any moment and you won't even see it coming...you must always be alert and ready to react before it's too late. That fear has been following me around ever since.
Fortunately, I was able to return to school in the spring of 2001 and I went on to graduate as planned in 2003. The following year I was diagnosed with gastroparesis and dealing with that became my main focus. The effect of the lingering anxiety from the allergic reaction got pushed ever further to the back of my mind. It wasn't until nearly a decade later that I first began to wonder whether the traumatic experience and the stress that followed had played a role in my digestive issues.
I backtracked a bit and the pieces did seem to fit. While my digestion had always been weak -- I'd had a sensitive stomach as a young adult and my gallbladder was removed when I was 17 -- I certainly didn't have gastroparesis prior to the allergic reaction. My first endoscopy was done in August 2001, nine months after the allergic reaction, as the result of several trips to my primary care physician at Dartmouth for recurring stomach aches and nausea, along with occasional vomiting. By my senior year, I was making fairly regular trips to the ER with severe stomach pain. About a year after I'd started dating my now husband in 2002, he began to notice that I'd go from "starving" to "stuffed" after only a few bites of food.
In 2009 I met with a neurologist at the Mayo Clinic and he mentioned that physical or mental trauma could potentially cause the digestive system to shut down. So I started researching trauma (extreme stress) and digestion. I discovered that the "fight or flight response", our bodies natural reaction to both acute and chronic stress, switches on our sympathetic nervous system, which does indeed impair digestion.
A year and a half later the pieces really started to come together when I attended the Digestive Health Alliance Advocacy Day. I was fortunate enough to spend the day with Dr. Brennan Spiegal, an extremely knowledgeable FGIMD specialist. I listened to him speak to the political aides about his work with veterans who have served in Iraq and Afghanistan. These men and women are disproportionately affected by functional GI disorders, likely due to a combination of physical factors and the severe emotional stress of war.
Once I got home, I looked into the existing research. Here's some of what I found:
"Certain stressful life events have been associated with the onset or symptom exacerbation in some of the most common chronic disorders of the digestive system, including functional gastrointestinal disorders (FGD). The association of sustained stressful life events preceding symptom exacerbation is based on several well designed surveys in patients with FGD... In addition, acute life threatening stress episodes in adult life (rape, post-traumatic stress syndrome) are an important risk factor in the development of functional gastrointestinal disorders. Finally, early life stress in the form of abuse plays a major role in the susceptibility of individuals to develop functional [disorders] later in life." - The Neurobiology of Stress and Gastrointestinal Disease, 2000
"There is overwhelming experimental and clinical evidence that stress influences GI motility. The most consistent pattern of GI motor alterations induced by various acute stressors is that of delaying gastric emptying while accelerating large bowel transit." - Stress Related Alterations of Gut Motor Function, 2001
"We can summarize that in experimental animals the most consistent pattern of GI motor alterations induced by various psychological and physical stressors is that of delaying gastric emptying and accelerating colonic transit."- Role of Stress in Functional Gastrointestinal Disorders, 2001
"[There is] considerable evidence supporting the association between psychological distress, childhood trauma and recent environmental stress, and several of the FGIDs... There is also considerable evidence that psychosocial variables are important determinants of the outcomes of global well-being, health-related quality of life, and health care seeking... The FGIDs are a result of complex interactions between biological, psychological, and social factors, and they can only be treated satisfactorily when all these factors are considered and addressed." - Psychosocial Aspects of Functional Gastrointestinal Disorders, 2005
"The role of abuse and trauma history in medical and in particular GI illness and the scientific basis for this association have evolved over the last three decades. Rather than being seen solely within a psychiatric context, we now understand that there are multiple effects on medical symptoms, illness behaviors, and clinical outcomes. The scientific basis for understanding these associations embraces many aspects of the brain-gut axis...There is growing evidence that centrally targeted interventions may have palliative effects on reducing symptoms, altering brain-gut dysregulation and structure, and improving the clinical outcome." - Abuse, Trauma, and GI Illness: Is There a Link?, 2010
And then just this week a brand-new study was published linking trauma and functional gastrointestinal disorders. The findings indicate that "trauma may sensitize the brain and the gut." While the study looked particularly at cases of Irritable Bowel Syndrome, it seems to me that functional gastrointestinal disorders are all related by the dysfunction of the nerves and muscles within the gastrointestinal tract, often for no identifiable reason.
This part of the most recent article resonated with me:
“Patients and their families frequently wonder, ‘why me?’, ‘why did this happen?’” said Dr. Saito Loftus. She said it’s important for patients’ and their healthcare providers to understand the potential link between prior stressful experiences and IBS. “This will help them understand why IBS happened to them, why stress continues to play a role in their IBS symptoms.” She also urged patients and their healthcare providers not to “underplay” the role of stress in their symptoms. “Someone who thinks they have coped with their traumatic experiences adequately on their own and continues to have IBS symptoms should be encouraged to explore professional evaluation and treatment for traumatic life experiences."
It has become apparent to me that I never properly dealt with the traumatic experience I had in 2000 or the lingering anxiety that resulted. This week I started seeing a therapist who specializes in post-traumatic stress. I'm also continuing with weekly craniosacral therapy sessions. In addition to unburdening my mind and body (your body has memories, too), I believe that this will all serve to further improve my gastroparesis management and help me on my journey toward healing.
Am I saying that everyone who has gastroparesis has it because of a trauma or stressful life experiences? Certainly not. I believe that there are many potential causes for gastroparesis and that's in large part what makes it so difficult to understand and treat. I don't believe that it's always caused by damage to the Vagus nerve, for example, as seen in many cases of post-surgical or diabetic gastroparesis. I think that for many of us with idiopathic gastroparesis, it's probably much more complicated. Maybe the result of a perfect storm of factors -- biological, psychological, and social -- that leads to the dysfunction of the enteric nervous and shuts down digestion.
I do think that it's important to acknowledge that trauma or severe stress may very well be one of the factors that can precipitate or exacerbate this condition. In my case, I think it probably went something like this: my digestion was always a bit on the slow side, but nothing that caused any terribly bothersome symptoms. My gallbladder was removed, which may have interrupted digestion in other ways. Then I had the allergic reaction. The physical and emotional trauma caused my body to, for lack of a better term, get stuck in "fight-or-flight" mode, shutting down digestion. The stress of the initial trauma was compounded by the increasingly severe digestive troubles I began experiencing. I was put on increasingly high doses of proton pump inhibitors, which I now believe further impeded proper digestion. When I was finally diagnosed with gastroparesis, after a few years of stressful testing and doctor's appointments, I was confused and frustrated with the lack of information available. More doctor's appointments, more testing, worsening symptoms...more stress. And on and on. Over a decade of health-related stress and anxiety.
Keep in mind that if psychological trauma does contribute to the development of gastroparesis, that in no way means that it's "our own fault" or that it's "all in our head." It also doesn't make the physical symptoms any less legitimate or make us any less deserving of treatment. The connection between the gut and the brain is very real and the messages go both ways.
I'm hoping that by sharing my story and the current research in this area it will open up a discussion about this topic. I have no idea how many of you may share a similar experience, but I do not think I am alone. If you feel comfortable doing so, I invite you to share your own story in the comments below. Personally, I found it surprisingly therapeutic to talk openly about the potential link between the stressful experiences in my past and the subsequent gastroparesis diagnosis. Based on what I've learned, I now firmly believe that addressing past trauma, and the on-going mental and physical stress that may have resulted, is a vital part of a gastroparesis management plan.