Had a Traumatic Medical Experience? Don't Ignore It

Today's co-author is Dr. Tiffany Taft, a clinical psychologist and an associate professor at Northwestern Medicine. Dr. Taft is an expert on the psychological impacts of chronic digestive diseases, including inflammatory bowel disease (IBD).

Instead of attending basketball practice, 15-year-old Sarah Kate DelaCourt was waiting in the pediatric ward of a hospital. She had been experiencing increasingly painful episodes of bloody diarrhea as well as gradual weight and appetite loss. Sarah Kate was quickly admitted without a discharge date in sight, and she would soon receive life-changing news: a diagnosis of severe ulcerative colitis.

This was only the beginning of a difficult journey because treatments for ulcerative colitis are not effective for all patients, and there are no cures. Sarah Kate endured four more weeks in the hospital, and her world abruptly went from Algebra II to learning how to live with a relapsing-remitting chronic illness. After she left the hospital, she continued to suffer through multiple flares and began experiencing increasingly unsettling feelings of stress and uncertainty. It would be years before she realized that her disease had also significantly impacted her mental health, and that what she was feeling had a name—trauma.

There is a growing recognition of how traumatic medical experiences can leave patients vulnerable to post-traumatic stress (PTS). Chronic gastrointestinal diseases such as inflammatory bowel disease (IBD), can be particularly traumatic, as patients can experience the sudden onset of painful symptoms; the agonizing journey to an accurate diagnosis; and multiple hospitalizations or major surgeries. These diseases are also often hard to talk about and can unexpectedly recur in full force. Despite this, IBD-related PTS is often overlooked and untreated, leaving patients to continue to endure a vicious cycle of stress and trauma. Providers and patients alike should strive to anticipate, prevent, and treat post-traumatic stress in IBD. This work will not only broaden our understanding of chronic illness-related PTS but also establish best practices for managing patient care.

Just like post-traumatic stress from combat or a natural disaster, medical PTS can be defined as a chronic psychological response to an event where a person experiences a real or perceived threat to life or bodily harm with corresponding intense anxiety or fear. Symptoms of PTS include nightmares, flashbacks, feeling on edge, thinking and mood changes, and avoiding situations that may trigger thoughts about the traumatic event.

Recent research showed that 25% of IBD patients studied presented significant PTS symptoms as a result of their disease. For comparison, other studies have found about 18% of combat veterans and about 20% of cancer patients are affected by post-traumatic stress from their respective experiences. Like cancer patients, IBD patients can experience trauma in every step of diagnosing and managing their disease. The unpredictable nature of IBD, both in terms of severity and occurrence, leaves patients to constantly worry about when their painful symptoms will return.

Additionally, some studies have shown that high perceived stress can disturb immune response and gut microbiota, increasing the frequency of symptomatic flares. As a disease rooted in the gut, IBD is particularly useful in understanding how stress can influence gut disturbance. This can potentially be extrapolated to better understand the relationship between disease and medical PTS.

But fundamentally, uncertainty leads to stress, which can have an impact on the mind-gut connection. And this is exacerbated when patients already have a diseased gut. For example, it's common in a hospital setting for patients to wait seemingly forever before their pain is checked. Also with IBD, under the pressure of an emergency, surgeons may stop by only to notify patients of a confirmed operation and to get consent forms signed, without adequately communicating the real need for or even the specifics of the procedure. The trauma of many IBD patients can stem from these kinds of experiences and more, leaving many vulnerable to medical PTS.

To properly address chronic illness-related trauma, it's clear that effective patient-doctor communication is necessary at every step of the patient experience. By anticipating that patients will be overwhelmed by major news regarding their health, surgeons and inpatient doctors should expect and invite patients to ask questions. During the visit, all medical professionals should ask their patients how they are feeling both physically and mentally and encourage them to seek information and support only from credible resources and organizations.

Afterwards, if a patient is in postoperative or outpatient care, it is even more important to check in on PTS symptoms, such as the occurrence of intrusive memories, avoidance of necessary medical follow-up, negative changes in thinking and mood, and more. Referring patients with suspected medical PTS to a qualified psychologist or social worker with expertise in treating trauma is a critical step in expanding and reinforcing a patient’s support network. Medications may also be used to treat PTS, so an additional referral to a psychiatrist may also be beneficial. These preemptive efforts not only help patients with IBD-related trauma, but also are useful in supporting patients’ mental health across illnesses.

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Patients who are proactive in addressing IBD-related trauma, like Sarah Kate, show that it’s possible to overcome medical PTS with proper treatment, but it takes deliberate effort from everyone. Now, Sarah Kate is a pediatric gastroenterology nurse on the same hospital floor where she was diagnosed and experienced flares and hopes to help more IBD patients like herself. Without question, addressing illness-related trauma can be life-changing for patients and should be a requirement for any effective care management plan.