Post-traumatic stress (PTS) is the term we use for medical trauma due to technicalities in the Diagnostic and Statistical Manual for Mental Disorders (DSM-5) for post-traumatic stress disorder (PTSD). PTS can be less severe that full on PTSD, or it can be full on PTSD. Regardless, the symptoms are identical:
- Feeling hypervigilant/on-edge (increased nervous system arousal)
- Negative mood, irritability
- Avoidance of situations that trigger thoughts about the event(s)
- Nightmares, flashbacks, or other re-experiencing of the traumatic event(s)
The PTS talked about here is specific to IBD-related experiences. We excluded people who have PTSD from other sources of trauma, or other illnesses associated with PTS (e.g., cancers, cardiovascular disease).
I should note prior to our first study of a small-ish online sample, only one study existed on medical PTSD in patients with IBD, done in Switzerland. When one of my colleagues approached me about this topic, I assumed it had been looked into thoroughly because it seemed so obvious to me. It was not. There are now 4 studies on medical post-traumatic stress in patients with IBD. The results are, unfortunately, consistent.
Let's start with the numbers:
- 9.8% of the 797 patients met the full diagnostic criteria for PTSD
- 25-30% reported moderate to severe symptoms of PTS
- Re-experiencing was the most commonly endorsed symptom
- Women reported significantly more PTS symptoms than men
- Hispanic patients reported significantly more PTS symptoms than non-Hispanic patients
- Non-white patients reported significantly more PTS symptoms than white patients
- Patients who did not graduate from college reported more PTS symptoms than those who hold a college degree
In this set of graphs, the percentage of each group reporting moderate to severe PTS symptoms are shown:
How does moderate to severe PTS relate to IBD symptoms?
- More fatigue and pain interfering with day-to-day activities
- More depression
- More anxiety* (This may be cross over symptoms from PTS, so interpret with some caution)
In this set of graphs, the average score for anxiety, depression, fatigue, and pain interference is shown stacked in each column. The columns are split into patients with moderate to severe symptoms (Yes) and those without (No):
How does PTS relate to achieving remission, symptom severity, hospitalizations, and surgery?
- Patients with higher symptoms of negative mood and feeling hypervigilant/on edge were less likely to be in remission
- Patients with higher symptoms of feeling hypervigilant/on edge or with full PTSD were 2 times more likely to have been hospitalized
- Patients with higher symptoms of nightmares/flashbacks, avoidance of triggers, and feeling hypervigilant/on edge were 1.5 to 2 times more likely to have had surgery
- Patients with higher PTS symptoms reported more abdominal pain and bowel symptoms in the past week and past 6 months
Moving on from percentages and statistics, these results are from the 16 patient interviews. Roughly half of the patients met the diagnostic criteria for PTSD (via a diagnostic interview by the study psychologist). Some had very little PTS symptoms, so we hope this gives a rounded perspective.
Five major themes emerged from the analysis of the interview text:
- The uncertaintly of IBD
- Information quality and exchange, and the role of Dr. Google
- Nurses and support staff (inpatient)
- IBD procedures, including diagnostic delays
- Surgery
A sixth, minor theme emerged regarding coping strategies, which were both healthy and unhealthy.
Below are direct patient quotes I've selected to bring light to their experiences. Some of these may be triggering if you have IBD, so please proceed with caution.
“… The fact that it just comes out of nowhere, it's uncontrollable. You don't know what is going on. So, it's just like, why is this happening to me? … I could just understand why this gets associated with PTSD.” (White male, 31 y.o., UC)
“You're out of your control of your own body, not out of control of the situation, but out of control of your own body, that's where it gets traumatic in itself.” (White female, 24 y.o., CD)
“The doctor is in and out. It's like they don't really care. It's just they're there to cut and to sew. And to be like, you're great. Take this, this and this. Take some pain meds and you'll be fine." (White female, 24 y.o. CD)
“Yeah, I think the first Gastroenterologist I had was probably just not a good bedside manner. I think. You know, I was new to Crohn's. I think I asked some questions and she said, well, you can look it up.” (White male, 47 y.o., CD)
“OK, I just met with my team, let me go Google. And nobody's in there. The team's gone. They're done with their rounds. And you're just in the room Googling ileostomy pictures or you know. So that could definitely compound any fears that may have come out of the conversation.” (White female, 28 y.o., CD)
“When I had that surgery one of my best memories from that bad hospitalization was kind of got to know some of the nurses over time, and there was one who would drop in in the evenings for half an hour to watch hockey games with me.” (White male, 38 y.o., CD)
“And that was the worst part of the whole thing ... every day was the same. Like, we don't know what's going on, but you can't get released [from the hospital]. We need to do more stuff. You have to stay over again. They want to run more tests. They want to talk to you. They want to know. That was the worst ever. That's when I started feeling I would just break down. I'd start like I was trying not to cry because my wife was in the room, but like, that was really, really the worst part.” (White male, 31 y.o., UC)
“But the NG tube is horrible...and then you can't eat or drink for a week. So, every time you're sitting there in a hospital bed and, you move your head and it hurts, you know, every inch you move. So, it's pretty painful. So, it's you know, it's torture.” (White male, 34 y.o., CD)
“I was wondering where any of the mental health support comes into play or social workers round or check on anybody's mental well-being. So that was a real huge missing piece that was very disappointing to me. When I did get discharged and got home, it was just something that I couldn't stop thinking about because I was very shaken and upset. Like, how come nobody ever asked how I was doing?” (White female, 41 y.o., UC)
“My surgeon told me my intestine dissolved in his fingers and they were "icky". That's a really freaky thing to think about going inside of you. I think about that all the time now that my intestine dissolved in his fingers and that is the intestine that I had been using and still use….You know you want to talk about nightmares, like pulling my intestines out. I get that. I get that nightmare.” (White male, 38 y.o., CD)
“With Crohn's, it's very important to have a great net of support. Because I feel that it goes very overseen because since it's something in your digestive system, people tend to disregard it as, oh, it's just a tummy ache.” (Latina Female, 29 y.o., CD).
“Yeah, "do you think about killing yourself?" When you're in the hospital with an NG-tube for days...You'd be an idiot not to [think about that].” (White Male, 38 y.o., CD)
What can we do about this?
I'm a fan of prevention. I don't want to treat people with IBD-related trauma. I'd rather we all do a better job acknowledging living with IBD, treating IBD can be traumatic. Even in the hands of the best, most kind, gentile, knowledgable doctors. If we ignore the mental effects of all the stuff that goes along with it, we've failed. If I had a magic wand, every hospital in the world would have an inpatient mental health service for IBD patients as well as easy access to outpatient therapy. We are so far from that reality here in the United States, and I'd guess most everywhere else. My hopes are increasing awareness of medical PTS and the sources of medical trauma is a start, and some change will happen from this. I am far from done with my research on this, but research is glacial and this can't wait for funding cycles and 5-year grants to finish. The costs are too great because untreated PTS/PTSD doesn't just go away with time. It entrenches itself into the person's mind for years. Just like veterans who served in the Vietnam war still experience PTSD in 2021. But it's different when the source of the trauma is your own body, or procedures or treatments done to your body. Let's keep the conversation going and turn these statistics and quotes into action.
List of studies on IBD post-traumatic stress:
Swiss Study: https://fg.bmj.com/content/flgastro/2/1/2.full.pdf
First U.S. Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7534390/
IBD Partners Study: https://academic.oup.com/ibdjournal/advance-article/doi/10.1093/ibd/izab152/6301664
The interview study is being processed for publication by the Journal of Clinical Psychology in Medical Settings and should be available soon.
The Department of Veterans Affairs National Center for PTSD has a wonderful website of information and resources on PTSD and its treatments: