“It is just an illusion here on Earth that one moment follows another one, like beads on a string, and that once a moment is gone, it is gone forever.”
- Kurt Vonnegut, Slaughterhouse Five
A few years ago, my gastroenterologist wanted me to have something called an esophageal manometry to better understand how my newly diagnosed eosinophilic esophagitis may have been affecting how the muscles in my esophagus were functioning. I work with the guys who wrote the book on esophageal disease, and these guys do a lot of manometries. I know all about esophageal manometry.
My mind immediately went to images of a small bowel enteroclysis I'd had at least a decade prior. My body grew tense and it was almost as if I was back in that cold room with the cold metal table and the cold radiologist, who just didn't believe me when I told her how bad my gag reflex was before she placed a tube down my throat to inject my small intestines with barium.
It took what seemed like forever to get that tube into place. I can still hear her saying "come on now, swallow...swallow" as I choked and gagged and she had to have a nurse bring me a towel so I didn't throw up on myself. I can feel the tears streaming from my eyes as they had me lay on the table to take the x-rays, telling me to keep my chin down as to not trigger more gagging.
The barium shot through my system faster than it had ever done in the past, so it needed to be collected while they finished their x-rays. So someone placed a bag with a nozzle of some sort in my rectum to collect it. At that point I was laughing almost hysterically in my head and I actually disassociated for a bit, seeing myself lying on the table with a tube down my throat and a bag hanging from my ass.
Absolutely not. No manometry.
I think pretty much anyone in the business knows most patients don't like esophageal manometry because it involves placing a probe that looks like a power cable up your nose and down your throat. Then you swallow water many times while the probe measures your esophagus's ability to move liquids down to the stomach (i.e. peristalsis). But most patients will do it because they want to know what's going on.
I refused to do the manometry for over a year. When the option to have the probe placed while I was sedated for an upper endoscopy became available, I said yes to the procedure. I still dreaded the day but waking up with the tube was better than having it placed awake.
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| Looking good. |
The test showed my esophagus only works properly 20% of the time. It confirmed what I feel when I eat or drink, that my esophagus feels like a clogged drain. Usually it's not painful, and sometimes it's mildly entertaining as liquids bubble down. The manometry didn't diagnose me with cancer, or lead to additional tests, or set me up for surgery. It should have been a simple thing to do.
So why did I flat out refuse for so long?
This month, my collaborators at Northwestern and I published the first study on post traumatic stress (PTS) in inflammatory bowel disease in the united states. Dr. Steve Hanauer approached us to do the study after observing symptoms of PTSD in his IBD patients. I wrongfully assumed PTSD had already been studied in IBD.
The only other study was done in Switzerland and they found that over 80% of patients with IBD had at least some PTSD symptoms, and about 20% met the diagnostic criteria for PTSD. You can read the whole article here: IBD PTS Swiss Study
Post Traumatic Stress is a similar construct to post traumatic stress disorder, or PTSD. Because diagnosing PTSD requires a clinical interview by a trained psychologist, post-traumatic stress is what is most commonly researched in medical populations. PTS is a chronic reaction to a traumatic or life threatening event. Estimated rates of PTSD in the US are around 6 to 8%.
Symptoms include recurrent frightening thoughts, difficulty concentrating, hypervigilance, increased hyperarousal (e.g. tension, feeling jittery or jumpy) in the body, and trouble sleeping.
Illness-related PTS is somewhat different in that the person has a perceived “enduring somatic threat” (the person’s body is the underlying reason for trauma) versus PTSD in which case the “trauma” was related to external sources such as war or natural disaster.I want to share some of the main findings and discussions of the paper with you here. I can't copy and paste the article in my blog due to copyright. Plus, who wants to read the whole thing anyway?
In our study of 131 IBD patients, we found that 32% met the criteria for significant PTS symptoms based on standardized cutoff scores.
To give context, we also included patients with IBS in our study and found slightly fewer, 26%, of IBS patients met the same cutoff for PTS.
To give more context, according to the National Center for PTSD under the Department of Veterans Affairs, approximately 11-20% of veterans who served in Iraq or Afghanistan are diagnosed with PTSD (Source)However, IBD patients were much more likely to attribute having PTS symptoms due to their disease experiences.
Patients with Crohn’s disease appear to be the most likely to experience PTS.
Crohn’s patients are twice as likely to report PTS symptoms of hypervigilance, nightmares, being easily startled, and having a sense of a foreshortened future than ulcerative colitis.
Women and Hispanics had higher rates of PTS.
People who we recruited online via social media reported higher rates of PTS than those recruited in our GI clinic.
The biggest risk factor was poor experiences during a hospitalization. The next biggest risk factors are having ileostomy or IPAA surgeries.
Approximately three quarters of patients experienced intense fear, anxiety, or risk to their life during their most stressful hospitalization or surgery.
Ratings for hospital experience were low, around 50 out of 100 points. Or in report card lingo, an F.
While many IBD patients meet the diagnostic cutoff for PTS few have been diagnosed with PTSD or are receiving treatment.
To watch my co-author and I talk about the study, you can go here for our video abstract: IBD PTS Abstract
Signs you may have PTS from your IBD experiences (or any other disease experiences) include avoiding appointments, necessary medical tests (hello, my story above), or not following your treatment plan. You might be afraid to tell your doctor about the severity of your symptoms because you want to avoid events that may trigger flashbacks or intense feelings of anxiety. You may become preoccupied with sensations in your body, withdraw socially, or have intense worries about your future and disease flares.
If you are struggling with what you think are symptoms of PTS, I encourage you to seek help from a professional. Here are some additional resources:
https://www.ptsd.va.gov/gethelp/index.asp
https://www.nami.org/Learn-More/Mental-Health-Conditions/Posttraumatic-Stress-Disorder/Support
http://www.ptsdalliance.org/resources/
I have to say this study is one of my proudest to date in that we were able to shed some light on the experiences of medical PTSD in IBD. Please know we are not done studying this topic. We have more studies planned, hopefully starting this summer. We simply cannot say "hey, this is a thing" then walk away. So stay tuned.
--T2