Part V: Crohn’s or No?
About a month ago as I was working on this new “origin” story I did a deep dive on my procedure results. I noticed the phrase “Specific features of Crohn’s Disease are not identified” from my original colonoscopy in October 2016. When told of my diagnosis change to Crohn’s by my GI doctor at the follow-up appointment, he explained it was due to the abscess and also “skip lesions” of ulceration, because I showed inflammation & ulcers near the ileum. However, I found a page on Ulcerative Colitis at the Stanford University Surgical Pathology site that notes while skip lesions are rare in UC, that “The appendix and appendiceal orifice may be involved in the absence of other right side disease and does not constitute grounds for changing the diagnosis.” (I also know the perils of diagnosing myself, and I haven’t yet discussed this with my doctor. However….)
What does that mean? It means I wonder if I actually *do* have Crohn’s after all.
Which I mentioned to my therapist and she reminded me that the name is just a name. Even in the Listen to Your Gut book, in a section titled “How do you see yourself?,” the book asks if accepting a label of “chronically diseased” is mentally helpful, if it encourages healing or does it lead to a mindset of hopelessness. In other words, am I defined by Ulcerative Colitis, or Crohn’s? Or are my health issues merely a subset of me? Am I working *with* my body or against it?
It’s in that spirit that I deleted my “Crohn’s Disease” Google alert that e-mailed me web articles every day that mentioned Crohn’s, because I don’t need to be reminded every day about it. If there’s a major breakthrough for Crohn’s or Colitis, I’ll hear about it. So if I don’t have Ulcerative Colitis or Crohn’s Disease, what’s going on with me?
I’ve taken to calling what I’m dealing with “gut issues.”
I’ve also been reading a couple of books about healing and the body’s response to stress. First is The Healing Power of the Vagus Nerve by Stanley Rosenberg. There are exercises in the book that are based on Steven Porges’ Polyvagal Theory and rooted in other bodywork, such as craniosacral therapy and Rolfing. The reading is a bit dense for someone who’s just learning about the pieces of anatomy, but I’ve noticed a difference after doing the exercises. I learned of the second book, When The Body Says No: Understanding The Stress-Disease Connection, from the Tim Ferriss podcast episode featuring its author, Dr. Gabor Maté. The idea that there could be a trauma/stress connection to what’s happening inside me is not a new one, and many people with IBD experience flares at stressful times.
I’m not trying to say that it’s all in my head (I’ve heard that before), but I was telling my wife how stressed out I was about the bathroom situation at the parks during our recent trip and she told me I “have my head up my ass.” And she’s right. I’ve been constantly terrified of crapping myself in public for over 20 years. Every time I leave the house, my brain goes into high gear, getting me worked up about what might happen, or what to do if I suddenly get the urgent urge. What I didn’t fully realize was how much that cranks up the stress response from my body as well. It’s exhausting. So far, reading the books helps calm me down and gives me insight about my body’s response to my gut issues that I might better deal with it. And anything that helps is good.
Next: What Foods These Morsels Be