Welcome
So you’ve been diagnosed with ulcerative colitis, or with ME/CFS. Or with Crohn’s disease, proctitis, or some other related condition. Or maybe you have a loved one with a diagnosis, or you’re simply interested because you know there are millions of people living with these life-changing illnesses in the United States alone.
Whatever is the case, my Gut Feelings blog and resource page are for you. They’re for patients, caregivers, and still-healthy people who want to understand these illnesses. Welcome all.
Diagnosis
My diagnosis of ulcerative colitis came at age thirty-five, after a lifetime of excellent health. My symptoms developed out of the blue—within a span of months, I went from being a Healthy Person to a Sick Person. It would be years before I came to peace with this shift in identity.
Ulcerative colitis, or UC, is an autoimmune disease of the gut that’s related to Crohn’s disease. Its cause is unknown, and it’s chronic; I will have it for the rest of my life. The diagnosis was devastating at first. I struggled with grief over the health I had lost and the social isolation created by symptoms like severe diarrhea, pain, and fatigue. My doctors could offer only partial answers. At first, each new med they gave me—Entocort, Rowasa, Canasa, Lialda—failed to help much at all.
It soon became clear that along with conventional “Western” medicine, I would need to explore alternative practices, diet, and lifestyle changes to get my health back. I was determined to do everything I could. I tried various diets, each with pros and cons. To learn details about treatments I tried, check out my UC resources page.
Remission, Then Crisis
My first few years were a path of many ups and downs. That’s typical with UC, because there’s no one-size-fits-all treatment. It takes time to learn what your own body needs. I finally achieved remission after a year of struggle, through a macrobiotic diet and eating probiotic foods.
But later, in the summer of 2016, a severe flare-up and an undiagnosed C. diff infection landed me in the hospital for the first time. My state continued to worsen before it improved. I lost thirty-four pounds, became so weak I could barely walk, and was told that I may not survive surgery if and when I needed it. Only when the C. diff was diagnosed and treated did I begin to improve. I spent a month in the hospital and emerged shaken and weak.
Mindfulness…and Infliximab
As I nursed myself back to health, recovery felt like a second chance at life. It was time to make some deeper-down changes that I still hadn’t tackled despite all my other health efforts. I began seriously exploring mindfulness. That exploration calmed my lifelong anxiety, eased my workaholism, and brought new richness to my life.
As I recovered from my crisis, I felt that I had emerged from a dark tunnel. For the first time since diagnosis two and a half years earlier, I was filled with gratitude: for my life, for what health I still had, and even, to my astonishment, for my colitis. Living with this disease has been humbling and enlightening. I wouldn’t have chosen it for myself, but I am grudgingly grateful for what I have learned from it.
Ever since my crisis, I’ve been on infliximab, an immunosuppressive drug with its own risks. I also follow a careful whole-foods diet and loosely try to live an Ayurvedic lifestyle, both of which have helped keep my health in a delicate balance since 2016.
Chronic Fatigue
In the years after recovery from my crisis, I slowly became aware of a new problem. A crushing fatigue was plaguing me often, sending me to the couch for days or even weeks, often hitting without warning. For several years, I simply called this “my fatigue,” and I vaguely understood that it was somehow related to my hospitalization—I had just never fully recovered my energy.
But in 2022, amidst all the news about long covid, I finally became aware that my fatigue had a name: myalgic encephalomyelitis, better known as chronic fatigue syndrome. Very similar to long covid, it’s often caused by severe infections that result in long-term damage to the body’s systems.
I’ve taken a break from blogging since 2022, so ME/CFS is not yet named in most of my blog, although there are several entries about fatigue. When I eventually return to blogging, I intend to write more about this condition too—and how I’m slowly learning to manage it.
The Road Back to Happiness
I don’t have a magic bullet that will help other patients get better. Healing both of these complex conditions, UC and ME/CFS, is about finding what works best for your specific gut, energy needs, and body as a whole. Nevertheless, with UC, I offer insights into the many diets and techniques I’ve tried.
My Gut Feelings blog is one part ideas and one part healing stories. I aim to bridge the world of the healthy and the world of the sick, illuminating what it’s like to live with illness and helping sick people to feel less alone.
Although I don’t have a magic bullet, I can say that my up-and-down path after UC diagnosis eventually led me back to happiness. I hope this website will help others find health and happiness as well. Thanks for reading!