“Trust Your Gut” & the Irony Behind this Sentiment

I was a normal 23 year old when my life turned upside down. Outside of a very intense figure skating accident and subsequent laparoscopic knee surgery, I only experienced a handful of doctors appointments growing up. I had never stayed overnight in the hospital, and I didn’t have the slightest idea of the way medical specialists worked. About a year after I had graduated from college, this all changed. I began experiencing significant GI symptoms - pain that stopped me in my tracks, frequent and urgent trips to the restroom, nausea and vomiting.

My primary care doctor referred me to a Gastroenterologist (GI) in her practice, and I was able to see him about 4 weeks later. I remember walking out of my appointment feeling so discouraged. He prescribed an antidiarrheal and an antispasmodic and sent me on my way, without ordering any tests. I hoped that the symptoms that started suddenly would stop just as quickly, and I attempted to continue living my life around them. About six months later, I was struggling to eat, to keep food down, to sleep, and was unable to commute to the office, so I scheduled an appointment with another GI recommended by my grandma. This was the first specialist of many I’d end up seeing over the next 5 years.

The source remained unclear

Although I went through several colonoscopies, even more endoscopies, CT scans, and a plethora of other medical tests and procedures, the source of my GI distress remained unclear. Out of desperation to control symptoms, my doctors had me bouncing from medication to medication, even suggesting off label drugs that might provide an ounce of relief. All I wanted to do was return to my life. During this time, there were sporadic weeks or even a month here or there that were manageable (usually when I was on Prednisone), and I charged forward, full speed ahead in those moments, determined to do the things I was otherwise missing out on.

This unclear approach caused me to live in constant fear, unable to commit to plans, often choosing not to leave my house, in and out of doctors offices, and in and out of the hospital. While my gut was in no working shape physically, and I often begged for it to be removed, metaphorically I trusted it. I knew in my heart that something was very wrong in my body, and that if I stopped searching for help, or answers, or treatment, I might lose the option to do so completely.

I finally found a great doctor

In the spring of 2014, I found a great doctor that I trusted, and we quickly grew a strong patient-provider relationship. He promised that he would not give up on me, and that we would work together until we could improve my quality of life. Through a combination of biopsies and labs, I was diagnosed with lymphocytic colitis, although he wasn’t confident that explained the severity of my symptoms. It did encourage us to begin trying several oral medications, including Entocort, Lialda, Asacol, Imuran, and Ciprofloxacin.

During a particularly difficult hospitalization a year later, I was experiencing higher than normal pain, dehydration, electrolyte loss and significant bleeding. My doctor utilized a newer test called the PillCam, also known as a capsule endoscopy, which shows the entirety of the small bowel. Although I had already undergone numerous tests that could’ve identified Inflammatory Bowel Disease, it wasn’t until the results from my PillCam showed abnormalities and disease activity in areas of my small bowel that I was diagnosed with Crohn’s disease.

The diagnosis was a relief but difficult

I was devastated that I would need to manage this disease for the rest of my life, but I also felt an overwhelming sense of relief in the days and weeks following my diagnosis. After years of doctors, therapists, colleagues, and friends and family members suggesting that my physical symptoms were manifesting from anxiety, stress, or a poor diet, I reveled in the realization that my metaphorical gut had been right from the beginning - my literal gut was damaged and inflamed, and I was physically ill.

My husband and I were also literally shocked (and somewhat heartbroken) that had this one test been available to my doctor earlier, or had it been completed by one of the previous physicians I had seen, I would not have endured 6.5 years between symptom onset and starting an appropriate treatment plan. We also reflected on how devastating life would have looked if we had simply accepted at face value doctors who said “there is nothing else we can do for you, it might not get any better.” By relying on my intuition, and continuing to fight for answers, I have found myself living with a much higher quality of life.

I know my body better than anyone else

In the years since then, I have become confident in the fact that I know my body better than anyone else. I went through the trial and error of a few biologic medications before finding the one that works best for my symptoms, but this treatment has changed my life. I’ve now been on Remicade for 16 months, and generally, I feel better than I did during the years prior. There are no words to express my gratitude for this, only the desire to reiterate the most important thing I learned from this process - it’s critical to trust your gut feelings.

I am completely aware of the irony behind an IBD patient stressing the idea of “Trusting Your Gut,” but I guess I mean it in the same way as trusting your intuition. In health care systems today, it is crucial to be able to identify the differences between your everyday symptoms, the beginning of a disease flare, and a potentially urgent problem requiring immediate medical attention. In my experience with IBD, I have often struggled with physicians and other medical professionals validating my concerns in real time; however, I have repeatedly seen that by being honest, as professional as possible, and persistent in asking for help, diagnosis, treatment or symptom management, that my gut instinct has never been wrong about the need for something more.