"No Evidence of Crohn's"
My previous entries in the Gut Instinct Blog series have been about my health history and current understanding around why/how I became so sick. I feel that it is important to understand how we got into a mess, before we can find the path leading back out of it.
I was finally diagnosed with Crohn's disease in December 2012 after years of chronic, intermittent illness. I spent most of 2013 extremely unwell and barely managing while taking pharmaceutical drugs to keep things under control. I found my way to some stability with diet and natural products by the end of 2013 and was able to wean myself completely off of any drugs. I spent 2014-2016 in the process of unraveling the deeper, complex physical challenges I needed to rehabilitate, and 2016 to present has been the steady unpacking of the emotional, spiritual and mental elements of the health/disease spectrum. Sometime in 2018, I started to realize that physically I had reached a different level of stability and the deeper sense of my relationship to the diagnosis of Crohn's started to change. By 2019 I knew that I was done having Crohn's Disease. I knew it deep in my heart and deep in my gut. It had taken a lot of convincing in those early days of illness for me to let the reality of having an autoimmune disease in and accept it as the truth of my situation. In 2019 I found myself on the opposite side of that doorway. I was ready to shut that door and move on from that experience a healthier, more balanced, more whole, more authentic version of myself.
I decided that it was time to get evidence from the world of conventional medicine that what I felt inside was truth. This was a two part decision. Firstly, I felt the need to have this in my file so that all the doctors that had seen and worked with me would have evidence that I am healthy. I understand the value of this as a health care practitioner. Having regular baseline assessments of measurable health variables is important for evaluating risk of future health concerns and to help make decisions around follow-up care for patients. Secondly, from a purely personal perspective I wanted to have a confirmation from the physical realm that I really had done it! I can admit that I secretly hoped it would spark conversation and interest from the MDs that had worked with me around what I had done to get myself back to wellness.
I approached my GP, whom I truly can say is a wonderful doctor and has been very respectful of me, my choices, and my preferences for treatment, to request a Gastroenterology referral. I had long since fired the original Gastroenterologist who diagnosed me with Crohn's. I had one follow-up with him after my hospital diagnosis and quickly realized that he was not a good fit. Having a relationship with your physician that is mutually respectful and supportive is a gift. In the realm of Inflammatory Bowel Disease management I have found that there is a strong element of fear and aggressive treatment that tends to be the norm. The unfortunate result of this is that patients become scared and end up feeling like victims of a terrible disease that they are powerless to fight against. If a doctor tells you he expects a specific outcome, it is highly likely that most patients will believe it. I was informed that if I did not do exactly as told, then I would end up on Methotrexate (a powerful immunosuppressant medication which increases cancer risk). For better or for worse, I have been blessed with an extraordinarily stubborn nature. If someone tries to force me to do something, my immediate response is to dig my heels in. For this reason, when I heard the gastro tell me his recommended program must be followed or else bad things would happen to me, my immediate thought was "No it won't." I wonder now if there was a reason that I was paired with that kind of Dr. at that moment of my diagnosis. Perhaps I needed that experience to galvanize my determination to empower myself to take charge of my own healing.
My GP, knowing my history with the previous Gastro, referred me to a new, young doctor to re-establish care. She was lovely and I feel that she did an excellent job in taking my medical history and reviewing my case. I feel it's important to note that despite the fact that I came into the visit telling her that I believed myself in remission and my Crohn's healed, her response at the end of the intake was that I needed to mentally prepare myself for the fact that I most likely needed to go back on medication. Seeing the images of the severity of my disease in 2012 and having the knowledge that I had stopped all pharmaceutical treatment in late 2013, had convinced her that I was high-risk. This was despite me sharing with her that I was an ND and had been actively working on my own healing for the past 6 years. She ordered an extensive work-up including stool testing, colonoscopy, and an abdominal CT scan in August of 2019.
The stool test for fecal calprotectin came back normal. I smiled
The colonoscopy came back showing " No Evidence of Crohn's Disease." I exhaled. I felt grateful.
The abdominal CT was cancelled and I was fully discharged from Gastroenterology care.
I have never seen this lovely, young doctor again.
The beautiful part of this story is that I had the hard, physical evidence to back up what I knew in my heart to be truth. I no longer have Crohn's Disease.
The part that saddens me is that the lovely, young doctor had no interest in asking me "How did you do that?" She moved on to the next patient on the next gurney and never looked back. Perhaps she thought :"It's a fluke. Sometimes people just spontaneously get better and we don't know why."
If that is the case, I feel sad for her patients. I feel sad for all those who believe that a disease is lifelong just because someone told them it is. I feel sad for those that live in fear, believing that if they try something different then terrible things could happen. Of course I believe that it is important to seek good medical advice and have your care managed by someone that you can trust and believe in. What I do not believe is that you should hand over responsibility for your health and healing to someone else. It is your job. If you give that power away you have just lost your greatest medicine.