A Brief History of a Girl Who got Crohn's Part II
Updated: Apr 26, 2019
While I was in undergrad and medical school I struggled with chronic “IBS” and intermittent bouts of severe abdominal pain and constipation. Eczema developed on my hands, elbow creases, and abdomen. It would flare and remit with no rhyme or reason and was desperately and overwhelmingly painful and itchy at times. I developed moderately severe facial acne. I would go months without a period. I struggled with muscle cramps and was frequently ill with respiratory infections and laryngitis. Although I saw 1 or 2 NDs and was tested and treated repeatedly for parasites and given supplements for inflammation I could never seem to make any headway. Through my own research I began to suspect that I had developed allergies or sensitivities to foods from the chronic intestinal infections and inflammation I had suffered. I began removing different foods and through this process discovered that I have a severe gluten intolerance. Celiac antibody testing was negative for me, but removing gluten from my diet changed my life. Finally the severe pain I struggled with daily began to improve. I managed my health for many years through graduation as a Naturopathic physician, moving to a new country, pregnancy and birth of two lovely daughters, and establishing my private medical practice. Interspersed in these many years were two major flares of severe bowel inflammation, both of which resulted in my 2nd and 3rd hospitalizations. Both of these flares were triggered by gluten exposures. I tell you these stories to highlight two things: food triggers can precipitate an acute flare of IBD and misdiagnosis is rampant.
My second major bowel flare came on slowly after deciding to celebrate weaning my daughter by eating a delicious wheat flour cinnamon bun after several years of living mostly gluten free. In hindsight, the consequences were definitely not worth the joy of eating it! Within 7 days I was headed to the hospital with severe, unrelenting right lower quadrant pain. I saw several doctors, had abdominal exams, an ultrasound and was slated for an appendectomy that night, even though I did not present with classic appendicitis. At no point during this experience did anyone consider that I could have an inflammatory bowel disease. Although my ultrasound showed fluid around the lower small intestine and appendix and clear inflammation, the decision was that it was best to just remove the appendix. I was not referred to a gastroenterologist at this time, only a surgeon. There was minimal follow-up.
It is easy to look back on this time and see all the mistakes, all the places I could have advocated for myself. However, I was young. I was a new mother. Stress was high and sleep was poor. I had babies and they came first. I did not want to consider that it could be anything worse than a simple appendicitis so I questioned not. After this procedure things returned to status quo for me. Living with poor digestion, IBS symptoms and multiple food allergies, eczema, acne and chronic intermittent intestinal pain. Fast forward 8 years. At this point I have been a practicing ND for over 10 years. I have learned, studied, and observed myself and my patients dealing with chronic disease. I am beginning to suspect I have some form of Inflammatory Bowel Disease.
My 3rd flare was almost as severe as my 1st, precipitated by stress and passive micro-exposure to gluten in unlabeled nuts and dried fruit. I started noticing some joint pain in my right hip. I would randomly have swelling in my wrists without injury. I noticed a red bump on my knee, then another and another. Here it was, it was back. I had learned about Erythema nodosum and Pyoderma granulosum in medical school and remember sitting in class realizing that this must have been what I experienced while living in Ecuador. However, I was still in denial about what kinds of diseases are associated with these “extra-intestinal manifestations of inflammation” or in other words body-wide inflammation. At that time it was easier to conveniently block this from my mind, than to face the fact that I might have an autoimmune disease. However, it was back with a vengeance and I had come face to face with it again. For context, I also had a 5 year-old daughter home with Influenza virus A. She was sick for 10 days straight with at times a fever of 105 degrees Farenheit, and rapidly dropping weight. Let’s just say that I did not feel that painful bumps on my knees were the priority, so once again I put myself on the back burner and cared for my sick child. By the end of these 10 days I found myself on a slippery slope leading to a very dark place.
I tried acupuncture, cortisol extracts, natural anti-inflammatories, NSAIDS and suffered for about 2 more weeks. Anyone who knows me will tell you I can be stubborn and self-reliant, almost to a fault, but at this point the inflammation was so extreme I couldn’t walk or change positions easily. Anytime I tried to stand up I would be in such extreme pain I would have traitorous tears running down my face. I couldn't control the tears just as I couldn't control what was happening to me. I finally had to admit to myself that I could not manage it on my own.
This time I called in a favor from a Radiologist I knew and got an ultrasound of my abdomen to see if there was marked intestinal inflammation. I took this with me to the ER, told the doctor I had a history of undifferentiated IBD and needed a referral to gastroenterology. The ER doctor was unfamiliar with extra-intestinal manifestations of an acute IBD flare. He wanted to stick a needle in my enlarged knee and pull off fluid to look for infection. I refused. I asked for an abdominal CT or a referral to Gastro. When the CT came back showing acute small intestine inflammation, I got what I asked for. To this day I still wonder how things could have gone differently for me if I did not have a medical background. I knew how to advocate for myself and I was able to get the care and attention I needed. How many patients are misdiagnosed and receive inadequate care every day? That's a scary thought.
The important thing to note is that when the gastroenterology resident came in the room, she took one look at me and probably immediately suspected Crohn's. This was her area of expertise, whereas I was most likely the first person with erythema nodosum the ER doctor had ever seen. This was my first lesson in the truth that not all doctors will know how to help me. I was slated me for a colonoscopy that night. The next morning I was given a diagnosis of Crohn’s disease, and left the hospital with steroids and other pharmaceuticals I was not excited to take.
I would like to say that my story ends here. However, the more truthful statement is that this was actually just the beginning. It was the beginning of a grieving process as I tried to accept a diagnosis that scared and intimidated me. It was the beginning of giving myself permission as an ND to take the epitome of suppressive pharmaceutical drugs: steroids. It was the beginning of realizing that I was very unwell. I had an autoimmune disease and part of the reason that this had happened to me was because I was putting everyone else before myself, I was unable to truly love myself, and I did not know how to say no. This deep psychological realization together with an awareness that there were a lot of things physically wrong with my body, galvanized a journey that took me about 3 years. I would say I am still continuing on that journey, but have reached a beautiful place of balance and understanding that has allowed me to live a full life. A life of optimism, hope for the future and big dreams for myself. This Blog is my attempt to share all the things that I have learned thus far on this journey with the express purpose of helping make your journey shorter, less painful, and more empowered.
Let the Healing begin!