My mother jokes that The Statue of Liberty gave me Crohn’s disease. My family went on vacation in New York City the summer I turned 14. Apart from seeing relatives, one of the stops on the tour was the iconic Lady Liberty. When we got there, it was packed with lines snaking along the cavernous concourse. As happens when towing three children, one of us had to use the bathroom, and that someone was me. Out of respect for a beloved (but crowded) national landmark, I’ll leave a description of the facilities to your imagination, but it wasn’t pretty. We never made it past the concourse due to the crowds, and eventually left intensely disappointed. Two days later I came down with the worst flu I had experienced in my short life. I limped around New York City and thankfully made it home. However, I never got better. Long after I should have recovered, my mother was still taking me to the doctor with complaints of excruciating stomach pain, diarrhea and eventually, extreme weight loss. Definitely not normal for an athletic, healthy 14 year old. This was the start of my Crohn’s journey. When I called her last year and told her that I believed my Crohn’s was actually an infection, she matter-of-factly replied, “You probably got it from the Statue of Liberty.”
By the time I was 19, I had endured all of the standard twentieth century Crohn’s diagnostic tests: small bowel imaging with follow through (before pastel flavored barium), so many blood draws I was immune to needles, stool testing, lactose breath testing and the fan favorite, colonoscopies, which were especially horrifying for a teenager. After 5 years, I had a diagnosis: Crohn’s disease. In the pre-Internet days there was no way to research medical conditions, so my parents relied exclusively on the doctors. My drug regime included prednisone, flagyl and Azulfidine. Other than surgery, there weren’t many options. I got better, then worse, then better, then worse for a long time. I subconsciously learned that eating hurt, so I did it as little as possible. My lower-middle class parents bought me anything I could keep down despite a strict budget. I threw up every morning before school and sat in the seat closest to the door in 1st period so that I could make it to the bathroom to throw up some more. I was 5’7″ and at one point, weighed only 92 pounds. The school told my parents that I may be in danger of failing 10th grade, despite being a high honor roll student, because I had missed so many days. The school nurse and I, however, were best friends. I learned the way to the emergency room with my eyes closed, where every doctor would request that my mother leave the room, then very seriously asked me if I was pregnant. As I was curled in a ball of pain. After coming there for a year, they would test me anyway, despite my insistence that I had a legitimate problem.
High school ended, college ended, life settled into the typical 20-something routine. I thought if I ignored the problem it would go away. I cycled through rounds of prednisone, worked, moved, went to graduate school, fell in love, got married and eventually, had a child. All was well for about 10 months. More routine Crohn’s tests were ordered, including a capsule endoscopy. I didn’t feel sick...until the capsule got stuck. That was the first of four surgeries. When the surgeon snagged the capsule laproscopically, he noticed disease. Bad disease. Disease he later told me would have resulted in sepsis or cancer in a year. Afterward, as I floated towards consciousness, I asked if he got the capsule. I can still hear the surgeon say, “The capsule was easy, it was the 18 inches of diseased intestine that gave me problems.”
I was supposed to fly out in two days to attend a huge conference, but instead I ended up with an emergency resection with an ileostomy bypass at age 32. At home, my 10 month old was happy to see me, but sad I couldn’t play. As I slowly recovered, I realized I had lost the luxury of ignoring my Crohn’s disease. Something had to be done. I took a deep breath, and started Humira. Fast forward 7 years: an ileostomy reversal, a small hernia repair, a second child, the failure of Humira, a metastatic skin presentation of Crohn’s disease, the beginning of Remicade, extreme dietary and lifestyle changes, a large hernia repair, the failure of Remicade, the understanding of how people can die from this disease as I got sicker and my symptoms returned in full force.
The problem I faced in the Fall of 2014 was that there weren’t a whole lot of treatment options for me. Nothing had worked to put me into long term remission. Every day was one health problem after another. My husband and kids got used to me being sick, and became little caretakers. I hated putting them in that position. My eldest started crying one day when she realized I would be turning 40 soon. Surprised, I asked her why she was crying, to which she responded, “Because you’re going to die when you turn 40.” And here I had been patting myself on the back, thinking I was hiding how sick I felt, but they had seen through my deception. Something had to be done, but I was too tired to fight. With kids, quitting was not an option, so I pulled up Google and went to work. Each night after the kids went to bed, I spent hours poring over medical research and searching blogs for new treatments that seemed plausible and accessible enough to help me. Helminths…gross. Fecal matter transplant…good data but even grosser…maybe as a last resort. New anti-TNFs…why would this one work when the others didn’t. Dietzia…unavailable. Diet modifications…already tried that with limited success. I was running out of options. One night I stumbled across an article that described how a bacteria called MAP caused a Crohn's-like disease in cattle and may be spread to the human population via milk. I devoured the article and realized it described my disease pattern perfectly. My Crohn’s disease was an infection! The treatment was tuberculosis-type antibiotics, called AMAT. I sent my blood for testing and it was clearly positive for MAP. I began AMAT just before Thanksgiving of 2014. (The above photo is me with my first dose of meds!) I was pretty sick as the MAP died off, but then got better every week. I gained weight. My blood counts returned to normal. Most importantly, by January of 2015, I couldn’t feel any disease left in my body. It all just melted away. It's been three wonderful years of being Crohn's-free.
Along with a group of like minded patients, I started Human Paratuberculosis Foundation in January 2017. I saw the suffering of so many Crohn's patients around me, and felt I owed it to them to provide research and educational resources into this way of treating Crohn's disease which had given me my life back. Because MAP is carried in milk, research into human implications are scarce. However, RedHill Biopharma has just concluded a Stage 3 FDA trial in Crohn's patients using similar antibiotics to those that healed me. I'd encourage everyone to learn about MAP at HumanPara.org, since knowledge is power! To all of the struggling Crohn's patients out there - I hear you. I've been in your shoes, and I know your pain. I firmly believe a cure is possible, and this research is shifting the paradigm of how we battle IBD. While this was difficult to write, I hope that my story will help others on their path to remission and healing. My goal is to share this information with all of my fellow Crohn’s warriors to support further MAP research, and so you can have the resources you need to make the decision that’s best for you. Peace, health and love to you all.