Welcome to “Intestinal Fortitude: A Survivor’s Guide to IBD.” My name is Emmeline Olson, and I was diagnosed with Crohn’s disease almost 13 years ago.
My health journey actually began more than 20 years ago and nearly ended in 2017 when I had a life-saving liver transplant. The transplant wasn’t due to Crohn’s, but rather an autoimmune liver disease called primary sclerosing cholangitis (PSC). This condition seemingly is connected to IBD, though doctors don’t understand why. It’s a chicken-and-egg thing: Most people with PSC also have ulcerative colitis or Crohn’s.
My story started the moment I received my PSC diagnosis. Although details are fuzzy, I remember it was 1996 because I was in graduate school. I don’t recall if I was having gastrointestinal issues or irregular bowel movements. As a 23-year-old grad student, I probably didn’t have the healthiest diet, so I wouldn’t be surprised if I attributed diarrhea to my regular diet of fast food, caffeine, and alcohol. Also, because I pulled all-nighters and had to be at my part-time job at 7 a.m. before heading to class, fatigue was regular, and I blamed any upset or acidic stomach problems on stress.
I sought medical help when I started running high fevers without any other symptoms besides malaise. The fevers would last a few days, but my temperature would normalize after I took Tylenol. I knew something was wrong when my neck’s lymph nodes became swollen and at times painful. After the third or fourth episode, I made an appointment with a general practitioner.
Bloodwork showed I was anemic and had a high white blood cell count. I was referred to a hematologist. With a family history of leukemia, I had a bone marrow biopsy that turned out negative. More tests were ordered, and after spending an entire weekend collecting urine and storing it in my refrigerator, I was referred to a gastroenterologist (GI).
After more inconclusive tests, my GI ordered an endoscopic retrograde cholangiopancreatography and a liver biopsy, which confirmed I had PSC. PSC causes chronic inflammation and scarring of the bile ducts, which constricts them. That eventually led to cirrhosis, the advanced stage of liver scarring. PSC is treatable but not curable, so doctors gave me medications to ease the symptoms, which mainly included fatigue, itching and rashes, bloating, and abdominal pain. Sound familiar?
I saw my GI regularly and lived a fairly uneventful life until 2006. I was experiencing frequent bouts of diarrhea and abdominal bloating from gas, which I thought were caused by a new diet I had started. I worked at a bank and had spent most of the year on two huge projects, so I wasn’t surprised when I began feeling run down and burned out. In early July of that year, I started running high fevers again. My primary care physician prescribed an antibiotic for me on a Wednesday and told me to call him if my fever didn’t go down. If my fever returned or climbed to 103 over the weekend, I was to go to the emergency room.
My temperature was normal on Thursday. As my projects wrapped up, I decided to leave work early on Friday and treat myself to a salt scrub and deep tissue massage. I had never had either but was told they would rid toxins from my body. While I have no medical proof, to this day, I will never get another massage because of what happened next.
When I woke up Saturday with chills, a cold sweat, and a fever over 103, my sister rushed me to the ER. I ended up septic, my hemoglobin was at only 3 (the normal range is 12 to 15.5), and my blood pressure had dropped to 70/30. I was placed in the ICU and monitored by the GI on call because of my PSC. One GI suggested I get on the liver transplant list immediately, which I mentioned to another GI who saw me the next day. He laughed and assured me I was nowhere close to liver failure at the time. Instead, he ordered a magnetic resonance cholangiopancreatography and a colonoscopy, which showed I had Crohn’s. That doctor, Dr. William Stassen, has been my GI ever since.
With Dr. Stassen’s help and the careful monitoring of both my Crohn’s and PSC, I have achieved remission, received a new liver, and am healthier now than I’ve been in more than two decades. I still experience the occasional flares, but I’ve learned my triggers and how to manage them.
I’ll discuss this and other ways Crohn’s has affected my life in future columns. I hope my adventures with IBD will encourage you to keep fighting and to know that you’re not alone.
Read “Intestinal Fortitude” each Thursday at 9 a.m., CDT.
Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.
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