In the summer of 2014, I woke up in the middle of the night with the most torturous stomach pain I’d ever felt in my entire life. I couldn’t keep any food or liquids down. It seemed as though nothing was moving through me, so it came up. The extremely painful churning sensation in my stomach lasted many hours. Unfortunately, the ER doctors found no real cause or solution for my symptoms. Morphine only dulled the pain for about 20 minutes and then I was writhing again. Thinking it was a stomach bug that needed to run its course, the ER docs sent me home to “ride it out”.
Almost exactly a year later to the day, I woke up suffering from the same symptoms! This time my state was so severe that I was admitted to the hospital for a grueling 48 hours. After many blood tests, an ultra sound, a CT scan and an MRI they found that I had inflammation in my intestines and a partial bowel obstruction causing my bowel stasis. I was told that I likely had Crohn’s disease, a form of Inflammatory Bowel Disease (IBD). I didn’t know anything about Crohn’s at the time, except that it’s lifelong. After just enduring the severe pain of a bowel stricture… I was terrified. But at the same time–I was glad to put a name to what was going on with me.
Luckily, I was introduced to an amazing GI doctor that day in the ER, whom continues to help me monitor my disease to this day. After some follow up outpatient testing– endoscopy, colonoscopy and further blood work, he confirmed my Crohn’s disease diagnosis and indicated it had likely been active for about 2 or 3 years.
He then classified my disease as moderate to severe and wanted to take a pretty aggressive treatment approach. So we decided to skip over 3 different types of drugs that were more for ulcerative colitis or mild cases of Crohn’s because we knew those just wouldn’t work for me. We had to go straight in with the big guns! He wanted me on 6-MP right away and Remicade.
Since then, it has actually taken a team of medical professionals from various fields to manage all the complications & indirect effects of this disease. So far my journey has involved ongoing testing, insurance battles, trial & error with a number of high risk medications, an onslaught of frustrating side effects, a lifestyle and career change, nutrition counseling, diet restrictions, physical therapy, a LOT of sick days, and one heck of an emotional roller coaster to top it all off.
Knowing how especially hard it was for me to personally cope with this disease and hearing from my doctors that I was actually coping “really well”… I didn’t want to think what coping “badly” would mean. I’d seen how quickly this disease had broken me; generally a very strong, positive & happy-go-lucky woman. So, I knew it was likely doing the same or worse damage to so many others.
When I started seeking support I noticed… no one was really talking about the emotional impact of this disease. It blew my mind that in this social media day and age, no one was talking openly about this seemingly obvious side to a Crohn’s life. Online I would see advice left and right about side effects, treatment and ostomies galore! To me, that is all logistics. Helpful? Yes, but not once did I see someone opening up about mental health effects. The stress of handling all the medical logistics, the anxiety you experience over food, fear of the worst-case-scenario, the frustrating unpredictability of symptoms, the intense guilt you feel when you need to cancel on friends or call in sick, and the depression that tends to come along with a flare. The feelings of being “less-than” because we are always sick. All these things are just as crippling as the physical symptoms of IBD. Add that to the responsibilities of a normal life and you’ve got a balancing act that even the most talented tight-rope walker would find challenging.
So, I set out to share my journey in pursuing my best life with Crohn’s disease, in hopes that it would empower others patients to do the same!
While I do blog about all the facets of living with Crohn’s disease, I’m most passionate about shedding light on emotional impact and quality of life. I feel if we work on improving the actual quality of our lives, which involves emotional health, the logistics of the disease will be so much easier to tackle.