Unless you experience Crohn’s disease firsthand, you could never imagine what such a debilitating and painful disease can do to a person’s life – physically and emotionally.
I could describe my journey living with Crohn’s disease many ways – interesting, painful, heartbreaking, frustrating, draining, embarrassing, eye opening, and funny… yes, funny. Mine was an unbelievable and an amazing story. It was a story that I needed to tell to educate the public and inspire others to never give up. And so I wrote my book, Coping With Crohn’s – The Pain & The Laughter.
In fact, when I was diagnosed with Crohn’s at the age of 21, I had just begun my journalism career and writing books was on my ‘to do’ list in life. Little did I know that my first book would be about my life coping with a humiliating bowel disease!
My health issues began when I was about eight or nine years old. I started to experience stomach pain and fatigue, and I was throwing up every meal I ate. Besides my health problems, my parents were getting a divorce. I had lots to deal with at such a tender age – I didn’t need sickness to add to it.
My mother took me to various doctors, but nobody could say for sure what was wrong with me. After my mother’s persistence and many more doctors’ visits, we were told that I had a stomach ulcer. Despite the special diet and medication, my stomach pain did not go away; the vomiting was just unbearable. The only thing that eased my tummy ache was dry crackers and hot peppermint drinks that mom often prepared for me in the middle of the night.
As I got older and moved on to high school, I was still experiencing sporadic pain in my belly and bouts of diarrhea and weakness. I underwent other medical tests like the ‘upper GI series’ and the ‘barium enema’ – nothing definitive showed up. I never complained to my friends. Most of them had no idea that I was having health issues. I put up with the pain and carried on like everyone else in school. Indeed, I became a strong person at a very young age. When you face challenges, you have to act – you have no choice but to grow up fast.
After high school graduation in 1984, I went to college to study journalism. My stomach problems were less frequent at the beginning of college. But the sharp stomach pains and bloating eventually returned with a vengeance. I left classes early because I was weak and needed to rest. Seeking out vacant bathrooms on campus became my daily ritual. I was too embarrassed to use the bathroom in high traffic areas. I always had matches to mask the smell. My college friends had no idea how sick I really was. I was a master at pretending everything was normal for me.
My determination carried me to graduation day. Upon graduation, I got a job right away as a reporter and news anchor for a radio station just outside my hometown. It was another dream coming true. But once again, I experienced sporadic weakness, diarrhea, and unbearable pain in my tummy. I lived with this torment daily, as I dragged myself out of bed at 4 or 5 o’clock every morning. Given that I worked the morning show, beginning at 6 am, I missed days at work. I cried one minute and laughed the next.
One day I was called into the boss’ office. The company suggested another doctor should examine me since my doctor was unable to diagnose my condition. It was one of the darkest moments of my life. I felt guilty for being sick. I became more determined than ever to drag myself into work every morning. I often read the hourly news with my pants undone to ease the pain. The pressure on my tummy was excruciating.
I knew my body could not take much more. All I did was sleep and work. I was always tired. I lost weight. I was a mess on the inside, but I managed to keep up the ‘happy-go-lucky’ appearance. One evening while out with my aunt, I had another attack of vomiting and severe stomach pain. I was rushed to the hospital where I was admitted and, a few days and several tests later, I was diagnosed with Crohn’s disease. It was the fall of 1987 and around the time of my one-year anniversary with the radio station. I had mixed emotions. I should have been celebrating, not in a hospital bed suffering from a serious illness.
Receiving a diagnosis of Crohn’s was a relief because, if nothing else, now they could treat my symptoms. But with my diagnosis came many ups and downs – different medications, new diets, more tests and x-rays, side effects from steroids, time off work, and bowel surgery. My doctor prescribed me prednisone and the side effects made me miserable. Again, I drew from my positive attitude and counted on my sense of humour to keep going. I tried to laugh it off – it was my way of coping.
After a short time taking prednisone, the doctors decided that surgery was required. I didn’t like any of this – especially the impact it was having on my career. I knew, however, that my health had to be priority. If I did not have good health, then I could not work – it was that simple. I also leaned on my family and friends to help keep my strength up. I underwent bowel surgery and had several feet of my small intestine removed. Being off work on extended sick leave was a major emotional struggle for me. Anyone who has IBD will understand how important it is to have a supportive employer. It’s a vital element in the coping process.
It would still be a few more months before I was healthy enough to go back to work. When I did, I saw it as a new beginning; it was a second chance at pursuing my dream career in journalism. I continued to adapt to life with Crohn’s. One day I felt like I could take on the world and then the next day I felt like a truck just ran over me. Through all of this, I was finally getting my life back. I worked hard to build my career in journalism where I stayed for a few years after my diagnosis and eventually moved into the public relations field where I remain today.
I never let Crohn’s hold me back. My positive attitude coupled with my determination and some old fashioned stubbornness pulled me through. Besides all of that, I always reminded myself that things could be a lot worse.
Around the time of my Crohn’s diagnosis, I pondered heavily over all that I had gone through. I quickly realized that I needed to tell my story. I had a desire to do something…to write a book and provide some insight into this disease. I saw my book as a tool to educate people and generate much-needed discussion around IBD. I wanted the silence to end.
I also wrote my book to inspire people. Coping With Crohn’s – The Pain & The Laughter is about putting up a good fight and keeping a positive attitude no matter what challenge you face. Some people often ask how can such a serious illness be funny? Well, while I went through a lot of pain, guilt, anxiety, and all that terrible stuff because of Crohn’s, there were still many, many funny moments. Those funny memories include all the times that I had to wear an ugly blue ‘Johnny’ gown while undergoing medical tests at the hospital… the days I hid in a public washroom lighting matches to mask the smell in case someone came in, while also fearing that the fire alarm might go off… and the times when my radio colleagues sneaked into my hospital room after visiting hours and insisted on telling me jokes that made me laugh so hard I thought my staples were going to pop out! I always found laughter in something. I had a choice – to either laugh or cry. I chose to laugh. Life really is all about making choices.
Indeed, Crohn’s has affected my life in many ways. Besides the obvious physical pain, there was a lot of mental anguish and frustration. I think the biggest impact for me was how it held back my career for a short time. I could deal with the physical pain, but having no control over my career was especially hurtful.
Despite the challenges and painful times, a lot of good also resulted from my experience with Crohn’s. It has made me realize that the most important things in life should not be taken for granted and we must stop sweating the small stuff! My journey with Crohn’s has strengthened my love for life. The most powerful impact that Crohn’s has had on me is that it has instilled in me the importance of remaining positive.
Today, I am doing very well. I take care of myself by eating healthy, exercising, and seeing my doctor regularly. I remain on minor medication, including monthly B12 injections. I also use my own little personal remedies, such as seal oil capsules, which I take every day because this seems to help relieve the really bad joint pain that I occasionally experience. And to help ease my stomach discomfort, I drink peppermint tea. I still undergo regular bowel tests, like the colonoscopy, but it could be worse.
I do not know what the future will bring, and I don’t dwell on the ‘what ifs’. All I know for sure is that I never let Crohn’s disease hold me down in the past… and I certainly won’t let it hold me down in the future. I will continue to take each day as it comes and live my life to the fullest.