My story.

My Story

 Unless you experience Crohn’s disease first hand, 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, heart-breaking, frustrating, draining, embarrassing, eye opening, and funny… yes, funny.

In fact, when I was diagnosed with Crohn’s at the age of 31, I had just began a new role as a Managing Director working for my older brother Paul. Little did I know at the time I would soon have to cope with a humiliating bowel disease! Then followed diagnosis of Severe Asthma, diagnosis of Coronary Artery Disease in 2014 and then to top it all Obstructive Sleep Apnoea diagnosed in February 2016 (Yes this month).

My health issues began when I was about sixteen or seventeen years old. I started to experience stomach pain and fatigue, and I sometimes threw up after eating a meal. Besides my health problems, I was also trying to work out my sexuality. I had lots to deal with at such a young 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, I was 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 drinks that I often drank in the middle of the night.

As I got older I was still experiencing sporadic pain in my belly and bouts of diarrhoea 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 work. Indeed, I became a strong person at a young age. When you face challenges, you have to act – you have no choice but to grow up fast.

In my late teens my stomach problems were less frequent. But the sharp stomach pains and bloating eventually returned with a vengeance. I left work early because I was weak and needed to rest. Seeking out vacant bathrooms at work became my daily ritual. I was too embarrassed to use the bathroom in high traffic areas. I always had deodorant to mask the smell. My friends and colleagues had no idea how sick I really was. I was a master at pretending everything was normal for me.

I got a job as a holiday rep for First Choice on the island of Menorca. It was another dream coming true. But once again, I experienced sporadic weakness, diarrhoea, 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 long days, 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 a doctor should examine me since my own 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 Partner, 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 spring of 2011 and around the time of my one-year anniversary with my partner. 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 partner to help keep my strength up. I underwent surgery on several occasions. Being off work on 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.  I was so lucky that I was working for my brother and he is one in a million!

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.

I am always putting up a good fight and keeping a positive attitude no matter what challenge I face. Some people often ask how can such serious illnesses 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 spraying deodorant to mask the smell in case someone came in, and the times when my colleagues sneaked into my hospital after visiting hours and insisted on telling me jokes that made me laugh so hard I nearly fell out the bed! 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.

Despite the challenges and painful times, a lot of good also resulted from my experience with my illnesses, it has made me realise that the most important things in life should not be taken for granted and we must stop sweating the small stuff! My journey has strengthened my love for life. The most powerful impact that my illnesses have had on me is that it has instilled in me the importance of remaining positive.

Today, I am doing well.  I take care of myself by eating healthy, and seeing my consultants regularly. I remain on medication, including monthly B12 injections, 6 weekly Infliximab infusions, constant steroids and antibiotics to fight off chest infections. 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 warm drinks. I still undergo regular bowel tests, like the colonoscopy, and tests for my heart and lungs 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 my illnesses hold me down in the past… and I certainly won’t let them hold me down in the future. I will continue to take each day as it comes and live my life to the fullest. After all I’m only 37...

Keep Smiling!!!!

Crohn’s disease diagnosis – April 2011

Severe Asthma Diagnosed – August 2013

Coronary Artery Disease Diagnosed – October 2014

Obstructive Sleep Apnoea – Diagnosed February 2016

Space for the next one! :-)