Learn More About Nicole & Her Journey With Crohn's Disease
2004 – A Poopy Year
It all started in May of 2004. I was a bridesmaid for a family friend’s wedding. I was 16 years old and already a pretty petite person by nature. I was miserable this day. Tired, cold, nauseas. I had diarrhea, which was a pain in the ass, literally, when wearing a gown. The reception couldn’t come soon enough, as all I wanted to do was sit, with a sweater on and be near a bathroom. I barely ate anything that night and half way through the night I called my boyfriend to come pick me up and take me home. I was miserable. Not feeling well and wanted nothing but my bed.
A few weeks later, on a Friday at school, we had an activity. It was Multicultural Day so classes were cancelled. I managed to sit through the concert for an hour, but couldn’t manage to attend each pavilion. I went to the bathroom in pain and then made my way home. I will never forget the pain I felt in my stomach with each bump the bus took on the ride home. I got home, called my mom at work and told her I wasn’t well. She made an appointment to see my doctor for the upcoming Tuesday. I didn’t make it to that appointment. That night I was in so much pain I cried out to my mom for help. The next morning, she immediately took me to the hospital. That was the first day of 30 days in the hospital.
I was checked in at 92lbs and lost another 2lbs the first week in. I couldn’t keep anything down, or in. Blood work, CT scans, Ultrasounds, Upper bowel exams, Barium exams, MRI’s, urine tests and stool tests. I had it all. It wasn’t until the third week in, after completing a barium exam (which is the worst tasting, most horrible exam ever!) I was diagnosed with Crohn’s Disease.
You. Have. Crohn’s Disease. Words that haunt me. Words I will never forget. My first response was… WHAT? What is that? I was given a new doctor. A GI specialist. He was horrible. And I’m putting this lightly. For a young girl, aged 17, his bed side manners were nowhere to be found.
As I was under the age of 18, I was sent to Sick Kids Hospital in Toronto to complete a colonoscopy and to participate in one of their many studies. They did blood work on me and my parents. Once I turned 18, I was told to go back to the GI who saw me at the originally hospital. Well, that wasn’t going to happen!
I tried to find a new GI. And I did! I got a referral from my family doctor, however, this new GI was booked up. VERY MUCH BOOKED UP. I waited months to see him. He wanted more tests. They never got scheduled, I never got called and I fell through the cracks.
In hindsight, it all started well before May 2004. I spent months and months prior to this being tired, cold, fatigued. I had cramps and stomach pains. My family doctor knocked it up “growing pains”, “becoming a woman”, and after some blood work, I was diagnosed anemic.
But now, in 2005/2006 I was feeling great! I gained weight back. I was eating whatever I wanted without pain. I was working part time again, graduating high school and my medications were complete. I didn’t need to see a doctor again… right?
Fast forward to 2008. I’m 21 years old. I just completed my first vacation outside of Canada, to Las Vegas for my 21st birthday in June. My cousin got married that same month and I was a bridesmaid again. I was feeling great. Other than being tired often. I LOVED my bed. I enjoyed going to bed early any chance I could. August 2008, I started experiencing back pain, which wasn’t the norm for me. I took a road trip up to a family member’s cottage with my, then, boyfriend, my brother and my cousin. We arrived after a long drive and I was in so much pain. I could hardly walk up the stairs. My back was hunched over. I figured it was from driving 2+ hours, which I wasn’t used to doing. I laid flat on the floor and only felt good while swimming at the beach. We spent a few days at the cottage and once I arrived back to the city, I immediately saw my family doctor. He prescribed me some medication to help with the back pain.
Two days into taking these pills, my stomach ballooned to the size of an eight-month pregnant woman. Back to the ER we go! I was in so much pain they couldn’t check my vitals. They got me in right away and gave me morphine. My mom and I kept telling them I have Crohn’s Disease, perhaps this is why my stomach is in so much pain. The doctors said it was a reaction to the pills I took for my back, so they prescribed me pills to coat my stomach first, before taking the pills for my back. I told them no way am I taking anymore medication. I went home that day.
A few days later, I was right back in that emergency room at night, screaming in pain. I was in so much pain I couldn’t sit in the waiting room. Instead, I was laying on the floor of the emergency room, crying in pain.
My mom kept telling them I had Crohn’s Disease and soon after I was seen. I hardly remember the night. I was in so much pain. I was also given another shot of morphine which allowed me to sleep. I remained at that hospital for a total of seven days.
I was given a new doctor, who happened to be on call that day. What a blessing that was! He’s been my doctor ever since. During my week at the hospital, I was quarantined – I had so much diarrhea they had to ensure I was contagious with some other illness. I had my first blood transfusion during this time also. A round of anti-biotic decreased the size of my abscess allowing me to by pass surgery. Imuran was prescribed to me and from here on out I would live a ‘healthy’, ‘normal’ life.
So I thought.
2008- It’s Back!
2011/2012 – It’s a Boy!
In July of 2011 I found out I was expecting my first child. What a surprise this was! Richard and I had only been dating for a few months when we found out. My health was in good standing. My life was going in a direction I was proud of. I was working full time, I had my own apartment and I was happy. So, let’s add a baby to the mix! Richard and I bought a house together in late 2011 and moved in early 2012, just in time for the arrival of Gabriel.
During this time, I was still taking Imuran. My OB was unsure of the ramifications of taking this medication while pregnant, so she consulted with Mother’s Risk at Sick Kids. Studies showed that there was no risk to mother or baby, but that some babies may be smaller in size at the time of delivery or over a longer period of time. I was so nervous about this. I had several more ultrasounds than the average pregnancy needed to ensure baby was doing just fine. And he was! He was a healthy 7lbs 11oz.
I suffered some postpartum depression in the early months. It was rough. I couldn’t handle my emotions, my temper, my attitude. This proved to be a tough time between Richard and I, but like everything in our lives, we got through it.
The next few years were busy ones. How could it not, we had a new born!
2013/2014 – It’s a Girl!
The summer of 2013, Richard and I found out we were expecting another baby! I was in good health still, but my concerns in regards to taking Imuran during my first pregnancy lingered in my mind during the second. Right away I decided to stop taking Imuran for my second pregnancy. I did this without my GI’s consent – worst decision I could have made.
My pregnancy was great, similar to my first. My cravings were different and my appearance changed a bit, but hey, I was a having a girl this time! Emily was born in early March of 2014, at 6lbs 12oz.
The rest of the year proved to be a tough one.
We moved from Toronto, Ontario to Winnipeg, Manitoba in June of 2014. We would live there for two years. We would fly back and forth often during this time. My best friend was getting married in July of 2014 and I was the Maid of Honour – side note, I seem to get extremely ill after being in someone’s wedding! When I realized, I wasn’t too well again, I searched for help from a GI doctor in Winnipeg. I was put on a slue of medications again. Back on Imuran, Prednisone and some anti-biotics. My weight dropped to 92lbs again. I was 27 years old and weighing no more than a tween. It was hard. I had to leave my full-time position and seek a part time role instead. I felt defeated and drained.
2015 - #GymLife
Thankfully the medication I was given helped me over come a major flare up. I decided to start 2015 off right. I began working with a personal trainer at the gym. I was seeing him about three or four days a week. Sometimes, when I really wasn’t feeling well, it would only be twice a week. Working with a trainer helped me immensely. It gave me energy, an appetite and allowed me to gain my self confidence back. Over the course of the year, I went from 92lbs wearing a size double zero pant, to 104lbs wearing a size zero to a size one pant. HUGE improvement. I honestly couldn’t have done it without my personal trainer.
I continued to work part time at a location I absolutely loved. The reduced hours allowed me time to myself, time to take care of myself. The stress was slowly slipping away.
Until the BIG DAY.
October 3, 2015, Richard and I said, “I DO” – the HAPPIEST day of my life. Wedding planning over the past year and half was stressful at times, trying to coordinate everything from Winnipeg, for a wedding happening in Toronto. But when the day finally arrived, it was smooth sailing. I felt GREAT. I looked great and the whole day was amazing. I’d do it ALL over again in a heartbeat!
Overall, 2015 was a great year. Until November, when I started to crash again. Back on the slue of medication I went. Yes, it helped, for the moment, but it didn’t solve any of the problems I was having. Cramping, bloating and gas pains. Not to mention the fatigue that was bouncing out of each and every day. Then my doctor suggested a new medication for me. A Biologic. You choose he said. Remicade or Humira. I chose Remicade. I have a cousin who is on Remicade, it’s done wonders for him since the day he started. I was hopeful it would do the same for me. So, we began the necessary steps. A colonoscopy, an MRI, blood work and a chest x-ray. We were set. 2016 would be starting off with a round of Remicade, but not without a trip to the emergency room late one December night.
The pain was unbearable! Would you believe me if I said it took over an hour for an ambulance to arrive at my house? Well, it did. I laid on my bathroom floor crying, blacking in out with pain. My husband by my side doing anything he could to help me. Finally, they arrived. Off to the nearest hospital we went. I stayed the night, got zero help or support. Was told to see my GI as soon as possible. Geez, thanks.
A new treatment plan couldn’t come soon enough.
2016 – What’s Next?
I began 2016 with my first Remicade infusion in January. I was set to have treatment every eight weeks. In hindsight, it should have been every four weeks. I didn’t notice much of a change with symptoms. I was still getting horrible stomach pains, regular fatigue and loss of appetite. At this point, I was no longer working. I decided to take a leave of absence from work to really focus on getting better.
Fast forward to May 2016. The Big Move! We made the move back to Toronto, from Winnipeg. Right away I was offered a position with the same company I had been working with for the last 9 years. It was a part time role, which I was perfectly okay with accepting. The summer proved to a busy one. Between work, amusement parks, cottages and family events, I was suffering. I was crying myself to sleep. I was trying my hardest to hide the pain, to hide the constant bathroom visits. But I couldn’t do anymore. My co-workers witnessed first hand what an attack looked like, when they found me laying on the floor in an office. Trying to fight the tears.
October 1, 2016 Richard and I took a quick weekend vacation to London, England to visit some friends and to celebrate our one year wedding anniversary. The trip was lovely. Though, I spent a lot of time in bed. We did sightseeing and tourist type things, but come dark, I was back at the hotel by 9pm ready for bed. October 4th, we flew home and it was the longest seven hours I’ve ever experienced. I was experiencing intense pain. I had no where to lay down, to curl into a ball to help feel okay. I squished my way onto the seats, laying on my husband’s lap. Crying. Begging for this pain to stop. We landed, got into a cab and headed home. I didn’t make it that night. 10pm I screamed for Richard to take me to the hospital. Back to the good ol’ ER we went. Five hours later, I received no help, no medication, no guidance. You gotta love our Canadian Health Care System!
I would stop working at this time. I immediately went on a Short-Term Disability from work, unable to even get out of bed. Thankfully, and gratefully, we had my mom and my in laws to not only help me, but to help take care of our kids. October was rough. The pain was rough. The struggle to get out of bed was rough.
I began seeking help from a Naturopath. Best decision thus far. I did some bloodwork to determine what food I am be sensitive to. Since eliminating those items, (all grains, all dairy, yeast, beef and some other items) I have felt MUCH better in terms of managing and controlling the pain. I am working on managing the energy levels right now.
I’ve completed a CT scan in October which determined that I would need surgery. I was referred to a general surgeon at Humber River Regional Hospital, who turned me away, stating that my Crohn’s was too advanced for him, that he was not confident in his capability to completely help me long term. Which, I respect. I don’t want to be cut open by someone who can’t actually help me. I was then referred to a surgeon at Mount Sinai Hospital in Toronto. She took one look at me, asked a few questions and said, “You won’t be able to wait for me”. Her wait list is so long, I wouldn’t make it. She then referred me to a partner in her office who met with me and said yes to me. THANK YOU!
Now we wait. I am waiting for the call to find out a surgery date. Waiting is nearly impossible. I have good days and bad days. I haven’t experienced any major pain, bloating or cramping since October when I cut out those above listed food items. However, the energy is still lost. I don’t sleep well. I wake up often to use the bathroom. It takes me quite a while to get out of bed in the morning. God bless my husband. Without him, I would be lost. He has been the glue holding this family together throughout my absence. I have not been the best Mom or Wife that one can be. When I am feeling well, I try and do it all, giving him a break. But on my bad days, he takes charge and saves MY day.
January 4th, the day I was admitted to hospital. January 12th, the day of my surgery.
I started the year off laying in a hospital bed for two weeks. I had a small bowel resectioning done. 40-50 cm in total was removed. My crohn’s had become so bad it was attaching itself to the rest of my bowel (the large intestine and the colon). A portion of my sigmoid colon was also removed. As I write this, I am still in recovery mode. Resting at home, taking it easy for a few more weeks.