IBD Awareness Month Blog 1: My Diagnosis Story

November is Crohn’s and Colitis Awareness Month in Canada and I thought I would start off my telling my diagnosis story.

My journey with IBD started in Grade 11/12 (although I didn’t know it at the time). My earliest symptoms were food aversions, early satiety, random fevers, and random bouts of cramping and loose stools. These symptoms came and went and at the beginning were fairly spread apart so I didn’t think much of them. What is interesting to note is that these symptoms started after I started hormone replacement therapy (aka birth control) for my Turner Syndrome. After I was diagnosed I learned that there is a huge connection between TS, hormone replacement therapy, and the development of autoimmune disorders, particularly IBD.

The summer after Grade 12 I began to notice another symptom when we went to buy me new clothes for college- weight loss. It wasn’t significant yet but it was enough that my clothes began to fit differently. I was actually very happy with this symptom because I had gained a lot of weight from the birth control. At the end of the summer my parents drove me to Bible School in Saskatchewan and I will never forget my first meal there because they were serving one of my favourite meals: burgers and french fries. What stands out to me from this meal is that I could not finish my burger which was unusual for me as growing up I had a huge love for food and never had a problem eating except when it came to bread due to gluten intolerance. Although I had been experiencing early satiety it had never gotten to the point where I couldn’t finish a meal. My mom was quick to assure me that it was probably just nerves from moving away from home. However my symptoms continued throughout that semester and reached their peak when I went home for Christmas and I got what we assumed was the stomach flu. I have since learned that stress is a huge trigger for IBD flares so in a way my mom was right. My symptoms continued to worsen that year as my dad lost his job and I continued to adjust to living away from home. However, by the time the school year ended I was feeling better had managed to gain back some of the weight I’d lost. However, the stress of packing up all my stuff and moving back home sent me right back into a flare.

That summer I worked two jobs to try and earn some money to go back to Bible School for a second year. Being away from home so much meant that it was easier to hide my symptoms and the pain I was in. It seems so silly now but growing up I was terrified of going to the doctor even though I was required to go a few times a year for different tests due to my Turner Syndrome. I knew that, given the symptoms I was experiencing, a colonoscopy would probably be in order and I didn’t want to have to be put under. Looking back, God had given me a very clear sense that the problem was with my intestines and I wish I had been more diligent in getting answers but I had really enjoyed my first year at Bible School and didn’t want anything to jeopardize that.

My second year of Bible School is the first time I went to a doctor after a very embarrassing incident in the cafeteria one night. I had never had to deal with doctors on my own before and I explained my symptoms as best I could but wasn’t as forthright as I should have been. I mentioned the possibility of Crohn’s or Colitis to the doctor as my Uncle had been diagnosed the year before but he brushed it off saying that the area I was having pain wasn’t usual for Colitis (however later I learned that it was where Crohn’s shows up) and I wasn’t seeing blood in my stools. He told me it was probably just stress and to take Gravol for the nausea. He also ordered an ultrasound which was never followed up on. I know that many of my fellow Crohn’s and Colitis warriors can relate to the frustration of feeling brushed off my doctors. However, by the end of the year the flare had mostly settled down and I was able to enjoy my graduation.

Living back at home seemed to be a very good thing for my body and the flare began to let up even more as I got more sleep and didn’t have the stress of living in a dorm full of girls with different personalities and ways of doing things than me. I began my Medical Office Assistant training at Douglas College and for the next two years felt mostly ok though I was still in some amount of pain every day. Still, my energy and appetite were better than they had been.

A few months after graduation I got a job with Fraser Health and adjusting to the work world was hard and I began to go in and out of flares again. The summer of 2016 was when the pain started becoming more constant and beyond what I could handle. As I mentioned previously, I had to do a lot of routine tests each year due to Turner Syndrome and blood work was one of them. My bloodwork had always been normal but this was the first time that something came back off- my albumin. After looking up what could cause low albumin, malnutrition from Crohn’s, Colitis or Celiac disease seemed the most likely scenario. I emailed my endocrinologist that I thought this was a strong possibility and that I was concerned by the result but the only response I received was that my last celiac test had been negative and that she wasn’t concerned by the result. Frustrated, I again tried to broach the subject at my appointment with her a few weeks later, explaining that I was having a lot of stomach pain and trouble eating. This time she told me that it was probably lactose intolerance and to try taking lactaid. I wasn’t satisfied by this answer and as my health continued to decline, that fall I finally reached out to my family doctor. Unfortunately we hadn’t been able to find a family doctor yet in the city where we had moved for my dads new job so the trek to my appointments was long but I was glad that someone was finally taking me seriously. She ran a whole bunch of bloodwork to rule some things out before finally ordering a colonoscopy. At that point I was in so much pain that I was willing to do anything. Unfortunately the surgeons were booked up until the new year and I spent the holidays getting worse and worse. By the time I had my meet and greet with the surgeon in the beginning of January, my body was under so much stress that my heart rate was through the roof. He made sure I got the soonest available scope appointment but it was still a month out. I never made it to the appointment. Instead I ended up in the ER two weeks later when the pain reached a breaking point. After doing an abdominal exam the ER doctor told us it was probably Crohn’s but that I would need a CT scan and scope to confirm the diagnosis. The CT scan was indicative enough (by that time I was obstructed and had several abscesses) that I was diagnosed that evening in the ER and admitted to the hospital for the first time in my life. I met my GI doctor the next day but I don’t really remember much of that visit as I was on so many drugs at that point. A scope was done a few days later where the biopsy confirmed the diagnosis of Crohn’s and I had my first experience with prednisone which, alongside Imuran and Inflectra, worked wonders and for the first time in years I began to start feeling like myself again.

Hospital selfie! Lol.

I’ve often wondered if the trajectory that my disease took (if you want to hear about that you can read my old blog posts) and eventual surgery could have been avoided had I fought harder to get answers sooner but I’ve come to the conclusion that there’s no use to living in the land of what ifs. What’s done is done and although it was a long, hard road to get there, I’m just grateful to finally be in remission. My parting piece of advice would be this: if you are struggling with unusual symptoms, please don’t be afraid to speak up like I was. You deserve to get answers and feel your best before its too late.

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