January 22, 2017 is a day I will never forget. It was one of the hardest days and yet best days of my life as I was finally given an answer to the painful digestive issues that had plagued me for years. I know I’ve talked a lot about the trouble I’ve had since with medication side effects and the development of a second autoimmune condition (psoriasis) as well as narrowing and obstruction but as the third year anniversary of my diagnosis approaches I am truly able to appreciate how far I’ve come since that day. I wanted to share my diagnosis story and everything I went through leading up to it in the hopes that I can help others who may be suffering and getting dismissed by doctors the way I was. Disclaimer: below I will be talking about the symptoms I experienced so if you are triggered by stuff like that, you might want to stop reading.
Looking back, I now realize that my journey with Crohn’s actually started when I was 16/17. In Grade 10, I was started on hormone replacement therapy. This is important because there is a huge link between birth control and the development of Crohn’s, particularly in girls with a propensity towards autoimmune condition such as those with TS, something they didn’t tell us at the time. In Grade 11, I noticed that I began to get sick more often than I had in the past with random low grade fevers (98-99) and stomach aches, particularly on my right side which I now know is where the ileum is, that would resolve as soon as they came. In Grade 12 I was working really hard to get good grades for scholarships which meant a lot of stress, pressure on myself, and late nights spent finishing homework. At this same time I began to experience more fatigue (something I just chalked up to staying up late) and random bouts of intense abdominal cramping and diarrhea as well as feelings of early fullness/nausea to the point where I would have to throw out bits of my lunch because I couldn’t finish them. At the end of my Grade 12 year while shopping for new pants, I also discovered that I had gone down a size and lost about 3 pounds. Because I was slightly overweight from the hormone replacement therapy, this wasn’t that concerning and I was actually really happy about this. I now realise that these were early signs of Crohn’s disease but at this point these “flares” weren’t lasting very long so it would be another seven years until I would get diagnosed.
The summer after graduation I worked at Splashdown. I remember one shift where a co-worker pointed out to me that my color didn’t look great and I was sent home. The next day I remember getting very dizzy and almost passing out at least two times, something I’d never experience before. Again this resolved itself and my family decided I must have had the flu even though none of them ended up getting sick. This would not be the last time I would have a fainting spell so I now believe this to be another sign of Crohn’s.
That fall (2010) I began Bible college at Bethany in Hepburn, Saskatchewan. I remember that our first meal there was hamburgers and not being able to finish my plate again due to returning nausea/bloating/early fullness. This concerned my mom but she and I both decided that I must just be nervous about living away from home and having to say goodbye to her and my dad. This time, however, my symptoms did not resolve nearly as quickly and the nausea was getting more intense and not finishing my plate was becoming a usual thing. By the time I came home at Christmas my weight loss was noticeable to the point where my mom began commenting. This was also the time when the vomiting started and I had another bout of dizzy spells. I also began to look very pale. We again thought it was the flu but my appetite never really returned. My mom asked me at that time if I wanted to go see our family doctor before going back to school and I wish now that I had said yes but back then I had a huge fear of doctors (one of the major reasons I let my symptoms go on so long) so I declined assuring her that I would be fine and off I went back to Saskatchewan.
The second half of my first year I continued to be sick with horrible adominal cramps (usually at night), nausea (especially when walking into the cafeteria at Bethany and smelling the fresh baked bread), diarrhea, weight loss, fatigue, dizzy spells, and vomiting spells. I remember having one of these spells in the cafeteria with my parents at the end of the year and being so embarrassed (I’m sure my fellow IBDers can relate). Again, we chalked it up to nerves, the flu etc. However, I did bring it up to my endocrinologist at my appointment when she commented on my weight loss and what I had been doing but was dismissed. I didn’t push the issue because of my fear of doctors and not wanting a camera up my you know where.
Fast forward to my second year at Bethany. The vomiting and cramping in my first semester became more frequent to the point where after one very terrifying and embarrassing incident I finally asked to be taken to the doctor. The walk in doctor asked me a few questions and I was too embarrassed to be honest about the diarrhea but did bring up the fact that there was a case of colitis in my family and could it be that? He said my pain was on the wrong side (umm yeah because I had inflammation in my small bowel, NOT my colon…sigh) and was told that I was most likely anxious and to take gravol for the nausea (it didn’t help). He also ordered a pelvic ultrasound but of course nothing showed up. Frustrated I tried to relax more and get more sleep which did seem to help and I did somewhat better second semester. However my symptoms never went away completely and pain, nausea as well as a fear of food/eating became my new normal. (See part two for the rest of my journey)