Crohn's: Road to Diagnosis
Normally, I don’t share personal things about myself on the internet. My social media accounts share curated and edited moments: moments that I’m proud of; moments that I’m excited about; or projects that I’m working on. Or, I share issues I’m passionate about and resources that contribute to positive social change. I took a break from blogging over the last few months because life got a little too crazy. As my “welcome back” post, I decided to share a little bit of what's going on.
A few weeks ago, I was diagnosed with Crohn’s disease. I was debating whether or not I should write a post and share my experience beyond my circle of friends and family. On the one hand, sharing my experience may be helpful for others who are also recently diagnosed or experiencing similar symptoms. On the other hand, Crohn’s can be uncomfortable to talk about. There is a stigma around digestive conditions or really anything having to do with more frequent bathroom trips, gas and bloating. It can be embarrassing to make social plans based on proximity to a bathroom or making sure there’s food you can eat that won’t cause a flare. I have always found writing to be a therapeutic outlet for me, so I have decided to share my diagnosis story.
**Trigger Warning**
If you are sensitive to hospitals, medical procedures, bodily fluids, and physical injuries, click here to skip to the end.
The Week Before
For a few weeks, I was experiencing similar symptoms to a peptic ulcer. I was dealing with acid reflux and stomach pain after eating (especially acidic foods). I had also been taking a lot of Advil due to weather headaches, so my local walk-in clinic suggested that I stop taking Advil, limit acidic foods, and monitor symptoms to see if they improve. During the span of a week, I deteriorated very quickly. The pain was getting worse to a point where I would have a dull pain throughout the day and spikes of pain after eating a few bites of food. I was experiencing low grade fevers and extreme fatigue as well as rapid weight loss. Midway through the week I was bedridden from the pain and couldn’t go to work. The vomiting (from both ends) started on Thursday night and continued through to Friday evening; from there, it progressed to vomiting blood. My partner called my doctor’s office and they told him to take me to the hospital.
The ER Visit
With a garbage can in tow, my partner drove me to the nearby hospital. I was too weak to walk in from the car so he carried me to the bench, plopped me into a wheelchair, and wheeled me in. I got through the triage area fairly quickly; it only took about 30min. They asked me a few intake questions which I answered (while vomiting), they gave me an anti-nausea pill, and off I went to the emergency waiting room. From there I was hooked up to an IV for fluids, pain medication and was instructed to not eat or drink anything.
While in the ER, I had blood tests done, a CT scan, and two ultrasounds. My diagnosis went from a possible ulcer to a suspected appendicitis. After the CT scan, I was called in to talk to the ER doctor and she told me “we are 90% sure it is Crohn’s disease, in which case, you’re not going home tonight”. I just looked at her and thought, OK, what now? What’s going to happen next? She explained to me that I had to be admitted to the hospital so they could do more tests to confirm and also to get my nutrient levels up because I was dangerously deficient in several vitamins. I was listening and nodding, trying to absorb all the information I could out of the conversation and asking as many questions as I could come up with. My partner wheeled me back to the waiting room and then that's when it hit me like a ton of bricks and I burst into tears. The weight of having an incurable chronic disease came down on me and I realized that my entire life is going to change from this day forward.
The time was now 3am and the oncall nurse let me know that they had a bed shortage upstairs in the main hospital but they were able to find an empty ER room for me. The room itself had an examination table and a private bathroom (thankfully). They gave me some extra sheets so I made a makeshift pillow by wrapping my sweater around one of the blanket rolls. My partner was exhausted at this point so I told him he could go home and get some sleep, and I slept on the examination table that night.
Being Admitted
The next day there was a space open for me on the 6th floor so I was transferred to an isolation room. I spent a total of seven days in the hospital. In that time, I had a bone density scan, colonoscopy, multiple blood tests, IV drips, a chest x-ray and blood thinner injections (it’s a spring loaded needle in the stomach which was the worst). I had multiple visits from the hospital doctor assigned to me, the registered dietician, and my new gastroenterologist (who is now my main doctor for all things Crohn’s). They took the time to explain to me that being diagnosed with Crohn’s is not my fault, but it also means that, to give me the best chance at keeping the disease from progressing, my diet needs to change and I need to lower my stress level (for those of you who know me personally, you know that’s a tall order). They also let me know that it looks like I’ve had Crohn’s for over a year which explains a lot of my GI issues that I have been experiencing (and brushing off/ignoring) since the beginning of 2020.
The registered dietician in particular made the biggest impact with me. I let her know that I work in science so she would bring me research articles and have more in-depth conversations about new and emerging treatments for IBD/IBS. She emphasized that Crohn’s treatment is holistic (mind and body) and that mental health is a huge component. She also gave me a bunch of diet resources as well which I will discuss in another post. Overall, I had a really positive experience in the hospital and I felt like they adequately prepared me for going home and what my next steps are going to be. With a steroid prescription, iron, and vitamin D in hand, I was discharged on a Saturday morning.
What Happens Next?
I’ve always used this blog as my own personal playground. A place on the internet where I can write about things I’m interested in, and share things I’ve made. Moving forward that won’t change, but I will be incorporating Crohn’s topics here and there like nutrition, fitness, mental health, and also updates on my treatment journey. If you’ve read up until this point, thank you, and hope you’ll stick around for the next post which will focus on my first few days home from the hospital.
