Crohn's Disease: 10 Years Later

Tuesday, April 23, 2019

It was sometime last year that I thought I would be great to write a post on my journey with Crohn’s Disease, and how different things were 10 years later. After my colonoscopy, diagnosis, and a brief experience with medication, I turned to more holistic methods to manage my Crohn’s in 2008-2009. I changed my diet. I studied nutrition. I worked on my stress. After 2 weeks of cutting out gluten and dairy I wasn’t in pain anymore, and for a really long time, my symptoms were kept at bay and I thrived. When I thought about writing an update post about my journey with IBD and what things were like 10 years later, I didn't imagine that I would be sharing details of new symptoms and stories of seeing a specialist.

The last time I experienced any major Crohn’s symptoms was four years ago. I noticed a reduction in appetite that persisted for a few weeks, so I tried to get an appointment with my gastroenterologist. I wasn’t going to be able to see him for about 6 weeks, and I figured it would sort itself out before that time. Then I got the flu and it was awful. Then my Crohn’s symptoms came out full force while I was dealing with the flu. And to top things off, I got my period. There was basically a flaring rager of a party happening in my body, and I was an unwelcome guest.

The flu passed. My symptoms started to diminish. I made some tweaks in my diet, and started to feel like myself again.

Fast forward to February of this year when I was on a trip to San Francisco. I was there mostly for work, but I also got to spend a few days exploring the city and soaking up the sunshine. I noticed that my appetite wasn’t showing up in its normal ways, which was especially strange since I had access to so many tasty restaurants and treats in a new city. I also had a bit of a sore throat, which I thought may be contributing to my lack of appetite and I had a canker sore or two appear in my mouth. It was all a bit strange, but I didn’t think too much of it since it was the midst of cold and flu season, and maybe my body was just fighting something off. 

When I got back to Toronto, my appetite didn’t return. I had a dentist appointment, and the hygienist mentioned quite a bit of inflammation in my gums.

Lack of appetite.
Canker sores.

It didn’t hit me quickly, but eventually I started to link these things together and came to the realization that my Crohn’s Disease was rearing its ugly head again. I think it took me some time because it wasn’t presenting as more extreme, obvious symptoms (like diarrhea, blood in the stool, urgency before a bowel movement) and I was in a bit of denial that my disease could re-emerge. “I take good care of myself! I eat well! I am resilient!”

I had a big cry and a heart to heart with my partner. Once I realized what I was dealing with, I identified a few more symptoms: unintentional weight loss over the last couple months, lack of energy, and abdominal pain after eating. I vowed to get some blood work done and make an appointment with my GP and specialist so that I could work on getting better. I talked to those close to me about what I was experiencing, and gave myself permission to slow down. I talked to my lead who was super supportive, and encouraged me to take the time I needed to figure things out and put work second. Workouts stopped. Sleep was a priority. I was going to get to the bottom of this.

And then I fainted on the streetcar during my Monday morning commute.

It started off as a normal Monday. I got dressed and made a smoothie, which I packed in my bag. I normally drink my smoothies at my desk, along with some tea or fruit, or anything else that catches my eye from my work’s breakfast catering. I walked 5 minutes to catch the TTC and got on to a pretty packed streetcar. A couple minutes into the ride, I realized I wasn’t feeling great. I was standing by the stairs and knew we were a couple stops away from a lot of people getting off, so I could get myself a seat when they exited. I started to feel hot, so I unzipped my winter jacket and had the instinct to ask someone for help as my vision started to get a bit weird.

Then I woke up on the ground with some strangers trying to help me up. I had fainted.

A couple of very lovely humans helped me off the streetcar, and one woman walked me to safety and sat me down at a bus shelter on Queen St. She went and got me juice, and helped me figure out a plan and some next steps. We were a couple of blocks away from a hospital so I thought it made the most sense to check myself into the ER and see if they could find anything wrong. She walked me there, and I was so thankful for her kindness.

I spent the morning in the ER where they did an ECG to check my heart and did some basic blood work to see how I was doing. They didn’t find anything glaring and encouraged me to connect with my doctors.

I had a neglected requisition for blood work that I filled the next day and made an appointment with my GP. I tried to get an appointment with the gastroenterologist who diagnosed me with Crohn’s Disease and I saw a few times after, but found out that if you haven’t seen a specialist in over a year, you require a new requisition.

My GP and I chatted about my symptoms, the fainting, and my blood work that had come back. It showed that I was pretty anemic again and she wanted to dig a bit more into my iron levels with some more blood work. She also put in a new request for a gastroenterologist referral, and said that any other tests would go through that new doctor. I was pretty excited when I got an email later that day letting me know I had an appointment with a new gastroenterologist, but that feeling faded pretty quickly once I realized the appointment isn’t until June.

It’s been a couple of weeks since all of this happened, and I’ve been doing my best to process it all.

To be honest, at first I was filled with a whole bunch of feelings of guilt and shame that my symptoms had returned; I really thought this was a thing of the past and had put in so much work to feel good. I’ve talked through those feelings, and have reminded myself that this is an autoimmune disease. You can do everything “right” in the world, and your body can still start attacking itself. I’m thankful for Canadian health care, but it was definitely disheartening to realize I’d need to wait nearly 3 months to see a specialist. I also figure they’ll likely book me in for a colonoscopy, and waiting for that could also take some time, which means it could be late summer or even fall before I have a full understanding of what’s going on. I’d be lying if I said I wasn’t scared about what they’ll find - I feel like I’m back at the beginning again, ten years ago before I was diagnosed. Writing all of this down makes me feel very vulnerable, because it's all the scary stuff in my innermost thoughts, and my instinct is to spare you all of that! But it's real and I think it's important to share.

I’ve managed to work on feeling positive amid all of this uncertainty. I started seeing a naturopath to help me in the interim while I’m waiting to see the gastroenterologist. I’ve started an iron supplement that is already helping with my energy levels. While it’s not fully normal yet, my appetite has returned and I’ve been navigating what types of foods make me feel best, and which ones exacerbate my symptoms. I've been eating smaller meals more frequently, and that seems to be helping. I did a new food sensitivity test, and I’m looking forward to getting the results this week. I haven’t started working out regularly again, but I’ve been doing some gentle yoga and meditating which has been a great brain break. I can feel my Type-A tendencies seeping through all of this, along with my desire to control as much as humanly possible with a really, really great plan. I'm working through that too, and trying to be gentle with myself.

While this isn't the Crohn's Disease update I expected to be sharing, I'm ready to navigate whatever comes next, armed with all of the knowledge and experience I've gained over the last ten years. 

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