My journey with Crohn's Disease so far

On May 19th, we’re celebrating International IBD day. A day where (hopefully) buildings around the world turn purple in a show of solidarity for everyone who struggles with an Inflammatory Bowel Disease. So today, to highlight this day, not only will I be wearing purple, but I’m going to share my journey with Crohn’s Disease so far. Get cosy, because this is a long one.

Where it all began

Back in September/October of 2021 I started feeling really shit. I was having these weird stomach aches I couldn’t place. Looking at my diet, nothing really flagged for me, though some things did make me really nauseous. After having to skip on dinner several times due to the nausea, I decided to see my physician.

My doctor, the absolute angel he is, took me so seriously and listened to my concerns. He checked my stomach, pushing on it to test the general area that affected me and even checked with an ultrasound, and he came to the conclusion that I had an inflamed bowel. “Can happen to anyone,” he said. I got antibiotics and went on my merry way, thinking everything would be fine now.

Which it was, for a while. I felt fine, I ate normally again and I got my appetite back. But two months later I was back at the doctor’s office. I had lost 40 pounds at that point, had no energy, had to run to the bathroom multiple times a day and felt nauseous after eating 2 bites of dinner, if I could even stomach eating anything.

I went on a wild goose chase on the internet and eventually got my suspicions narrowed down to either Endometriosis or Crohn’s Disease. I’d read up on both and eventually felt okay enough with the idea of them to accept that it could probably be either and I’d have to live with them for the rest of my life. (It did cause my mum to give me a google ban on anything medical, because this shit was not good for my mental health!)

When I went to the doctor’s office the next time, my physician pulled out everything he could think of. He ordered 5 blood tests, testing for everything under the sun. And because he’d asked me “Have you done any research? What do you think it could be?” he agreed to doing a Calprotectine test (this is a marker for inflammation in the digestive tract, and is something that’s always flagging when you've got an IBD). Trust me, I almost pulled out an entire folder of research when he raised this question, but in the end, it did help!

Because, one week later, I got a call.
”I’m referring you to the hospital, your Calprotectine is rating over 500 so it’s really fucking high and we need to get you checked ASAP.”

When I tell you my stomach DROPPED. Something was definitely wrong with me.

The colonoscopy

I still vividly remember my first colonoscopy, even though I was under anesthetic the entire time. I’m not writing this to tell you how much a colonoscopy sucks, but to keep this completely realistic (and yeah, I thought that one really sucked!).

I was due at the hospital at 14:00 on December 21st 2021 Here I was, happy I would be able to enjoy my Christmas. I was scared out of my wits, had to go to the toilet every 5 minutes because of my nerves and the softener that you’re supposed to take to completely empty out your insides. Thankfully, everyone at the hospital was insanely kind and understanding and they took their time explaining the procedure to me without making me feel like a burden.

I won’t go into too much detail about my colonoscopy, but because I was so damn nervous, my heart rate was WAY up there and the anesthetic wore off waayy too quickly. I remember watching the TV-screens and seeing my insides kinda like Willy Wonka’s tunnel and feeling the camera moving around my stomach. It just wasn’t a pleasant experience. They even brought in another doctor to try and maneuver the camera around…

Yeah, I was happy to be home

Since then

January 5th, 2022 I got called by the specialist. The diagnose, Crohn’s Disease was official and we immediately started on medication to try and get the active inflammation down. I got started on something called Mercaptopurine and I ended up taking this for a year. It helped, a bit, but eventually it didn’t do enough to help me live a happy life.
While it works for many people, for me it caused serious anemia and I really started struggling with low energy levels. I live in a bike-centered country, and I couldn’t even ride my bicycle properly!

Everything went okay for a while and while my specialist wasn’t too keen on the infection markers, it all seemed in control enough to keep me going for a while.

In 2023 underwent another colonoscopy because my inflammation markers had risen quite high again. By then, I was actually feeling fine. I’d gotten used to the mercaptopurine and thought I was doing well. I could comfortably go to work without worrying and enjoyed my summer holiday without having to worry about my illness.

This second colonoscopy was, in my opinion, so much better than the first one. They hit me with a double dose of anesthetic and I was high off my ass for a good 2 hours. I don’t remember a thing from this hospital visit. It was wonderful.

Sadly, after the results came back, the specialist called me into the office (and you know it’s bad when you get called into the office). I remember him starting the meeting with “So, how are you doing?” I thought I was doing good, being somewhat healthy and that was my response. He looked at me with such pity…
My colon was seriously infected again and was at the risk of swelling closed. I was shocked, absolutely rocked to my core because I felt fine! Feeling good in my mind meant that everything inside me was doing okay too.

I got the choice between a surgery to remove the infected bit of my colon, or to try biological medication. I visited the surgeon and talked through the pros and cons of the surgery and eventually decided to go with the medication. Since then, since August of 2023, I’ve been the ‘healthiest’ I’ve been so far.

I’m now giving myself biweekly injections of Adulimumab (try saying that 5 times fast), I’m working out again, I know which foods to avoid and I’m generally back to living a full life. I now work parttime at my local bookstore to balance the somewhat physical work I do there and I feel incredible. My inflammation markers have not been this low since getting diagnosed and I’ve been declared to be in clinical remission. I’ve even gone back to the gym to work out again!

So, it’s been quite the journey. I don’t see Crohn’s as a disability, I consider it to be an inconveniece, especially when I just really want to have an egg for breakfast (they currently don’t really agree with me), or when I want to add some sweet corn to my salads (also makes my stomach want to unalive itself).

Here’s to the next I-don’t-know-how-many years! Let’s hope the medical field advances in such a way they can find a way to cure us Crohnies in the future!