I was in a bad place when I received my diagnosis of Ulcerative Colitis on January 1, 2022. The plan was to use medication to get better, and then use diet and lifestyle to keep me well. Needless to say, medication never really got me better. I had some glimmers of better, but nothing long lasting, and some came with side effects that felt worse than my UC.
One thing they don't tell you when you're starting any medication is the rate of effectiveness. Many of the medications I tried have remission rates of around 30% or lower.
The other thing nobody told me is that for up to one third of patients with UC, medication is either not successful or accompanied by complications. Both of these were the case for me.
The first medication I tried was a gut specific anti-inflammatory called Mezavant. This drug was a friend's miracle drug, keeping her UC in remission for many years. I went into it hopeful. It got me to about 80% better but I continued to have symptoms, so I had my first experience with steroids.
Prednisone was promised to be another miracle drug, a powerful anti-inflammatory. I've talked to many who have had rapid and amazing responses. I went into it very hopeful, but by the end of the 2 weeks I wasn't noticing any obvious changes, other than the many side effects I had developed.
Some were nothing more than an irritation - such as a chronic cough (not really what you wanted in February of 2022) and moon face (this is where your face just gets suddenly very puffy - usually for me this presented as a double chin). Then there were the life-interrupting side effects such as insomnia, terrible anxiety and panic attacks that had me unable to work or drive a car. During this time I basically did jigsaw puzzles to keep the anxiety at a relatively manageable level, and force myself on walks with Kody.
This photo was taken during one of these walks. I love this photo and at the same time it takes me right back to a hard time. If you look closely, you'll see that my moon face (chin) was starting to make an appearance.
Prednisone is not a great long term solution - in fact the side effects that come with long term use are much more terrifying than the ones I experienced (such as bone loss). It is meant to quickly get one into a state of remission, then be tapered off. It just didn't work for me.
Because the steroids were ineffective I was put on my first immunosuppressant called Imuran. I went into this one a little bit nervous, I didn't love the idea that my immune system would be suppressed. I didn't know what that would mean for my health in general. To my surprise it seemed to be helping within a couple of weeks, but then at the 6-week mark I was plagued with the most intense nausea and vomiting that would start within 30 minutes of taking it. The force with which my body rejected it was enough to break blood vessels in and around my eyes. Eventually the vomiting was accompanied by a fever and I was taken off the med.
It was around this time I had begun the most strict version of carnivore (see Chapter 1: Healing My Relationship With Food), and was able to get into remission for the first time. I'm not sure if this was due to the diet, or the lingering effects of the Imuran, but regardless I was relieved to be able to spend April to September without any new medications - I was fairly side-effected out by this point.
I remained on Mezavant alone until my symptoms flared up in August.
Prednisone round 2 was luckily mostly side effect free, I guess my body figured it out. Unfortunately it was no more effective than my first time around.
The next level of treatment was biologicals. This would be a little different than my past meds in that I would have to travel to an infusion centre and have this medication administered by IV. The first biologic I tried was Remicade. It is an immunosuppressant that targets a specific part of the immune system called TNF (a protein that causes inflammation in the body).
I had the highest of hopes, as I had heard many accounts from people who said Remicade had been their miracle drug when nothing else had worked.
To explain how truly amazing this drug is, I'll take you through the timeline of my experience with it.
September 1st - 7th: I was in an extreme flare (for me that looked like 15+ bloody bowel movements a day, extreme bloating and pain). I had settled on the fact that I would be unable to participate in my favourite trail race, Chase the Coyote on the 17th of September.
September 8th: My first Remicade infusion.
September 10th: Signs of healing were beginning, but I remained pretty skeptical.
September 12th: My skepticism was replaced by hopefulness, things were obviously improving by the day.
September 15th: I was seeing improvement to the point where I knew I would likely be well enough to run in 2 days.
September 17th: Back in clinical remission (no signs of UC present), I ran the 16km trail race, taking it slow and easy, but feeling great.
Remicade was my miracle drug.
September 20th: I went for my second infusion, excited and hopeful.
September 21st - October 7th: These weeks were everything to me. My energy was returning, I was able to start expanding my diet, I felt like I was on top of the world.
This is where my story takes a detour.
Remicade gave me 4 months of remission, but the "on top of the world" feeling only lasted for 3 weeks because October 8th was the day everything changed.
It started with a little bit of numbness in my fingers and toes.
What happened next would lead me into my greatest challenge yet and some of my darkest days.
Next up in My Story: Chapter 3: Finding My Limit