Testing, Testing... What's Next?

I’m sure its no surprise to say that a lot has happened since the last time I updated this blog… that’s to be expected when I slack off and there’s nearly a year between entries. In the last year, life has had its ups (I became an aunt when my niece was born last December, I was promoted at work) and its downs (my relationship ended and my mental health took a bit of a dip). I reached even more running goals, including finishing my first marathon at Disney last January, and knocking another 5 minutes off of my ½ marathon PR.

It doesn't show well, but HMF had a neat board that sensed your bib chip and encouraged you when you got close! The board told me I was amazing, and after dropping my PR by another 5 minutes, I'm inclined to believe it!

I could go on about the different runs that I’ve been on, and how my relationship ending has strengthened my resolve to achieve yet another goal… but more on that later. When I started this blog years ago, I thought it would be a great way to not only keep friends and family updated on the goings-on of my life and health, but also to document my journey as a Crohn’s Disease patient. And after a few years of no ‘real’ updates… it looks like that’s going to change for me.

Thanks to my Crohn’s, I’m on the ‘5-year plan’ when it comes to colonoscopies. I had actually thought about creating a whole entry ‘documenting’ my experience in prepping for this procedure, but decided to spare you all the… crappy details. Maybe next time (which may be sooner than I’d like, unfortunately). Although I WILL say this… if you need a colonoscopy, INSIST on Clenpiq as your prep agent. It was a 100% better experience than Suprep.

Although I’m REALLY curious about what would have happened if I didn’t use THAT SPECIFIC cup to drink all required liquids like it instructed… would it have not worked as well?

Anyways, I went for a colonoscopy this past October, and what Dr. Johnson saw worried her. My large intestine was fine, with my biopsies being normal. But biopsies of my ileum (the ‘valve’ at the end of the small intestine) showed inflammation, scarring, and ulcerations.

Now, symptom-wise, I can assure you that I’ve been feeling fine. If you’ve followed this blog, you may recall that my number one ‘tell’ that I’m having a flare up is blood/pain when I go to the bathroom, specifically #2. (If you HAVEN'T been following this blog, welcome to the world of a Crohn's Patient! 😁) Less frequently, I’ll experience diarrhea or have stomach cramps/pain. And I haven’t been experiencing any flare up symptoms with a greater frequency… so what’s the problem and why the change?

Any sort of inflammation is never a good thing, that’s pretty obvious. Inflammation and scarring can cause thickening of the walls, narrowing of the intestines, blockages and abscesses (why I was in the hospital for nearly 2 weeks back in 2017), and ultimately, the need for surgical removal of the affected intestine. All of the issues Dr. Johnson saw should have been prevented by the Humira I’ve been injecting on a weekly basis since 2018. And since I’m already injecting Humira at double the indicated rate, there is nowhere else to go with it. I am officially a ‘TNF-Blocker Failure’, and my treatment needs to be changed. The suggested next step is Stelara.

Working in pharmaceuticals has its weird advantages, one of which is a general understanding of where to look and how to read a product’s Prescribing Information. I’m not too proud to admit that I spent an afternoon sitting at a local brewery, nerding out over the Stelara website and PI, writing down questions and making notes on the data that spoke to my specific situation. I didn’t notice any big red flags, so after peppering Dr. Johnson with my questions and talking it out, we both agreed to the change. 

The biggest difference with Stelara is that the loading dose is an infusion, so I get to spend an hour hooked up to an IV for the first injection. After that, I’ll be injecting myself at home every 2 months.

Dr. Johnson’s next ask made a lot of sense, although it wasn't pretty… prior to my first Stelara injection, she was hoping for a couple baseline tests beyond the colonoscopy results. This will let us know if the Stelara is working down the line. The first test was an MRI, to see exactly what’s going on past the ileum in my small intestine. The other test… was basically a stool sample. Let’s just say that whole experience confirmed for me that I could never handle having kids and dealing with poopy diapers.

I had the MRI this past Monday, and the results are already in… unfortunately they confirm the need to switch to Stelara and cross our fingers for results. The easiest way to summarize it is to share part of the message from Dr. Johnson: 

“I am worried about these persistent small intestine findings. Clearly the Humira is not working well. Sadly, I do think you may ultimately require surgical intervention… if you are doing well symptomatically, we can wait to see how you do with the Stelara and either pursue another MRI and/or colonoscopy to confirm if you are doing well clinically. If you do not respond well, I would have a low threshold to have you connect with a surgeon.”

So… that’s currently my next step. My first injection with Stelara is scheduled for the end of this month. From there, as long as my symptoms remain manageable, we’ll give it some time and check in at a later point to confirm that its working. Surgery to remove the ‘problem’ part of my intestine will hopefully be much later down the road… preferably over a year from now, since surgery would really put a damper on my full marathon training.

That’s right… while I’m working with Dr. Johnson to meet my treatment goals, I’ll also be working with a fitness coach to achieve my next running goal: the full Hartford Marathon. Yes, I ran the marathon in Disney (plus some, hopefully I can write an entry about that soon), but it was just that… a Disney marathon, with a 16-minute mile and a 7-hour finish time. Still an achievement for sure, but… I find myself wondering what I’m really capable of when I push myself through 26.2 miles worth of road in front of me. 

And I'm not going to let Crohn's Disease get in the way of that.

🎵Latest Running Jam - Broken and Beautiful, Kelly Clarkson 🎵