I really don’t like talking about this stuff. 😉 For a long time I didn’t even want to say the words out loud: Crohn’s Disease. My FB posts will attest to this fact: I think I’ve probably only mentioned my Crohn’s once on my timeline, when I was first diagnosed almost four years ago in September 2010. And I think to some degree, people don’t like talking about this stuff, either. Unless you’re in the medical field, you probably don’t talk regularly about poop and butts and bodily fluids and your colon. I get that.
But it’s important to talk about this stuff, and that’s why I decided to share this post. It’s important to remember that we’re all involved in each other’s journey. It’s important to remember that we’re all dealing with stuff – which is sometimes plainly visible to others, and sometimes not. Knowing those two things fosters so many good things: empathy, compassion, understanding, even patience!
Crohn’s is fascinating to me, like other autoimmune diseases, in that the body’s normal wiring/programming gets out of whack and the immune system starts attacking healthy tissue. Maybe my brain just needs a software upgrade/patch! In the case of Crohn’s, it can happen almost anywhere in the digestive track – from the air intake to the tailpipe, so to speak. In my case, it showed up in the colon, which is fairly typical.
I count myself very fortunate, in that through medication and some diet adjustments, I’ve been able to lead a fairly normal life. I’m not sure others with Crohn’s are so lucky. For me, the initial 6-9 months were a bit rough, but things improved and the last three years have been manageable.
But now, a new phase. For whatever reason, about two months ago I started experiencing new symptoms, popping up in new places. I’ll spare you the gory details, but suffice to say it was definitely not fun. So that prompts a new approach. This diagram (below) sums it up pretty well. For the last 3-4 years I’ve been able to hang out in the orange zone with a corticosteroid (fairly low-dosage). Now I’m moving into the yellow zone. I recently was approved to start taking a long-term medication regime which, if it’s successful, can halt the progress of the disease – aka introduce remission. That sounds pretty good. And I’m really hoping it does work, because the next step is surgery (down there) – and that definitely doesn’t sound fun. So we just take it as it comes. My faith and my family are a great comfort and support.
I am grateful to have been able to still pursue my passions (paddling and music) these last four years; and hope & plan to continue doing so – big plans for this summer and fall! I had a little setback earlier this summer, unfortunately, that primarily affected paddling: it’s kinda hard to be in a boat for long periods of time, and especially tricky when you’re expected to lead / guide / coach. But I’m pleased to say that things are already improving since June, and should allow me to get back on the water more and prepare for some big things in October!
So that’s my journey so far, at least this part of it. There’s plenty of exciting, great things happening too. But I do welcome your thoughts & prayers (sandwiches also accepted) for both Brandi and me; and I offer you mine for you and your journey, whatever the nature. Peace!
