It’s been a while since I’ve written, and I’ve truly missed it. Those of you who have followed along for a while know that life rarely stays quiet for long around here. I wish I could say this update is all sunshine and good news, but as always, it’s a little bit of both.
Up until mid-May, things were mostly status quo. Not ideal, given the daily medications and the lifelong reality of scar tissue, but I had reached a baseline physically and mentally and had come to terms with my new norm. At my last appointments with Dr. G and my GI psychologist, we agreed to check in again in June and hoped things would still be in an okay spot. The mouth sores were improving, and I was counting on an uneventful trip across the pond.
We were thrilled to finally be on our way to Italy to see Ryan as he finished his study abroad semester in Florence. Getting to be there for that last stretch with him, after months of following along from afar, was everything. We were also so looking forward to Portugal, and I want to preface this by saying we had an amazing time for most of the trip. We logged thousands of steps each day touring Florence, enjoyed a rainy day in Tuscan wine country, and made our way to Portugal where we fell in love with Lisbon and especially northern Portugal, Porto, and the Douro Valley.
But there are about 5 days in the middle of this trip I’d like a re-do and a refund on.
I came armed with extra ostomy supplies after my nightmare trip to Europe last fall, where leaks left me completely unprepared. I felt ready this time. What I was not ready for was an abscess, a derailed itinerary, and an ER visit in Portugal. Yes, this is how my life rolls.
About four days in, I started developing intense pain at my old surgery site where everything was removed. It’s not the most comfortable thing to talk about, but it is what it is. I have what’s called a “Barbie butt” closure, and the pain escalated quickly. By the morning we were supposed to take a train to a small coastal Italian town, I told Craig I was worried there wouldn’t be a large hospital nearby with English-speaking staff. I was fairly certain I needed to be seen. We were originally headed to Lisbon three days later, but instead we cut our losses on the Airbnb, bought new plane tickets, and flew to Lisbon early to be near a hospital.
Sure enough, I needed it. Thankfully the abscess drained on its own and I didn’t need surgery, but the experience was something else. The hospital was efficient but quirky in ways that would take too long to explain. The English was decent, but the treatment plan for an abscess in an immunocompromised Crohn’s patient was, let’s say, unsettling. Thirty minutes of IV pain medication, a lot of nodding, some Portuguese exchanges between the ER doctor and the colorectal surgeon, and I was sent on my way without an antibiotic. I contacted Dr. G’s office immediately and started one as soon as I was home. A second abscess episode followed a few days later but didn’t require another ER visit, just a lot of deep breaths through the pain.
Despite all of that, the rest of the trip was truly wonderful. I’m so grateful I got to experience northern Portugal. The long flight home, sitting on my very sore butt, was rough, but thank goodness for travel pillows. Back home, I had urgent follow-ups with GI, colorectal surgery, and an MRI, but no surgery was needed. These abscesses can sometimes progress into severe fistulas requiring complicated procedures and I feel lucky to have dodged that.
Unfortunately, while the abscess itself has mostly resolved, I’ve been dealing with significant pain that’s likely related to scar tissue. The past 5 to 6 days have been pretty awful, with episodes that feel like partial small bowel obstructions. I’m working through it with Dr. G’s team and hoping for some answers soon. A CT Enterography yesterday showed several dilated small bowel loops and I’m still waiting to understand what that means. I won’t pretend I’m not a little worried that this may be fibrosis related and not treatable with medication, but I can’t know that yet.
In the meantime, I’m doing my best to get through each day, and I’m deeply grateful for the doctors and nurses who are in my corner. It’s going to take considerably more mental strength I’ve been using to live this way, and I’m still working on wrapping my head around that.
What I do know is that I couldn’t be more thankful to serve on the Board of the Crohn’s and Colitis Foundation, to be surrounded by people who truly get what this disease is like. We have our Colorado Take Steps walk this weekend, and next weekend I’m zipping off to Salt Lake City to help with that walk alongside some of my favorite staff members.
There are days I wonder whether being this involved makes the reality harder to escape. But I truly cannot imagine doing this life without knowing there’s a Foundation out there and a community that understands.