When Crohn’s Changed the Conversation
Just when I thought Myasthenia Gravis had won this month’s battle…the story changed.
“Anything you can do, I can do better…”
That classic song kept playing in my head as I reflected on this latest chapter because it perfectly describes what living with polyautoimmunity sometimes feels like.
Just when I thought Myasthenia Gravis had taken center stage…
Crohn’s quietly stepped into the spotlight and said,
“Hold my inflammation.”
If you’ve been following The Dual Diagnosis Diaries, you know that what was supposed to be a routine port removal turned into an unexpected ER visit after my thumb suddenly became swollen and painful. If you missed that chapter, I encourage you to read my previous diary entry, “Unexpected ER Visit,” where I share how a simple outpatient procedure became yet another unexpected adventure.
If there’s one thing I’ve learned over the years, it’s that with polyautoimmunity, the first answer isn’t always the final answer.
At the time, everyone—including me—assumed the swelling was related to the IV placement or perhaps another surprise from my Myasthenia Gravis.
As it turns out…
The more I learned, the more it appeared my symptoms were consistent with another extraintestinal manifestation of Crohn’s disease.
Suddenly, Myasthenia Gravis wasn’t the only suspect anymore.
🧩 Another Piece of the Polyautoimmune Puzzle
Living with multiple autoimmune diseases has taught me something no one ever really prepares you for.
Every new symptom becomes a detective story.
Is it Crohn’s?
Is it Myasthenia Gravis?
Is it a medication side effect?
Did I injure myself?
Or is it something completely unrelated?
Sometimes even the doctors don’t know immediately.
Living with polyautoimmunity means constantly piecing together clues until the picture finally starts to make sense.
🔍 The Plot Twist I Never Saw Coming
After the ER visit, I was discharged wearing a splint, taking antibiotics, and using Tylenol as needed while waiting for the orthopedic referral.
Three days later, the orthopedic office finally called.
Finally!
Then they told me the first available appointment was…
A month away.
Apparently my thumb was expected to patiently remain in a splint while life carried on around it.
While waiting for that appointment, I started doing what many of us living with chronic illnesses eventually become experts at.
Researching.
Initially, I was convinced this had to be related to my IV or Myasthenia Gravis.
The more I researched, the more I discovered that what I was experiencing appeared to be consistent with Crohn’s-related peripheral arthritis and a condition called dactylitis.
That realization completely changed how I was thinking about my swollen thumb.
I honestly sat there staring at my phone thinking…
“Wait…what?”
🦓 Crohn’s Is More Than a Digestive Disease
When most people hear Crohn’s Disease, they immediately think about stomach pain, bathroom emergencies, food restrictions, and inflammation in the digestive tract.
Those assumptions aren’t wrong.
They’re just incomplete.
Crohn’s is a systemic autoimmune disease.
That means the same inflammation attacking the digestive tract can also affect the joints, tendons, skin, eyes, and many other parts of the body.
Apparently…
My thumb decided it wanted to participate too.
✋ Meet Dactylitis—A Word I Never Wanted to Learn
While researching, I discovered something called dactylitis, often nicknamed “sausage fingers.”
Yes…
That’s really what it’s called.
Dactylitis occurs when inflammation affects not only the joints but also the surrounding tendon sheaths, causing an entire finger to become swollen, painful, warm, and sometimes red.
As I read the description, I couldn’t help but laugh.
Not because it was funny.
Because it described my thumb almost perfectly.
I already knew Crohn’s could cause arthritis because it has attacked my toes before.
That wasn’t new.
Learning it could affect my fingers?
Now that was something I hadn’t seen coming.
💡 Why This Matters
If you’re living with Crohn’s Disease and suddenly develop swollen fingers, painful joints, or warmth and redness that doesn’t seem related to an injury, don’t automatically assume it’s something unrelated.
Crohn’s can affect far more than the digestive tract.
While only my healthcare team can determine the cause of my symptoms, learning about extraintestinal manifestations helped me realize there may have been another explanation I hadn’t considered.
I certainly didn’t know that after twenty years of living with this disease.
Sometimes our bodies communicate in ways we don’t expect.
Knowing this could help someone recognize similar symptoms sooner and have an informed conversation with their healthcare team.
💭 Twenty Years with Crohn’s…and I’m Still Learning
One of the biggest misconceptions about chronic illness is that after you’ve lived with it long enough, you’ve seen everything.
I was diagnosed with Crohn’s Disease twenty years ago.
Twenty years.
And somehow, this was the first time I had ever heard of dactylitis.
Living with autoimmune disease is like reading a book where someone keeps adding new chapters after you’ve already reached what you thought was the ending.
Every time you think you’ve learned everything…
Your body says,
“Actually…there’s one more thing.”
🤷🏽♀️ So…Who Should I Call Now?
Here’s where things get interesting.
Now I’m asking myself a question that many people living with chronic illness know all too well.
Do I keep the orthopedic appointment?
Do I schedule an appointment with my gastroenterologist?
Or do I do both?
Since my symptoms appear to be consistent with a possible extraintestinal manifestation of Crohn’s disease—but haven’t been confirmed—I find myself wondering which specialist should take the lead.
Living with multiple autoimmune diseases often means trying to determine which specialist should be driving the bus.
Sometimes it’s gastroenterology.
Sometimes it’s neurology.
Sometimes it’s orthopedics.
Sometimes it’s all of them.
And somehow, we’re expected to know the answer before we even make the appointment.
No one hands you a roadmap for navigating multiple specialists.
Most of the time, you’re simply trying to connect the dots, advocate for yourself, and make the best decision you can while working with your healthcare team.
🤦🏽♀️ Living with Polyautoimmunity
Living with one autoimmune disease is unpredictable.
Living with more than one?
That’s like refereeing siblings who constantly compete for your attention.
Just when Myasthenia Gravis seems to be stealing the spotlight…
Crohn’s quietly walks into the room and says,
“Excuse me…don’t forget about me.”
Sometimes it’s impossible to know which disease is responsible for which symptom.
Sometimes they’re working together.
Sometimes one is flaring while the other is behaving.
And sometimes they seem to have formed a secret alliance whose only mission is keeping me humble.
Maybe I should start charging them both rent.
💜 Why I Keep Sharing These Stories
Every time my body writes a chapter I never asked for…
I write one here.
Because someone else may be living the same story without realizing they aren’t alone.
Living with polyautoimmunity has taught me that my body doesn’t always read the textbook.
Just when I think I’ve figured out one disease…
The other one rewrites the lesson plan.
I don’t have all the answers yet.
I’m still waiting to learn exactly what’s causing my swollen thumb.
But if this experience has taught me anything, it’s that living with polyautoimmunity means keeping an open mind because our bodies don’t always follow the most obvious path.
Every unexpected symptom becomes another opportunity to learn.
Every difficult chapter becomes another opportunity to educate.
While I wouldn’t wish these lessons on anyone, I can choose what I do with them.
That’s why I write.
Because every unexpected chapter has the potential to become someone else’s missing piece.
Because if sharing one swollen thumb helps someone else connect the dots a little sooner…
Then another difficult chapter in my journey has served a purpose.
Maybe that’s the biggest lesson this experience has taught me.
The first answer isn’t always the final answer.
Especially when you’re living with polyautoimmunity.
So…
Just when I thought Myasthenia Gravis had won this month’s competition…
Crohn’s smiled…
Folded its arms…
And quietly said,
“Hold my inflammation.”
Honestly…
Living with polyautoimmunity sometimes feels less like managing chronic illnesses…
And more like breaking up arguments between two toddlers who both insist on being the center of attention.
I just wish one of them would occasionally volunteer for a timeout.
Have you experienced joint pain, swollen fingers, or arthritis related to Crohn’s disease? I’d love to hear about your experience in the comments. Your story might be exactly what someone else needs to read today.
Thank you for taking the time to read this entry from The Dual Diagnosis Diaries. Whether you’re living with chronic illness, supporting someone who is, or simply learning more about invisible illnesses, I hope these stories remind you that you are never alone.
Until next time, take care of yourselves and each other.
Founder • Author • Advocate • Future Wellness Coach
Kia Lorice
The Dual Diagnosis Diaries 💜
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