What's the Root Cause of My Crohn's Disease?
Wow, I wish I knew the answer to this question.
Does anyone know the answer to this question? That's something I think about all of the time.
We don't truly know the cause of Crohn's
In truth, we do not really know the root cause of IBD. I've heard a variety of things – from mixed genome sequences to environmental triggers to combinations of the 2, but personally, I feel like these things are short answers to a much longer question.
In general, I spent many years during and after my diagnosis journey with IBD wondering what caused my Crohn's disease. How I got it, why I got it, why it took so long to diagnose, and why it took a long time to find a reasonable treatment as well.
Even getting a Crohn's diagnosis was hard
I was a kid that always had a "nervous stomach," but never one that landed me in the hospital. I always tell my IBD story as one that sort of started when I was 21 and living abroad. I struggled with stomach pains and diarrhea enough to go to to the local urgent care to get checked out, but my bloodwork looked normal and everyone chalked up my challenges to "traveler's diarrhea."
Two years later, I was working my first major job out of college and IBD struck me down. I spent months in and out of doctors' offices, testing facilities, and even the emergency room, trying medication after medication that provided little to no relief.
Ultimately, as I've written about several times before, it took me 6.5 years to get a correct Crohn's disease diagnosis, another 1.5 years to find the right medication, and another year after that to find remission.
Not knowing the cause is frustrating
Today, almost 2 decades away from that study abroad set of bloodwork, I feel filled with both frustration and curiosity on what caused my Crohn's. I'll always believe that stress impacted my history with IBD, but if every stressed person I knew had IBD then I would know way more people with IBD.
Recently, I was asked if it mattered to me – what exactly it was that caused my IBD. As a "veteran" patient, I think I wish I knew the answer to this question. Imagine how much easier doctors' appointments would be if I could walk into a new physician and say, "Oh, X caused me to have Crohn's disease, and because of that, Y is and has been the most effective treatment for me. And I hardly ever have flare-ups with unknown origin." Laughable. And dreamable.
Knowing the cause could help with treatment
I think that's the key for me – knowing the root cause of my disease could be helpful in living with my disease. As someone who's had Crohn's for several years, I can't tell you how many times I've ended up in the hospital in the middle of the night in severe pain, or unable to keep anything down, not quite knowing what's happening.
Whether I'm struggling with inflammation or ulceration (trademark symptoms of this disease), whether I've developed a fistula or a fissure or an abscess or an obstruction – and how (how?) any of the above could just happen out of the blue.
The many puzzle pieces of Crohn's
The thing I've learned is there is no "out of the blue." There's simply pieces of the puzzle, that some very intuitive and specialized physicians must put together when we present in front of them, and that perhaps knowing the cause or the influencers of the disease could help us each be "better" patients, more informed, more educated, and with far less suffering.
What about you? How do you feel about not knowing the cause of your IBD?
How open are you about being diagnosed with IBD?