Which Do I Have: Crohn's or Ulcerative Colitis?
When I think of the word "diagnosis," I get a sense of nagging anxiety, but also hope. With a diagnosis, there is the hope that you will receive the right treatment and feel better.
Over time, I've learned to be less afraid of getting a diagnosis, and more focused on what the steps are after one. When it comes to my IBD, though, I was recently been told I could have either UC or Crohn's disease. I've been labeled "indeterminate" for the time being.
A confusing IBD diagnosis
I've been confused by my diagnosis before. Much of my paperwork has stated "ulcerative proctitis," which is apparently because my inflammation is low, often in the rectum area. Still, doctors have always called it "ulcerative colitis" or "UC" in my appointments. This all changed last year when I started seeing an IBD-specialized GI doctor.
My current doctor is well-versed in IBD, having even been part of the team working on bringing Remicade to FDA trials. My first appointment with him was all-encompassing and he ordered blood work, stool samples, and vaccinations to protect me against pneumonia and shingles as I headed onto a biologic.
He also asked me how my doctors knew I had UC and not Crohn's. I replied that I didn't know, but that I assumed the inflammation patterns observed during a colonoscopy might have told them.
Crohn's versus ulcerative colitis
Unfortunately, there are cases when Crohn's has looked like UC, especially when it is confined to the lower colon. My doctor wanted to take a look himself, especially because an MRI had shown some possible inflammation in the terminal ileum, which would likely indicate Crohn's.
I was worried about being diagnosed with Crohn's instead of UC, mostly because of the higher incidence of surgery among Crohn's patients. After my colonoscopy with my new doctor, the question of proper diagnosis was the first on my mind.
"It's probably UC," my doctor said. I know he meant it, since this is the diagnosis he now uses on insurance forms. "But we can't always be absolutely sure. Unfortunately, that's how this works sometimes."
Do I have Crohn's or colitis? How do I treat it?
There was an uncertainty with the way my inflammation was presenting that I had to get used to. Luckily, I had lots options for biologics – most that treat both Crohn's and UC – to start off on. This means that despite my indeterminate diagnosis, my treatment plan will remain the same.
For now, that means biologics every 8 weeks. According to my doctor's NP, if we ever get to the point where we are considering surgery, then the actual diagnosis might matter more. Since all of this, I have seen a huge reduction in symptoms and have my life back, so I feel confident about my doctor's ability to treat this, even without a clear-cut diagnosis.
My colonoscopy may be unclear, but my symptoms aren't
At first, I wanted – badly – to have an accurate diagnosis. I didn't want to be somewhere in between, unsure of whose experiences I could connect to. What I have realized is that the diagnosis matters less than the experience. I know what it is like to be sick with bleeding, diarrhea, and fatigue. I know what it means to be terrified of leaving the house for fear of an accident. Even if I can't tell someone that I definitively have UC or Crohn's, I can say, I understand you and you understand me.
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