Readers and members of Crohnology know that we take the science of Crohn’s and Ulcerative Colitis seriously. One of our goals is to help people with those diseases better understand that science, so they can make the best decisions possible about their care.
So this may seem strange, but here goes: you can have both Crohn’s and Ulcerative Colitis.
Yes, there are important differences between the two, but those differences barely matter outside your doctor’s office, and how we understand and talk about our disease in the real world is more important.
The Differences Between Crohn’s And UC
There are important differences between Crohn’s and Ulcerative Colitis. Here’s a table I poached from the Stanford School of Medicine.
|Ulcerative Colitis||Crohn’s Disease|
|Inflammation limited to mucosa and superficial submucosa||Transmural inflammation|
|Contiguous disease, no skip lesions||Discontinuous, patchy disease with skip lesions|
|Limited to colon||May involve entire GI tract|
|No granulomas||Granulomas may be present|
|Predominantly neutrophilic infiltrate with crypt abscesses||Predominantly lympho-histiocytic infiltrate|
|Perinuclear anti-neutrophilic cytoplasmic antibody (pANCA) favors ulcerative colitis||Anti-Saccharomyces cerevisiae antibody (ASCA) favors Crohn disease|
This differences are important, but every single one is clinical; you’d need specialized equipment in a doctor’s office to even notice them. I would need a medical dictionary or a couple hours on Google just to explain what most of them mean.
So while it may matter a ton to my doctors whether or not granulomas are present, the moment I leave their office it makes hardly any difference at all. As a patient, I would never know — and never care — whether my infiltrate was lympho-histiocytic or neutrophilic.
How Doctors Think
Doctors are trained to think in terms of difference: the ability to draw distinctions — to say, “this is different from that” — is an essential part of medical training. It is the basic mental task in medicine.
But here’s the thing: Ulcerative Colitis and Crohn’s disease aren’t really all that different. In fact, they are not even really diseases as such — they’re diagnoses, and that’s an important difference. We use the words disease, diagnosis, and illness interchangeably — but they really ought to mean different things.
In the case of Crohn’s and UC, there are good reasons to think the diagnoses aren’t all that helpful. First is that the labels probably represent a cluster of diseases that are different from each other in subtle ways. Second is that those labels don’t indicate specific mechanisms; we still don’t know what causes the diseases.
Both diagnoses refer to a basket of symptoms; we don’t really know what connects the symptoms. For Ulcerative Colitis, the name is the symptom: ulcers and inflammation in the colon. It’s also worth noting that Dr. Crohn did not want the disease named after him; he preferred ‘regional enteritis’ or ‘cicatrizing enterocolitis’, both of which also describe symptoms. (And shouldn’t we name diseases for the doctor who cure them, anyways?)
What It Means To Have A Disease
Let’s get philosophical for a moment and ask, what does it mean to ‘have’ a disease?
When doctors say, ‘you have X disease’, what they mean is: “the clinical manifestations of your illness are consistent with the description of X disease.” And usually, that’s good enough for them to do their jobs.
In fact, doctors need a diagnosis to feel like they’re really doing their jobs. Read articles or blog posts by anyone with a difficult-to-diagnose disease — which includes lots of IBD patients — and you will see how incredibly bad most doctors are at their jobs when they cannot identify a specific diagnosis.
The result is that labels like Crohn’s and UC help doctors before they help patients. If getting the right diagnosis is important, it’s only because it helps doctors find the right treatment. But the label itself, for the reasons outlined above, often gives patients a false sense of precision and understanding — where medicine really does not understand these diseases yet. It’s not true saying you have Ulcerative Colitis or Crohn’s has the same certainty as saying you have brown eyes or a Honda Civic.
Many patients — if not most — will see their disease vary in important ways from their diagnosis. Having a diagnosis like Crohn’s or UC does not mean you have all of the disease. A person can have Crohn’s without diarrhea or fever or fistulas, for example. A person can have symptoms that are beyond the diagnosis, too — and lots of us have medical problems that are due to our disease but not officially part of the diagnosis. Often, the diagnosis makes it harder to deal with those extra symptoms, when doctors refuse to acknowledge them.
So saying “I have (X) disease” implies some things that are probably not true, and misses some things that are true. It is a shorthand that is mostly useful in a clinical setting, but it comes nowhere close to fully describing a given person’s illness.
What Your Disease Means In The Real World
As sick people, we have whatever symptoms we have, and we have to deal with those symptoms as they come. What our doctors call those symptoms — Crohn’s, UC, indeterminate, whatever — only matters as much as the label helps us manage our disease.
For some people, saying they have Crohn’s and Ulcerative Colitis helps them understand what’s going on — maybe because they’ve been told they have Crohn’s with ulcers in the colon. Or maybe their doctor has told them they have both. In Europe, Crohn’s is often called Crohn’s Colitis, which makes things even muddier.
But whether or not it represents a misunderstanding of the disease is not as important as whether their understanding helps them manage the disease. In my case, I don’t find either label all that useful, so I have stopped calling my disease ‘Crohn’s’. Everywhere but the doctor’s office, I tell people I have inflammatory bowel disease.
We owe it to each other, moreover, not to attack another patient’s understanding of their disease. If you are active in IBD social media, you have probably seen this happen: a newcomer writes something like, “I have Crohn’s and Ulcerative Colitis; can you help me?” Then people pile on to insist “You can’t have both!!!” and the original poster feels humiliated and nobody actually helps the person. This post is mostly a plea to stop that.
If a patient does not see the difference between Crohn’s and Ulcerative Colitis, that is a problem for their doctor to solve. As patients, it’s not our job to enforce distinctions that doctors create for us. Those distinctions hardly matter at all in the real world — and they matter not at all in forums, in blogs, on Facebook, or any other social media.
So yes: you can have both Crohn’s and Ulcerative Colitis, if that helps you deal with your illness. There are important differences between the two, but go with what makes sense to you.