The Lesser Known IBDs: Indeterminate Colitis & Crohn's Colitis

I am not sure how many of you have heard the term indeterminate colitis or Crohn’s colitis but I wanted to talk a little bit about those diagnoses. Most of us have heard of “Crohn’s disease” and “ulcerative colitis” but these two other types of IBD can sometimes be hard to understand.

Let's make it simple!

What is indeterminate colitis?

Basically, a person is diagnosed with indeterminate colitis when it is unclear whether a person is suffering from Crohn’s disease or ulcerative colitis (UC). Oftentimes, since UC and Crohn’s present so similarly, the diagnosis can be difficult to make. Pathology reports often remain inconclusive. That is also why many people are initially diagnosed with ulcerative colitis only to find out years later that they actually have Crohn’s disease.

When an individual is diagnosed with indeterminate colitis, that person absolutely has inflammatory bowel disease but the type remains unclear.

What is Crohn’s colitis?

Crohn’s colitis is commonly misunderstood because people tend to believe that this diagnosis means they have BOTH ulcerative colitis and Crohn’s disease which is simply not true. It is medically impossible to have both forms of inflammatory bowel disease (IBD) even though I know many patients get confused and think otherwise.

Crohns colitis means the pathology and biopsies indicate Crohn’s disease but it is limited to a person’s large intestine. Some people who are diagnosed with Crohn's colitis end up having their diagnosis changed to Crohn’s disease but that is not the case for everyone.

There are different types of IBD

Many prominent IBD specialists want to do away with the labels “Crohn’s disease” and “ulcerative colitis” and just call it “inflammatory bowel disease.” The more research that is being done, the more researchers and physicians are seeing that IBD is a complex spectrum that doesn’t always fit in those two categories. Physicians continue to use those terms because the FDA approves certain medications for certain conditions and as of now, an “IBD” diagnosis does not really fly with insurance companies. It is also why I believe more people are being diagnosed with indeterminate colitis.

My diagnosis initially was ulcerative colitis and then it was changed to indeterminate colitis. Right before my first surgery, my diagnosis went back to ulcerative colitis, even though I had a lot of complications that were indicative of Crohn’s disease.

Treatment options for inflammatory bowel diseases

When I was first diagnosed, biologics weren’t approved for ulcerative colitis even though many gastroenterologists were finding success with their UC patients. The problem is with insurance. I was thankfully able to receive Remicade because indeterminate colitis, to the insurance company, meant Crohn’s disease - for which Remicade was approved at that time. This helped to postpone my first surgery for over a year.

The more I think about it, the more I realize that if everyone who had a form of IBD was just diagnosed with inflammatory bowel disease (as opposed to Crohn’s disease, ulcerative colitis, or Crohn’s colitis), it might make it easier for patients to receive the treatment they need. It also wouldn't create a divide among patients and physicians.

Diagnosis of IBD can change

What I mean by that is given inflammatory bowel disease can change in your body at any point in time, people who are diagnosed with Crohn’s colitis might wonder why all of a sudden they are having issues with their small bowel. Or, a person who was diagnosed with ulcerative colitis and was given a J-pouch may wonder why they are having tons of fistulas and abscesses since their small intestine is “supposed” to be healthy.

There is just so much unknown about this disease and I wanted to both explain a couple terms that aren’t used as often, and share some of my experiences and thoughts related to the labels/diagnosis we are given as IBD patients.

What is your diagnosis? Has it changed at all? Do you ever feel like you were improperly diagnosed? Would love to hear any additional thoughts or comments on this topic!

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