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.

How Do These Diagnoses Impact The Evolving Knowledge of inflammatory bowel disease?

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.

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. 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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (9)
  • Cmj2112
    2 months ago

    I was originally diagnosed with UC and my doctor said that is what I have but all along I felt that I had CD. The last two biopsies they did showed indeterminate colitis plus I was low on B12 and protein. I have lost 50lbs of weight. I think the original diagnosis was wrong.

  • thedancingcrohnie moderator
    5 months ago

    Love this post. I think the labeling does nothing for a patient. I agree that it should just be called IBD. As for me, I’ve had my diagnosis changed a couple of times. First it was Crohn’s. Then Crohn’s Colitis. Then back to Crohn’s. I too thought that when it got changed to Crohn’s Colitis, I had both Crohn’s and Ulcerative Colitis. It’s just all so confusing.

    Always dancing,
    Elizabeth (team member)

  • menganopr
    8 months ago

    How much I have identified with this article!!! I was diagnosed with UC almost 8 years ago. Last month my diagnosis change to CD after a granuloma was found in an endoscopy. At the beginning I felt confused and thought how was possible to be improperly diagnosed so many years. But reading after reading I’m starting to understand so many details.

  • Marisa Lauren Troy moderator author
    7 months ago

    I am so glad you found this article helpful! It is such a confusing topic. I really think it would be easier for patients if it was all called “inflammatory bowel disease.” Please know you’re not alone with this. So many people go through diagnosis changes, unfortunately. Thanks a lot for taking the time to read and comment! We are always here for support 🙂

  • MatthewD
    2 years ago

    This is a great article! I could go on and on about how I hate the naming conventions used for this disease, but I’ll keep it short and say my least favorite is the “indeterminate” colitis label. I was told I had class classic ulcerative colitis in 1986 and yet I was diagnosed with Crohn’s 16 years after. So even when doctors are 100% positive in the diagnosis of UC, they can still be 100% wrong. Why even bother calling something “indeterminate” then?

  • Connie9
    1 year ago

    I also believe that the decisive nature of the labels really hangs people up. If we are being honest here, one isn’t any better or worse than the other, both Crohn’s and UC effect the body ‘as a whole’ the same way, and being labeled ‘indeterminate’ because you suffer from things that make it impossible to tell the difference, it makes you feel like you have even less control and answers regarding your body. If the only real distinction between Crohn’s and UC is location…why not just call them BOTH IBD, get on with it, and do away with the labels? It would sure make us 10-15% folks happy to not feel in some exclusionary limbo.

  • Marisa Lauren Troy moderator author
    11 months ago

    I agree 10000% with both of you! I despise the language used. Crohns, Crohns Colitis, Indeterminate Colitis, ulcerative colitis are all so confusing. And like Matthew said, doctors can and are often never 100% sure a person has Crohns or UC so it just causes more confusion for patients and caregivers. I also agree Connie in that there becomes this comparison between them when everyone is completely different. I believe the reason doctors must label (for now, at least) is because of how the FDA approves medications. Hopefully soon, it will all just be inflammatory bowel disease. Thanks so much for taking the time to read and comment.

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