This post will make some of you mad.
You will argue with me.
I encourage you all to constructively discuss this on my facebook fan page here if you like. This is a post i’ve been wanting to do for awhile. In fact, Jackie and I have a video we are going to be doing that goes along with this soon…hopefully soon. We have written to, and spoken with doctors and surgeons to get as much medical backing for this as we could because we KNOW some of you are going to argue with us.
YOU CAN’T HAVE CROHN’S DISEASE AND ULCERATIVE COLITIS!
There. I said it.
You can’t. It drives me nuts when I see someone out there saying they have both diseases. Especially when they are playing the pity card and trying to get people to feel sorry for them, "my life is REALLY hard because I have both crohn’s disease and ulcerative colitis!!!" No you don’t! What is even worse (I saw this yesterday) is when I see a leader in the IBD community such as a well known blogger or vlogger or the founder of an organization spreading false information. These are people others look up to for information and if they give out wrong info others read it and believe it (drives me crazy). Don’t get me wrong, I LOVE the fact that there are so many support sites out there and so much education. I just ask that you are all careful with what you read and where it is coming from, and check that information out. Do your own research and make sure you have the facts. Not just about this, but with anything! Even cross check information I give you, I encourage you to do so!
Alright, I can feel some of your ears burning already. You’ve probably stopped reading and are writing me an angry comment back right now that your doctor told you that you have both diseases. It is my guess that you heard your doctor wrong, that your doctor is a moron, or that you have Crohn’s colitis.
There IS a diagnosis called Crohn’s colitis and I think this is where people are getting confused. Being diagnosed with Crohn’s colitis does not mean you have both Crohn’s disease and ulcerative colitis. It means you have Crohn’s disease that is found only in your colon. The word colitis means inflammation of the colon. (“col” = colon “itis” inflammation of)Therefore Crohn’s colitis means Crohn’s disease in your colon/large bowel.
Here is the definition of Crohn’s colitis from CCFA’s website: Affects the colon only. Symptoms include diarrhea, rectal bleeding, and disease around the anus (abscess, fistulas, ulcers). Skin lesions and joint pains are more common in this form of Crohn’s than in others. You can find that page here.
There is also this definition from About.com here: A type of Crohn’s disease that is found only in the large intestine. This type of Crohn’s disease is differentiated from ulcerative colitis (which is also found only in the large intestine) by two characteristics:
- healthy and diseased (or inflamed) sections alternate along the colon (in ulcerative colitis, the inflammation is continuous).
- the rectum may not show any disease (the rectum is often involved in ulcerative colitis).
So there you go. Crohn’s colitis is Crohn’s disease that is only found in the colon. I think that this is the reason for most of the misunderstanding out there. New patients or patients without a lot of knowledge on IBD hear the diagnosis of Crohn’s colitis and think that they have both diseases.
Another definition that can be confusing is Indeterminate colitis. You get this diagnosis when doctors are unclear whether the disease in your colon is Crohn’s disease or ulcerative colitis. Over time they may be able to tell and your diagnosis could change to one or the other or it may stay as indeterminate.
Dr. Zimmerman from the University of Michigan wrote in an email to Jackie and myself: Sometimes we use the term “indeterminate colitis” when it is not clear whether the colitis is UC or Crohn’s colitis. Indeterminate colitis can “declare” itself to be Crohn’s or UC over time, or can just stay indeterminate.
I hope that this helps clear things up a bit for all of you. Understand that both Crohn’s disease and ulcerative colitis are complex diseases and sometimes they don’t fit neatly into a definition box. Doctors continue to learn more and more about them and the characteristics between the two often overlap because they are so similar. I am going to leave you with two emails below from two different GI doctors from two different hospitals who have responded to us in writing, though we did talk to other doctors/surgeons in person and all agree that you cannot have both diseases. We wrote to them explaining we are advocates in the IBD community and would be doing a video/blog on how you can’t have both Crohn’s disease and ulcerative colitis and wanted to know if we were in fact right and what they had to say about it. I think a lot goes wrong in the community when understanding definitions. If anything, I hope that this blog encourages you to do your own research and understand your disease better. That has always been my goal with this blog, to give you knowledge about your disease and offer a entertaining way to get support and information. I open this up to discussion and would like to hear your thoughts. Did your doctor tell you that you have both diseases? Did you think you did but realized that you just had the definitions wrong?
Email from Dr. Ryan Madanick of UNC (gutcheckblog.com):
The question you ask is more semantic than anything, so let me just make sure there are some definitions that are understood first.
Colitis itself just means inflammation of the colon.
Colitis can have many etiologies (i.e., causes), including infections (like amoeba, E coli), ischemia (meaning loss of oxygen), etc. Crohn’s and ulcerative colitis are potential idiopathic causes of colitis (meaning they don’t have an identifiable cause).
Crohn’s disease can affect any part of the GI tract, including the colon. When it does, it’s called Crohn’s colitis. However, the most common organ affected in Crohn’s disease.
Ulcerative colitis is a disease that is limited to the colon, although both it and Crohn’s disease can have associated conditions outside of the GI tract.
It is not uncommon for patients to be first diagnosed with UC, then get subsequently diagnosed with Crohn’s (as it seems you may have been). There are a lot of reasons this happens. The most common reason is that the endoscopy looks like UC and there is no other evidence of disease outside of the colon. When this happens, it DOES NOT MEAN THEY HAVE BOTH Crohn’s and UC. BUT, it means that there original diagnosis of UC as the cause of their colitis was probably not; instead Crohn’s was probably the cause.
Ultimately, both Crohn’s and UC are complex disorders for which a single, unifying cause has not yet been identified. They are diseases that develop because of complex interactions between a human’s genetic makeup and the environment (including intestinal bacteria, foods, etc) that lead to inflammation and other pathologic changes of the intestine. We as doctors label them broadly as UC and Crohn’s, but there is much more to a disease than the label.
Email from Dr. Zimmerman at the University of Michigan:
Sometimes doctors are not very precise and use the word “colitis” to mean different things at different times, based on the context – sometimes they say “colitis” and mean ulcerative colitis, sometimes “colitis” is used as a general term for inflammation in the colon that could be from Crohn’s disease, ulcerative colitis, infection, certain medications etc. (I am guilty of this myself and should be more careful!)
You are right that Crohn’s affects any part of the GI tract and ulcerative colitis primarily the colon. While Crohn’s can affect any part of the GI tract, it does not typically affect all areas at once, and so we generally describe the patient’s disease by their areas of involvement – Crohn’s colitis (inflammation only in the colon), ileitis (ileum), or the most common form, ileocolitis (ileum and colon), etc. So patients with Crohn’s colitis technically have “colitis” and Crohn’s disease (though not ulcerative colitis).
To make things more complex there is a time component such that the area of involvement of Crohn’s can change over time, though generally Crohn’s does not travel around a lot. Also, it is not uncommon for patients with ulcerative colitis to develop, over time, features that are more suggestive of Crohn’s disease. For example, if a patient with the diagnosis of ulcerative colitis develops a fistula, then doctors might change the diagnosis from ulcerative colitis to Crohn’s disease. In these cases it is never clear if the patient had Crohn’s disease all along or whether it switched for some reason. It is less likely for patients who are thought to have Crohn’s disease to switch their diagnosis to ulcerative colitis, though this can occur and seems to happen when patients have Crohn’s colitis. Sometimes we use the term “indeterminate colitis” when it is not clear whether the colitis is UC or Crohn’s colitis. Indeterminate colitis can “declare” itself to be Crohn’s or UC over time, or can just stay indeterminate. One final complexity, though it is not typical, ulcerative colitis patients can have inflammation in the small intestinal, stomach, esophagus or mouth. This doesn’t really jive with the classic teaching that ulcerative colitis is only in the colon, but it is indeed true that UC patients can have inflammation outside the colon and still have ulcerative colitis.
The more we know about these diseases, the more overlap we recognize, and the more complex things seem. Good luck with your blog and feel free to copy and paste this info.Thanks for your question and thanks for being responsible about the information you are adding to the internet! All the best -
*Disclaimer: If you like what i’m posting and want to spread IBD awareness go for it! But please credit myself/this blog and always link back. Thanks! -Sara