Recently I stumbled across some information about an epidemiology study on Crohn’s and ulcerative colitis. Although this research is not studying treatments and cures, I found the information very interesting. You see, I know so many people who are suffering from severe symptoms of IBD and struggle every day. I also know that there is a movement to educate the public about IBD. After seeing these numbers, I am starting to understand why it is so difficult for people to take IBD seriously. Most people diagnosed have mild symptoms. So I can understand why there would be confusion about why having IBD would be so bad.
For those who do not know, epidemiologists study the patterns and trends of disease. I will give you bits of this information and the resources as I get them. Today I will talk about the incidences and risks of hospitalizations and surgeries for both UC and Crohn’s. These studies were long range studies from 1940 to the early 2000’s.
Let’s start with UC. So over this time frame, more men will be diagnosed with UC than women. The peak is of course during a person’s 20’s but could be diagnosed in their 70’s or later. Over the years it has appeared that the number of people getting diagnosed are leveling out a bit. There does not appear to be an increase of the number of people being diagnosed with UC. Now this next part is interesting. We’re talking the risk of hospitalization with UC. If you have been diagnosed with UC, your risk of having to be hospitalized withing the first five years is about 30%. That means about only one out of three people with UC will have to go to the hospital. Within ten years it is about 39% and in twenty it is abut 50%. This means that anywhere from 2/3 to1/2 of the people have mild symptoms. That is a lot more people than I would have thought. They are the ones that can manage their disease with few medications and maybe diet. For the rest of you, you are the chosen few.
How about we move on to the risk of a colectomy in UC patients? Within the first five years after diagnosis about 13% of patients need a colectomy. In ten years it rises to about 20% and in twenty-five years, only 28%. This indicates that only 1 in 3 people with UC will have to have their colon or part of their colon removed. If you are diagnosed, you have a one in three chance of having that surgery.
Now for some stats on CD. Across the age ranges for people diagnosed with CD, male and female are pretty much equally diagnosed up to approximately the age of 30 years. After that age more men are diagnosed with CD than women. The peak is the same as UC, in the 20’s age range, and people can be diagnosed well into the 70’s and later. Over the time frame of 1940 to the 2000’s the number of people being diagnosed with CD is going up. The incidence rate is higher. In comparison with UC, there are still more people being diagnosed with UC than CD, but CD is catching up.
With CD we didn’t even get a chart on hospitalizations. It went straight to your first resection. So here we go. Within five years of being diagnosed the chance of a resection is about 40%, at ten years about 50%, and twenty years about 60%. Wow. That’s not fun. So next stats are for a second resection. A person who has had one resection has about a 20% chance of getting a second one within five years of the first one, about 35% within ten years, and about 47% within twenty years. I’ve heard people say that it isn’t if you will need surgery for your CD, but when. The odds are not in our favor.
You might say, “so what?” If I were a newly diagnosed person, these are some statistics that put my new disease in a big picture. I know that when my son was diagnosed I had no idea what Crohn’s disease was. Never even heard of it. I think information like this, even though it isn’t about what treatment is best or when are we ever going to get a cure, it does put it into better perspective. It gives you some expectations. It can help you gauge how well (or not) well you are compared to the overall IBD population. Bottom line it is more information. Plus, for people who are doing research for treatments and a cure, it raises questions. Why does the incidence rate of women drop away from men in their 30’s? Why is UC leveling off while CD is increasing?
I will have more to share in the coming weeks. Please feel free to share my blog with people you know.
Hugs, thoughts, and prayers,
Finally have a link to the video. http://medprofvideos.mayoclinic.org/videos/grand-rounds-tales-from-the-frozen-wasteland-the-epidemiology-and-natural-history-of-crohn-s-disease-and-ulcerative-colitis-in-olmsted-county