In 2010 we got a diagnosis of ulcerative colitis for our son Isaac who was then 27 months old. For a year and a half we had been concerned about his persistent soft stools. Now that we're going down the road of living with IBD in our house, we want to be able to share our story, connect with similar families or individuals, and increase our awareness of the experience of others.

Some of our related interests are diet, kids and families with IBD, and discussing and sharing experiences.

Sunday, February 6, 2011

IBD around the world

I got curious about the incidence of IBD in various countries. Immediately google delivered:

abstracts of a few journal articles about IBD in various countries

Here it looks like as you can expect. Lots of mystery and different conclusions where IBD appears and even how it appears. Overall it looks like a disease of affluence which is impacted at least as much by environmental factors (like diet) as genetics.

One of the obvious problems, however, is the idea that many IBD patients can go a lifetime without medical treatment or diagnosis. And since it is a personal and sort of taboo matter, and since nobody really wants to be probed, I imagine it tends to be under-represented in studies. In order to get more statistics, I'd love to be in charge of large broad-based survey studies of adults with ulcers, asthma, allergies, arthritis, and various GI pathologies, asking questions such as "Can you verify if you had excessive diarrhea as a toddler? Bloody stool ever?" and so on.

Then, continuing systematically, we want a giant spreadsheet of patients organizable by symptoms, indications, diagnoses, ages, gender, family history, treatments that work, treatments that don't work, allergies, and you name it. And then we try to sift out various types of IBD and see what patterns we can find. Or even if we do some statistical analysis on the hundreds of thousands of US patients. Am I too impatient here to think that at least we can gather up patients who react/don't react similarly, and see if we can get to some physiological tendencies/causes?

I know bright scientific minds are on this, but now that it has hit home so closely, I want to be closer to the cutting edge of research I guess.

2 comments:

  1. It would be difficult to narrow down such a study, as IBD is very diverse in symptoms. For example, I've never had diarrhea problems with Crohns, though I had skin tags for 10 years before my diagnosis, and abdominal pain for 4 years before diagnosis (which the doctors, of course, thought was something else). Knowing the symptoms now, I could probably trace Crohns back 25 years.

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  2. This is what I mean though. For example, there should be some specification of non-diarrhea Crohn's. It seems like if you grouped together many patients with similar symptoms, maybe we could start to see some patterns about what treatments seem best and what some causes might be.

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