Crohnology: The Future of IBD Care?

Posted on Posted in Actions for Change, Experiments, Science & Research, Treatments, Website

When Sean Ahrens isn’t hoping over fences, pretending to be a secret agent on a mission to find the nearest bathroom, he’s programming a website called Crohnology.com that he hopes will lead to discovering the cure for his inflammatory bowel disease.

Sean was diagnosed at the age of 12 with Crohn’s disease, and has seen his fair share of debilitating symptoms, some of which have sent him to the hospital in excruciating pain.

Crohn’s disease is not easy to diagnose or treat. There are a limited number of conventional treatment options where some of the treatments only work on some of the patients.

The goal of CrohnsEnd.com, and my documentary WANTED: Crohn’s End is to educate patients and doctors about alternative treatment options. The alternative options are not well known, and often disregarded by doctors because research is lacking. The complexity of the disease makes choosing acceptable treatments very difficult, often because lives are on the line.

Crohnology.com is an exciting social networking and health data tracking website that could disrupt the status quo in treatment practices for IBD patients.

When I interviewed Sean in his San Francisco apartment, he told me it takes seventeen years for a medical discovery to reach mainstream consciousness.

To a suffering IBD patient, that’s seventeen years of their digestive tract being eaten from the inside out by chronic, vicious inflammation. That’s seventeen years of pain, multiple surgeries, emotional scars, and potentially even death from the complications of IBD.

“That seventeen years should be 1 year, should be 6 months, it should be no time at all. As soon as we have a validated cure, or a validated treatment, it should be available for people to do.”

Crohnology.com could be the answer because it is a place for IBD patients with Crohn’s disease or ulcerative colitis to come together, and share what’s working for them. The goal is for IBD patients all over the world to track their health, share the data, and help others overcome their IBD.

I’ve been using Crohnology.com for a better part of this year, but only recently have I begun to leverage most of its health data tracking features. As you’ll see below, it uses a slider from 1 to 100 for patients to input how well they are feeling on a given day. If the patient visits every day, and records how they feel that day, it creates a line graph, showing all the ups and downs one experiences when dealing with IBD.

Crohnology.com health dash

Patients can also log a short comment about whatever they like related to their health, such as what they ate, how well they slept, treatments they tried, etc. In the near future, these short comments will be placed on the graph. If a patient feels horrible, say a 35, and writes a comment that they ate a rock and drank crude oil, they will see that comment when they hover their mouse over the part of the graph.

crohnology.com health log

Other helpful areas of the website are treatments that you and other patients have, and are trying. There’s also a very popular social question and answer part of the website where patients ask questions and anyone can provide an answer. The remaining part of the website includes means to meet others in your local area, plus an event creation tool.

My experience with Crohnology.com has been really positive. I still keep a lot of data in my excel sheets, but I could see myself migrating over to Crohnology.com because the visual data is so key. It’s not enough to simply input data. The data must be analyzed to recognized patterns. Patterns are best seen on a graph. Looking at my graph, you can clearly see I have overall felt really well, but within that tier, my symptoms have been up and down in the last 3 months.

This helps to ensure that if I’m having an off day symptom wise, that it’s just a bad day and I needn’t freak out. By looking at my graph, as long as I continue to do what I have been, I can predict that my symptoms will subside quickly within a day or two.

It’s really powerful to have this visual data to help me make decisions about how I manage my Crohn’s.

But the search for my personal cure, Sean’s cure, and many other cures for each IBD patient continues, and that’s where you come in. I’m not going to wait until medical research comes up with a cure 10 – 20 years from now. I know my cure exists, somewhere, out there. But I need people like you, with IBD to share your experiences with me so that I can learn about treatment options I haven’t tried yet.

In essence, that is what I am doing with my documentary, WANTED: Crohn’s End, but instead of flying to talk with 1000’s of IBD patients, Crohnology.com provides a central location for all of us to come together, and have a conversation about what is working for each of us.

Please join this important endeavor, so that we can help each other find our cures for IBD.

PS: First 10 people to comment below or like this article on Facebook, or retweet this on Twitter will get a direct invitation to join the Crohnology.com network, assuming you don’t already have an account.