For those of you unfamiliar with Crohnology, it’s a revolutionary social media site for people with Crohn’s disease and Ulcerative Colitis. This is patient-to-patient sharing on a new level. I’m not up to the task of fully describing it right now, so I will refer you to their blog. Also, watch this video. I feel grateful to participate in this “patient revolution.”

So what’s going on?  What causes Crohn’s and ulcerative colitis?  We know that it starts with our immune system.  The purpose of our immune system is to attack bacteria, viruses and other foreign microorganisms that invade our body.  Normally, the gastro-intestinal system contains harmless bacteria that our body uses to help digestion and those bacteria are usually safe.  Unfortunately in people with Crohn’s and ulcerative colitis, there’s a glitch.  The immune system starts to attack these digestive bacteria causing an inflammation of the intestines.  Now inflammation is a normal response of the immune system, except, in this instance, the inflammation goes on and on and starts to harm the intestines, causing ulcers, intestinal wall thickening and other symptoms.

How would a healthy active 12-year old child react to getting Crohn’s? “You’re an average, normal kid in school” and all of a sudden you start having problems with your digestive system.  That’s Sean Ahrens’ story. “It was after a course of antibiotics for an ear-infection, which I got a lot of,” Ahrens remembers.  “I’ve lived with Crohn‘s for 14 years now.”

But Ahrens hasn’t taken his diagnosis lying down.  At age 26, he is a patient activist and creator of “Crohnology” a web-based patient community with attitude, and a lot of innovation. “I’m building as a new way for patients to share health information online,” Sean relates.

Crohn’s and ulcerative colitis are part of a larger group of disorders called “autoimmune conditions.” With these conditions, the immune system goes out of kilter, attacking the body.  Rheumatoid arthritis, lupus, fibromyalgia and multiple schlerosis are just a few of these disorders.  “Once diagnosed, I…realized I had a condition to which doctors had no solution.  That was really scary.”  In fact, 40 million Americans have heard those words from their physicians, “Autoimmune conditions—CATEGORICALLY have no cure.,“ Ahrens states.

Ahrens’s reaction was to look for help outside traditional medicine.  “When your doctor doesn’t give you a solution to your problem, you don’t just say OK .  You don’t just “trust” that we (conventional medicine) know everything. You search wide and far for things that will work,” Ahrens says.  In his quest for answers, he turned to fellow sufferers.  “I started the support group because it was connecting people that I found so valuable.”

Ahrens was at University of California-Berkley by then, studying computer science, “I was always really into programming.”  At the same time his support group kept growing, “when the group got too big for every patient to remember each other’s health experience— I found it a good idea to build a solution that could scale… I saw things like Facebook, Wikipedia and realized maybe this model could apply to patients sharing knowledge, “ Ahrens says.  “Crohnology” is the name of his creation.

Currently “Crohnology” has over 2,400 patients with Crohn’s and colitis from 40 different countries around the world.

 So how should people go about finding solutions to what ails them?  Ahrens is realistic about what is available on the web, “I still think the web is a bit of a wild west when it comes to health information,” he admits, which is why he’s trying a new approach, “I’m trying to program a better way to share this information — I think it requires a new platform. “

That platform is cutting edge, “The key parts of Crohnology are health-tracking, social network, and treatment knowledge-base.  We have an online health tracking interface that lets patients update their health over time.  That health tracking can take place on the patient’s mobile phone too. Over a simple web interface, or through SMS (text messaging). patients on Crohnology can also create a treatment “timeline”.  That treatment timeline has what treatments (medicines, supplements, diets, or mind & body) taken and when.”  In other words, patient can create their own abridged medical record online with current infographics.

Additionally, Ahrens is interested in people meeting people. “Patients can choose to go by just their first name and profile photo. But that’s the lowest you can go. I believe that real name and real photo thing is a requirement for real connection and engagement online.”  So anonymity is not an option with Crohnology, “We give patients tools to “meetup” in person, and establish REAL relationships with other patients. This is key,” he believes.

From the data that has already been collected, Ahrens has found that patients who crohnology have 99% of their patient experience behind them, which means a lot of “story” telling vs. tracking. The web is better for constructing data-dense history.”

“My fundamental tenet is that patients are experts in their own experience, and that experience is VASTLY underappreciated.”  Ahrens believes that patient advocacy is changing.  “I think online communities are the new patient advocacy groups.  It’s like the newspaper versus online news.  The medium has changed, and so the advocacy needs to move here.  If you think about patient advocacy groups, they are still, in a way, this old model of top down information.  Patient communities allow for the social revolution that has happened everywhere else on the web to happen to advocacy. Why do we need an intermediary to connect to other patients? There is no need,” Ahrens believes.

If you are worried about patient privacy, Ahrens isn’t. “Patients can identify themselves by just their first name and profile picture.  Patients own their data: they can download, port it to another service, or delete it completely at any time. As a result of this, I can literally tell you that crohnology, is the best corpus of patient knowledge that exists on the web. If you have Crohns or colitis, @crohnology is literally the best place you can go to learn about your options.”  For people who have heard there’s no way to cure a condition, having that amount of information would be wonderful!

Ahrens’ work is being supported by angel investors like Esther Dyson.  There is interest from others.  “But  what’s great about this is I’m not really interested in the money. Yeah I want to do well, but I’m trying to change medicine.   I think that single fact radically changes what we’re able to accomplish. “

Physicians haven’t been quick to embrace patient communities. “I think it’s kind of like asking a teacher to engage in a student discussion group .  They would help add insight, but the value is the exchange of peer experience,” Ahrens feels there is a place for physicians in patient communities, “but I’m not waiting around for them to join and get involved. I’m going right to patients to help them now.”

To learn about Sean Ahrens experience with Crohn’s Disease, a video by Larry Chu has been developed and posted here.  To learn more about “Crohnology” and to stay abreast of news and updates on the site, add yourself to this site.

For a transcript of the November 29, 2012 twitter chat with Sean Ahrens  go here.

Since the explosion of the world wide web, many people have turned to going online to look for help for problems.  For many people with IBD, going to a doctor doesn’t always help.  They treat the physical problems, sometimes, and very rarely treat the mental problems.  Because of the lack of a bedside manner, patients with IBD look for treatment online in the form of forums, social medias and medical based sites.

One new site designed to help those with many illnesses, including IBD is http://www.meddik.com.  This is a new site which just came on the scene.  It was developed by 2 medical students, one of which has a relative with IBD.  The site is a user based site but also carries links to medical articles.  The design behind the site is that you can research not just the inner workings of your disease but get first hand help from people who also suffer from the same.

Another site, with a heavier user base is http://www.crohnology.com.  This site is made so that you can connect with people who not only have your disease but live near you.  You can also ask questions to everyone on the site.  You can look up people taking the same meds as you or have the same side effects or even symptoms.

If you are looking for an upbeat site with a dose of comedy, turn to http://www.ihaveuc.com.  Adam has UC and treats his disease with comedy.  He believes that laughter heals.  He also has on his site a place to post and answer questions from other IBDers.  Adam also post informative information about the disease and the treatments used.

If you’re looking for a feminine side to IBD, there is no shortage of that either.  Sara at http://www.inflamed-and-untamed.com is probably the most recognizable face for IBD.  She talks about a lot of personal dealings with Crohn’s and having a J-Pouch.  She has become an inspiration to so many people and when she is ill, she in overwhelmed with well wishers.

Another person who is big on helping others is Kelly.  She has a page on Facebook called I-Have-A-Bad-Tummy-With-An-Optimistic-Mind-Chronic-Illness-Support.  Kelly is the face of being brave and strong with IBD as she has been very sick this year but still manages to come online to help others.  She is yet another big inspiration to many.

If you have an ostomy and love videos then check out Maggie at www,youtube.com/LetsTalkIBD.   She shows everyone that just because you don’t have part or all of your intestines doesn’t mean you can’t live life.  She shows that you can do whatever you want to do, whether it is swimming in a bikini or going to college.  Your life doesn’t stop just because you wear a bag on your side.  In fact she shows just how life is just starting after surgery.

Are you athletic?  Do you have IBD?  Well, your life isn’t over.  Brian at http://www.intenseintestines and Heidi from http://www.ostomyoutdoors.com both show that just because you have a disease doesn’t mean you can’t enjoy exercise.  Whether it is hiking, running or biking..you can do it all.

With so much help out there online doctors need to step up their game.  They can’t give the advice that any of these sites can offer.  Most doctors don’t have enough time to spend with their patients to find out what is going on in their minds.  It is no wonder why everyone turns to the internet now.

So what is the site all about.  Well, first off, everyone on the site has IBD.  So whoever you talk to will be able to understand just what you are talking about.  Second, you can look on a map and find people in your area.  You can see who is taking the same meds as you, or have had the same surgery’s.  You can ask questions to everyone regardless if you are following them.  You can also write blogs on there and share them with everyone.

So what makes this different from other sites.  Well, for one thing, the guy that started it, Sean Ahrens, has Crohn’s disease.  He understands what we go through and molds his site to those needs.  The other uniqueness is the map feature.  On most sites you don’t know where anyone is from unless they tell you.  From the moment you sign on, you can see all the people who live near you.  There is also a feature where you can create a Meet Up so you can plan a get together.

Right now, it is still in its infancy so expect to see more great things from them.  I can see them being a leading social website for people with IBD.  No one there will judge you.  They all have gone through the pain that we have at one point and many are there to help you through the rough time.  I know because I have had some questions answered there myself.

I look forward to seeing what the next year brings for this great website.  So, after you are finished reading my blog, head on over and join up.  You won’t be disappointed.  You can also find them on Twitter @Crohnology and on Facebook https://www.facebook.com/Crohnology

Crohnology: The Crohn’s and Colitis Social Network

I’ve written in the past about Sean Ahren and Will Cole’s project, Crohnology. It’s a social networking site specifically for IBD folks, and it’s an incredibly useful site for sharing information regarding treatments, remedies, and coping tools for living with IBD.

I bring it up again because in the last few weeks, Sean and Will have been VERY industrious, adding a ton of new features, as well as making the layout a lot more usable. If you haven’t visited Crohnology yet (or if you have and weren’t hooked right away), I’d strongly encourage you to check it out. The project is still in the beta phase, but every day, I’m seeing improvements. It gets more polished and higher performance all the time. I’ve really appreciated Sean and Will’s availability through the whole process… they’ve been incredibly responsive to my bug reports and feature requests.

Even better than that, though, is the fact that the user base is growing and growing. More users means more interesting questions and lots more useful information. If you’re an IBD person who’s actively engaged in your health care, you owe it to yourself to give Crohnology a try. If you’re already on the site, and we haven’t connected yet, be sure to friend me!

Are you already using Crohnology? What do you think of it?

Thanks Sean and Will for all your hard work for the community, and providing IBD folks with a flexible and useful place to gather and exchange information!

Do you Crohnology?.

I’ve been spending a fair amount of time there, and I can tell you that exciting things are happening. The site is still in private beta, but I have 9 invites remaining. Go check it out here: Crohnology If you’re interested in joining, I’d love to send you an invite. Just follow this blog, and leave a comment. Looking forward to seeing you there!

Like any piece of software at the beta phase, part of the responsibility of using it is recognizing that it’s growing and changing over time and to allow for a certain amount of quirkiness as that process occurs. I have found that Sean and Will have been *incredibly* responsive to bug reports, feature requests, etc. I know that Sean and the rest of the Crohnology community would welcome your voice.

It’s likely that Crohnology co-founder and RockHealth participant  Sean Ahrens said it best during his pitch: “Being an entrenched player in healthtech puts you at a  disadvantage.” Crohnology is a patient-to-patient information sharing platform where people with crohn’s disease and colitis can connect with each other and share knowledge and experiences.

RockHealth Demo Day was the rare opportunity to be in the presence a batch of companies whose sole mission is to transform unhealthy habits through technology. It was a truly exhilarating experience, and here’s a look at a few of the standout companies.

BitGym

BitGym is a deceptively simple concept, but the team may have found the holy grail. Combine the lean-back fun of Nintendo’s Super Mario Kart with the aerobic potential of an exercise bike. Put your iPhone or iPad on the magazine rack of an exercise bike, and BitGym app will capture the vibrations of your movements to speed up or slow down a car driving on a race track. The forward-facing camera tracks eye movements so that you can steer. All of a sudden a nation of couch potatoes can get fitness and video games in one.

CellScope

CellScope is going to unlock the power of smartphone cameras for assisting in medical diagnosis. The idea of doing smartphone-based health diagnostics is not entirely new, but the practice has been confined largely to parts of the world where access to medical care is limited. Each year more than 30,000 million children are taken to the doctor for ear infections, but often a diagnosis could be rendered just by looking at a photo. With a special light attachment fastened to an iPhone or comparable mobile device, CellScope patients can relay information to their doctor or health professional without having to travel.

BrainBot

BrainBot is dedicated to helping people lead better, less stressful lives through meditation. The company has a smartphone app that is connected to a brainwave-sensing device worn on the skull that tracks brain activity and encourages focus. The voice of a meditation expert can remind the user to focus on her breathing when the sensor detects changes in brain activity that indicate distraction. These same brain wave monitors are plummeting in price, largely as a result of the their growing popularity in video gaming. As a revenue stream, neural researchers interested in accessing a large data pool on brain behavior might pay the BrainBot to use their data, or they may sell subscriptions to meditation guides from the world’s top meditation masters, or both.

HeartBeat

HeartBeat bills itself as an enterprise solution for wellness practitioners. Citing the example of a yoga teacher who has a Twitter account, Facebook page, Yelp and an email list, as well as software for billing and booking appointments, the HeartBeat team says that too much time is spent on administrative tasks, and not enough on doing actual healing. HeartBeat combines these services into a unified set of tools that are familiar to social media users, making it easy to claw back time for what they’re passionate about.

Health in Reach

We have great choice when shopping for a flatscreen TV. Should we really have less information when choosing a surgeon? Health in Reach wants to inject cost transparency into the purchase of out-of-pocket health care, such as non-insured dental work and a host of others. Americans spend $100 billion each year on out-of-pocket medical treatment and Health in Reach wants to help save people money by adding a group-buying dyanic into this lucrative market.

In addition to the brilliant founders on display, RockHealth did a lot of things right during its demo day. RockHealth had a simple app that let attendees connect with presenters and ask questions, or visit their websites with the click of a button. Nothing too complicated, but it was effective.

There was a very refreshing vibe around the RockHealth Demo event. Very enthusiastic applause followed each presentation, and then again after the question and answer session. There was also lots of laughter throughout.

“I think when you bring the right minds together, what we’ve done is really break down the barriers between the medical community and the technology community, which have traditionally been very siloed,” RockHealth creative director Leslie Ziegler told VentureBeat. In the Silicon Valley tech world we spend a lot of time celebrating companies that thrive in the attention economy, where clicks, likes and user data matter more than impact. It’s a rarer to encounter startups focused on improving our lives physically.