[wyck]

I'm am concerned by this.

Specifically with this linked site, Crohns and Colitis are not the same diseases and have different treatments, yet the data is lumped together, this is irresponsible.

Secondly the masses are now always right, this can easily fall into a movement of bad advice and skewed product ratings without oversight by the maintainers, actual doctors, and research with peer review.

For the record I've done a lot of research on Colitis (peer journals, specialists), there is nothing in the link that provides anything that a doctor isn't going to tell you within the first 5 minutes medication wise. I have had a friend die from a Colitis flare up, and 2 others with severe cases, one of whom is in the hospital right now, to suggest that taking Vitamin-B and not drinking beer will help is to be honest, ridiculous.

[seanahrens]

It's an iterative and building process for us to get where we want to go with Crohnology. The start is less scientific, but as we build better software, with larger N, and bring on the involvement (and attract the attention of) more researchers and doctors, things will build their rigor.

If you believe in the vision, of gathering patients together to collect and learn from more real-world data points, in concert with oversight by researchers, then the current implementation is, well, just the current implementation to get us to that end goal, of a more engaged, globally-distributed means of learning from patients as they live and treat their disease.

Medical science is fundamentally the study of how inputs to a body relate to outputs of the body (in the scope of treating disease). If we can collect a continuity of these data points in the real-world, among a global populous, you have the potential to understand the disease in ways never before possible.

[carbocation]

In medicine we lump UC and Crohn's because they are both inflammatory bowel diseases. I think it's entirely reasonable if you do the same (at least / especially initially).

[ajuc]

I've been diagnosed with UC 10 years ago, only recently doctors changed their diagnosis to Crohn's disease (btw it's called Leśniewski-Crohn disease here). Apparently it's hard to distinguish, and I think it's good to keep them together.

[wyck]

Thanks you, I did not mean to be negative and think this site is a great resource to build a community, I just had some concerns.

[baugarten]

While I agree that the data should not be lumped together, the treatment options for Colitis and Crohns are almost entirely the same, at least in terms of biologics, steroids, and NSAIDs. My doctor isn't 100% sure whether I have Crohns or Colitis (biopsies say colitis, but inflammation characteristic of crohns).

Secondly, I must say that I find diet is extremely important when you have IBD. Now, I'm not about to go off of all my medication and grab some Vitamin B tablets, but I, like most patients, have trigger foods that will almost certainly cause me pain.

Additionally, past studies have shown enteral feeding to be extremely effective (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1378894/), suggesting that diet is a major factor. Again, fecal transplants are widely successful (http://journals.lww.com/jcge/Abstract/2003/07000/Treatment_o...) and the FDA is reviewing fecal transplants as a viable treatment option. Again, if fecal transplants do work, then a necessary cause of crohns/colitis could be an imbalance of gut bacteria, caused by poor diet/antibiotics/preservatives

[wyck]

If you ever have a flare up I would suggest getting a colonoscopy, they can tell somewhat accurately which one you have. There is an additional procedure (don't know the name) where they fill you with white liquid and perform an abdominal CT scan during a flare up. Since the ulcers are in different locations for each disease they can visually see where the problem is.

Also treatments are not always the same, for example in Europe they sometimes treat Colitis with nicotine (if the patient is a smoker or has recently quit), but doing so with a Crohn's patient would have a negative effect.

I agree that the steroid use is typically the same (and asacol), but Colitis seems less affected by diet than Crohns, if you have a severe case the only help is medication and diet has little to no effect outside abrasive materials.

I'm not being negative about the site, I do think it is great that people can come together as a community, I just had some concerns.

[telecuda]

Don't be.

I've known Sean for a few years and operate a (smaller) disease-based Q&A community as well with 2,500 members for Ankylosing Spondylitis (AS) - http://answers.ankylosing.org

I created it when my girlfriend was diagnosed, dismayed that Google yielded mostly information from WebMD and pseudo-FAQ sites from big pharma.

Where networks like Crohnology shine is in connecting others who share the same pains, frustrations with doctors, experiences with medications, comforts, and very personal conversations about the impact on sex and relationships with their disease.

And guess what, when someone puts out misinformation, that community hops on the offender like white on rice, even emailing me directly (can you ban them!?).

I've seen few social networks truly as tight-knit as disease communities and that's where Sean focuses his energy (whereas mine is a small side project). They're the only place to interact with a cohort that really "gets me" and they take pride in helping others to an amazing degree.

Finally, in reference to a doctor and the "first 5 minutes" comment - the reality is they only give you 5 minutes, and when you complain about a new pain, symptom, you'll often get "Yup, that's Crohn's/AS/etc." Then they'll write you a script for a drug where the ONLY real place to get good information on the side-effects/positive-effects are through networks like ours.

edit: I still always manage to spell Crohn's wrong