Crohn’s Diagnosis Stories

…the Water Genie told Haroun about the Ocean of the Streams of Story, and even though he was full of a sense of hopelessness and failure the magic of the Ocean began to have an effect on Haroun. He looked into the water and saw that it was made up of a thousand thousand thousand and one different currents, each one a different color, weaving in and out of one another like a liquid tapestry of breathtaking complexity; and the Water Genie explained that these were the Streams of Story, that each colored strand represented and contained a single tale. Different parts of the Ocean contained different sorts of stories, and as all the stories that had ever been told and many that were still in the process of being invented could be found here, the Ocean of the Streams of Story was in fact the biggest library in the universe.

-Salmon Rushdie, Haroun and the Sea of Stories

Unchartered Currents

The diagnosis stories of people with chronic disease are an unappreciated resource in an unorganized library. This discussion is a continuation of a question I was first curious about a few years ago: Are other people’s diagnosis experiences with Crohn’s disease like mine? I combined my diagnosis story with another blogger’s story and made a piechart of our experiences [1]. To further accommodate my curiosity I posed a question in Crohnsforum and analyzed the responses [2]. For this update I’m adding more data; this time from a Facebook group for Crohn’s patients called Crohn’s Disease [3]. This is the updated question I posted:Was your Crohn’s misdiagnosed? If so, how many times? And what were the wrong diagnoses? A few years ago I studied this question and got a decent amount of responses. The results are published but I’d like to add to the data set. So if you feel like telling your story, I’ll add it to the data and republish with the updated results.The new responses more than doubled the previous data set. The new results are significantly more detailed: More responses means more misdiagnosis categories and I’ve grouped responses more thoughtfully, there’s analysis of how many misdiagnoses typically occur, how long it took to get a correct diagnosis, an analysis of the gender differences of the diagnosis experience, and some examples of iatrogenic events besides misdiagnosis.

This research shows, even though the data set is small, that there’s meaningful differences in the Crohn’s diagnosis experience of males and females. It wasn’t a result I was expecting. The dangers that our healthcare system present Crohn’s patients, both as a result of misdiagnosis and unnecessary treatment, aren’t equal opportunity.

All the data I’ve gathered is open to anyone who wants to take a look. My spreadsheet organization, scrap work, R code, and raw data files, are all available for download as a zip file: Crohn’s Diagnosis Stories raw data files.

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Posted in A Crohn's Disease Story, e-Patient Community Research.

An Underestimated Risk to the IBD Community: Drug Companies

“Prescription drugs are the third leading cause of death after heart disease and cancer.”

-Peter Gøtzsche, Nordic Cochrane Center, from his book Deadly Medicines and Organised Crime: How big pharma has corrupted healthcare

This post isn’t about the local octogenarian who black-markets half her monthly supply of Dilaudid to supplement a Social Security check. It’s about real drug dealing, and it builds on two previous posts: Data Mining the Distribution of Drugs Mentioned by IBD Patients on, and A Brief Analysis of the Mentions of Side Effects on The march of these three posts goes from identifying the drugs the IBD community is exposed to, to quantifying user reported side effects of the drugs, and now a look at the character of the companies who manufacture the most popular drugs taken by the IBD community. It’s all a public health angle, which there seems to be no light on. Continue reading

Posted in e-Patient Community Research, Rants, Uncategorized.

The Smallest Drug Dealer: A Brief Homage to Matt Taibbi’s book, The Divide

The ole Golden Rule joke: Those who have the gold make the rules. You’d hope a requisite for a civilized society would be to move past this sort of Dystopian brutality. But the Golden Rule joke is a Randian punchline used derisively on CNBC and FOX News but satirically on The Daily Show with Jon Stewart. It’s utility as a joke is that it’s the antithesis of treating others as you’d like to be treated. And so we all know The Divide already, it’s precisely why The Golden Rule joke works: It’s true. Continue reading

Posted in Book Reviews, Rants, Uncategorized.

UnHex: A Conversation on Medical Pessimism

Whenever you hear something said very confidently the first thing that should come to mind is: Wait a minute, is that true?

-Noam Chomsky, Distorted Morality

More than a decade ago an acquaintance, let’s call her HippieGirl, recommended I read a book called Spontaneous Healing by Andrew Weil. I took one look at the cover and judged it rubbish. My issue, which is clear in retrospect, was a confusion about the person recommending it. She was too enthusiastic about herbs, taking echinacea and ginseng for everything, Bob Marley, not showering, and she likely thought that her tattoo of a dream catcher really did something supernatural in her sleep. Weil’s book cover at the time had his face covered with a hippie style beard. I lumped these two people together in my head and didn’t come back to Spontaneous Healing until a physician at a Crohn’s and Colitis Foundation of America conference mentioned it [1]. Oh how I wish I would’ve listened to HippieGirl’s advice (at least about reading the book). Continue reading

Posted in Book Reviews, Rants, Uncategorized.

An FMT Shitstorm on the Status Quo

Shitstorm! That’s what the recent weather’s been like at the Fecal Microbiota Transplantation (FMT) Facebook Group ever since Tracy Mac, the group’s founder and host of The Power of Poop website, posted a link to a blog post written by Matt Wood of Science Life (a University of Chicago promotional blog) called Taking the Scientific Approach to Fecal Microbiota Transplantation. Matt Wood’s blog post summarizes an editorial called Curbing our Enthusiasm for Fecal Transplantation in Ulcerative Colitis written by the co-director of the Inflammatory Bowel Disease Center at University of Chicago, David T Rubin. Rubin’s editorial is written about a journal article which appeared in The American Journal of Gastroenterology called Temporal Bacterial Community Dynamics Vary Among Ulcerative Colitis Patients After Fecal Microbiota Transplantation. If you’re still following, the members of the FMT Facebook Group immediately expressed outrage for what Mr. Wood’s article said. The shitstorm was enough for Science Life to end the ability of users to post new comments after only 3 days even though it’s the blog’s most commented post ever. Mr Wood decided he’d force the last word upon us with links to the journal article and editorial. The comments here will remain open: My skin is thick, this is an important topic, and I hold no sword pointed out. Continue reading

Posted in Rants.

Addendum to “Analysis of Crohnology’s FMT Users…”

There are a lot of things I left out of Analysis of Crohnology’s FMT Users: An Open Source Peer-to Peer Observational StudyContinue reading

Posted in e-Patient Community Research.

Public Health Priorities, Please

In 1989 the Supreme Court set a potentially life saving precedent at the expense of our Fourth Amendment rights (that’s the one about search and seizure). The case, Skinner v. Railway Labor Executives Association, established the “special needs” doctrine which creates an exemption to the Fourth Amendment based on public safety. Continue reading

Posted in Rants.

Analysis of Crohnology’s Fecal Microbiota Transplantation Users: An Open Source Peer-to-Peer Observational Treatment Study

If you don’t appreciate what the next sentence says it doesn’t really matter. Patient social networks will do more for observational studies than what the Cochrane Collaboration has done for randomized control trials. What matters is that you tell your story. Your experience with treatments and medications is evidence. Patient’s stories should never be dismissed as anecdotes (it’s not only dehumanizing it’s a misuse of the word anecdote). We, the patients, need not have to purchase a credential and malpractice insurance to read case stories written by each other. Let’s, for a moment, never mind Abbott and AbbVie, Bad Pharma, the institutionalized biases produced by monetary incentives, case law, cancer, class actions, the FDA, Pharmageddon, insurance, The Truth About Drug Companies, marketing budgets, Obamacare, side effects, Overtreated, iatrogenesis, Vioxx, and Viagra. Let’s investigate a democratized disruption in action, a patient social network. Let’s use it to add outcome results to the literature of a procedure that shows promise for many chronic conditions and costs less than my monthly cell phone bill. But before you think this article is all roses… Continue reading

Posted in e-Patient Community Research.

e-Patient Boundaries and the Publishing Profiteers

I’m sure someday we won’t need the word e-Patient. The tenants behind the “e” will be expected and eventually become the default patient/physician relationship. A problem solving partnership. That’s a change in culture. It will happen but we don’t live in that world yet. Ours is an antiquated paternalist top down legacy with its fair share of condescension, contempt, and greed. The great democratization of the conversation (as they say) can only go so far without legal challenges. The most institutionalized of which is our drug laws. But that’s not what this post is about. This post is about access to published health care related research. It’s a boundary where the e-Patient could get stopped. There are workarounds and subversive tactics to deploy. It’s baby steps or maybe even learning to crawl.

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Posted in e-Patient Community Research, Rants.

A Brief Analysis on the Mentions of Side Effects on

This is the second part in a series of research articles focused on drugs discussed by IBD patients on The concept of Drug Side Effect Ratio is defined.

The previous article took a look at what drugs IBD patients discuss on crohnsforum. This article examines the instances of the phrase “side effects” near the drug names. I collected Google results by using a site specific search then determined the percentage of mentions of “side effect” near the drug name.
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Posted in e-Patient Community Research.

Data Mining the Distribution of Drugs Mentioned by IBD Patients on

This article is a bird’s-eye view advocacy piece for anyone interested in the Inflammatory Bowel Disease community.

There’s a difference between the drugs commonly prescribed for IBD (Crohn’s and Colitis) and the set of drugs commonly taken by IBD patients. A simple example is to consider an IBD patient suffering from abdominal pain and can’t sleep. A typical course of drugs would not only be pain medication but also sleep medication. A few resources on the Internet do an adequate job of discussing the drugs taken for IBD symptoms and remission maintenance but there aren’t any resources which examine the distribution of drugs taken by IBD patients. This article attempts to quantitatively examine the distribution of drugs taken by IBD patients. Continue reading

Posted in e-Patient Community Research.

Crohn’s Disease Case Story in a Nutshell

In a nutshell: I was diagnosed with Crohn’s disease at age 25 in the summer of 2001 while living in Chicago, IL. My symptoms had started years earlier and my attempts to get help were stymied by a handful of misdiagnoses by general practitioners and emergency room physicians. My pain was in the lower right quadrant of my abdomen and among other issues I suffered from backaches, chills, fever, diarrhea, nausea, dehydration, fatigue, anemia,  bloating and there was at times golf ball sized lump where the pain was. Continue reading

Posted in A Crohn's Disease Story, DIY Electronic Health Record, e-Patient Community Research.