Family Medicine Net Guide Cover Story

Empowered! Taking Control of Your Health With the Web

According to a turn-of-the-century report from the University of Missouri, “the biggest impact of the Internet on the practice of medicine will be the rise of patient empowerment.” Indeed, the historical model of medicine—with the physician dispensing instructions to an uninformed and unquestioning patient—is gone with the millennium. In its place comes a new system, in which patient empowerment—defined for our purposes as a process in which the consumer learns about the conditions affecting him or her, and the ways those conditions are treated, in an effort to become a more intelligent and active partner in his or her own care—is more important. With the emergence of the Internet and other sources of instant information, the drive toward increased empowerment has gained momentum in recent years; the University of Missouri article cited above found that more than three quarters of online Americans use the Internet to research health information. Roughly one third of those using Medline (www.medlineplus.gov); the most significant professional literature search engine online) are patients.

Laura Landro, award-winning Wall Street Journal reporter, and CNN news anchor Kat Carney dealt with cancer and polycystic ovary syndrome, respectively, by using the Internet and other sources to remain informed and aware. Bill Robertson, a computer support technician with inflammatory bowel disease (IBD), has been maintaining an online support-and-information-exchange service entitled “IBD Sucks” for the last decade. Below, we’ll take a closer look at the stories of these three individuals, each diagnosed with a serious or chronic condition, whose lives and approaches to their own care were changed when they took the initiative to educate themselves.

Information, Solace, and Understanding: The Story of IBD Sucks
Bill Robertson

About the Author Bill Robertson is a computer support technician at a large private university in Boston. He’s been working with computers of one kind or another for nearly 30 years, and suffered from Crohn’s disease for a few years longer than that. He’s the owner and moderator of the popular interactive Web-based support forum, IBD Sucks. It’s been online since October 1994. Mostly though, he’d rather be taking nature/wildlife photos, and practicing wu-style tai chi chuan.

Pre-History
I was first diagnosed with Crohn's disease (CD) in 1969, rather well before the Internet was anything more than a twinkle in the eyes of some engineers at the Defense Department and various universities. It wasn't until 1994 that I, myself, was first connected to the Internet, and the brand new World Wide Web. During that time, I'd had 10 years of more or less continuous CD; a partial resection of the terminal ileum and cecum in 1978 was followed by nearly 20 years of remission. I occasionally thought about joining a support group, but since I was in remission, I never felt compelled to do so. I knew that I was not cured, of course. The doctors who diagnosed me, and the surgeon who did the resection, assured me of that. But I was able to convince myself that as long as I had no symptoms, there was no need to go looking for trouble.

Of course, I wasn't entirely without symptoms. Since the resection, I had dealt with chronically loose, watery bowel movements, occasional sharp pains that I'd been told were probably adhesions from the surgery, and dull pains that were mildly troublesome, but infrequent enough that I could successfully suppress any worry about them (denial is a wonderful thing, in moderation at least).

In 1994, I was working at a local university as a computer tech support specialist; I got an Internet connection and began exploring what was at the time an entirely text-based Internet. One very popular phenomenon at the time was something called USENET, a very large, loosely organized, and completely wide-open collection of bulletin boards. One of them was called alt.support.crohns-colitis. It was a forum that allowed people with Crohn's disease and ulcerative colitis (UC) to talk to each other about their conditions. I participated in various discussions, and found that there were way more people than I thought who also had CD and UC.

At about the same time, I discovered the World Wide Web. The only Web browser at the time was called Mosaic; I also found an application that ran on Macintosh computers called MacHTTP, which would let me use my computer as a Web host. I thought this was pretty cool, and set up a very simple page or two, just to see how it worked (yes, I'm a computer geek), but I had no real reason to run a website. And then one day, in August of 1994, someone in the alt.support.crohns-colitis newsgroup suggested that it would be nice if there were a website for Crohn's and colitis sufferers. I read this, and found my reason.

At this time, there were something like 2,000 Web servers in the entire world, and mine was one of them! At first, I just collected a bunch of information that already existed in various places around the Internet; as more IBD-related web sites came online, I collected links to them as well. The site grew fairly quickly, and the basic format of those early days still exists on my server today, at http://qurlyjoe.bu.edu. My intent was to provide a sort of one-stop shopping place for information about inflammatory bowel disease. I also had some pictures that had been taken during my first colonoscopy, so of course I had a page showing those (http://qurlyjoe.bu.edu/pics/mycolon.html).

The Site Evolves
In November of 1994, I came across another Macintosh application that allowed me to create a very primitive interactive forum, where people could post messages, and reply to earlier messages. I started it up in December of 1994. For reasons that were obvious to everyone who joined in, I called the forum “IBD Sucks” (IBDS). It was immediately popular (I did get one or two complaints about the name, but I stuck with it). Within a month, there were a few hundred participants; most were from North America, but a few folks chimed in from Europe, one from Southeast Asia, and one from South Africa. It very quickly started to overwhelm the small computer I was running it on.

In January of 1995, I came across yet another application, called Web Crossing, which provided a much more efficient way to run an interactive forum. In February of 1995, the current incarnation of IBDS was born. From the beginning, I modeled it loosely on Alcoholics Anonymous and other 12-step support organizations. The main idea behind it was that the people who best understand what it's like to suffer and live with IBD were the ones who had it. Along with that was the important idea that these diseases affect not only the ones who have it, but their families, spouses, and friends as well. Parents of children with IBD have particularly painful issues to deal with. I wanted to include all of these disparate groups, and let folks “share their experience, strength, and hope with each other.”

I found early on that many people had less than charitable things to say about the medical profession, and the treatment they'd had, or as often as not, suffered, at the hands of their doctors. It appeared that general practitioners (GP)—and even some gastrointestinal (GI) specialists—possessed a dismaying lack of information about IBD. Another theme was the social isolation experienced by many IBD sufferers; bowel movements, or lack thereof, are not typically considered a topic for “polite” conversation, and folks who were kept literally house-bound by their disease often wondered if they were doomed to lives of complete isolation.

Medical Impact
About two years after starting IBDS, I began experiencing partial bowel obstructions. All the time I was in remission, the CD was working quietly away, building up scar tissue at the site of the resection. Gradually, the scar tissue was enough to narrow the inner diameter of my intestine to about pencil size. I had never been told about this possibility by a doctor, but had read about it frequently on IBDS by then, so I had a pretty good idea of what was going on before I saw a doctor about it. The first time I had to be hospitalized because of a blockage, I mentioned it as a possible reason for the pain I was experiencing, but no one on the emergency room (ER) staff seemed to want to give me much credit for knowing what was going on. As it turned out, after several x-rays, and a CAT scan, the ER docs concluded that perhaps I was right after all.

I shouldn't really have been surprised, I guess. I told the GI specialist assigned to me about IBDS, but he was immediately dismissive about it, and said that I shouldn't believe everything I read on the Web. I've since “fired” him, and found a GI who was actually interested in the site and curious enough to have a look in on us. The fact that I could “fire” the first doc was something I'd learned from the other participants of IBDS. The perspective that they (the docs) work for us, and not the other way around, is certainly different from the way I used to think about it.

I've read about the experiences of literally thousands of people, who've had to deal with bad doctors, uncooperative insurance companies, uncaring employers, and abusive family and friends. I've also shared the joy of good medical care, good insurance coverage, employers willing to go the extra mile for valued employees, and caring and supportive loved ones.

I’m now much more likely to be critical, in both positive and negative ways, of the doctors I deal with. I know that I have a right to ask as many questions as I want, and more than that, I have an obligation to myself to ask questions. As an example, two years ago, I had to find a new GP since my old one was retiring. The new one ordered a round of blood tests, which was fine with me as it had been a while since I’d had them. I insisted however, that a test for vitamin B12 level be included when she hadn't included it at first.

She said she “forgot.” OK. But when the results came back from the lab, all she would tell me at first was that all the numbers were “normal.” I knew, from reading about it on IBDS, that the standard method of B12 testing can sometimes yield misleading results. I asked if the test had included the alternative test procedure. She admitted that she didn't know; when it turned out that it hadn't been done, she ordered another test. This time, it was clear that my B12 level was in fact low, and a B12 supplement was probably a good idea. Without having had the words of other “Suxters” (as we sometimes call ourselves) in my head, I would likely have let the “normal” reading go by.

The Site Today
The population of IBDS seems to be fairly constant at around 5,000 members. There have been 50 or so members who've been around since the first incarnation of IBDS, or from the first year at least. According to the log files, IBDS averages about 20,000 page views per day, and about 2,500 new messages are posted per day. From what I can tell, there are probably 100-200 members who are active on a daily basis, and a few hundred more that look in weekly or so.

There have occasionally been a very few members who admit to being healthcare professionals; even they, however, participate as IBD sufferers and not in any official or authoritative way. The information we exchange is primarily experiential. There are discussion areas for presenting abstracts of recently published research. Whenever anyone comes in looking for help with a particular problem, I try to encourage respondents to speak in terms of “this is what happened to me, and this is what I did about it, and this is what happened,” rather than saying “this is what you should do.”

Where I do draw the line is with any sort of advertising for “cures” of any kind. Another policy we’ve had from day 1 prohibits advertising of any kind. I just felt it was simpler to not allow any advertisements, rather than get into trying to decide whether anything was OK or not OK. It became clear very early that this policy was welcomed by the members of IBDS. Whenever anyone came on and tried to sell anything, they were attacked quite viciously, frankly, and vociferously.

Sales and direct medical advice aside, any aspect of our lives that is affected by IBD is allowable for discussion. At left, you can see a list of top-level discussion folders; within each of those are more detailed listings. For instance, in the “Quality of Life” folder you will find, among other conversations, these discussions: “Do Significant Others Help,” “Exercise & Sports,” “Faith and IBD,” “For Men Only,” “For Women Only,” “Helpful Hints for Coping With Pain and Flares,” “How Do I Explain IBD to Clueless People,” “IBD and Aging,” “Sex and Intimate Relations,” and more.

The most active discussion area is the folder on the main page called “Personal Discussions.” This is where members can create their own discussion and talk to each other about their personal lives. And do they ever talk! People talk about anything and everything; just this morning I've read about upcoming wedding plans, vacation plans, the legal problems of someone’s delinquent son, the weather in various parts of the world, how to make your own dog biscuits, school exams, and more.

Concluding Thoughts
Today, there are sites around the Web that are better organized, fancier, and more up-to-date than mine, but the interactive forum remains a significant contribution to the IBD community; in fact, I believe it's probably the single most significant contribution I've made to the world in general. I have received hundreds of e-mails thanking me for starting it and running it. A lot of these were from people who had never even posted messages themselves, but had found courage, and comfort, and understanding of their own situations from reading what others had said. I have received messages from people who were on the verge of suicide, despairing of ever finding anyone who understood what they were going through until they found IBDS. I confess I take comfort in knowing that this happens sometimes.

There have been several get-togethers—we call them “Fests”—amongst various groups of members. The first time I met two other members was at a restaurant in downtown Boston. There was a group of women from across the country who rented some cottages at a lakeside resort in Wisconsin; people still talk about the Ethel Merman impersonation that one of them did. I've met at least 20 other people in person who I first got to know on IBDS. It's incredible to be able to meet up with someone for the first time, and yet be able to talk for hours as though we'd been lifelong friends.

I do also have to say that, frankly, running IBDS is sometimes a huge pain. These are real people, and they interact like real people do, which of course means that they can fight like banshees sometimes. We've not been immune to flame wars, and cliques form and break up and reform, and people leave in anger, and disgust, and fear sometimes. I've been tempted to pull the plug on occasion. Some folks assume that since I run the place that I have some kind of wisdom to be able to solve all disputes and right all wrongs. I have to constantly remind people that I really am just like them.

All the same, IBDS has become something much greater than any one of its parts, and something bigger than me, bigger than anything I ever imagined it would become. We are a tiny microcosm, a self-supporting (in the emotional sense, at least) little world where we all get by with a little help from our friends. That I have had a part (however unwitting) in bringing all these people together, and helping them all help each other in the most incredible ways, never fails to amaze me when I think about it.

That’s my story, and I’m sticking to it.