Best Crohn's Websites and Online Resources

As I wrote in a previous article, in my home state of North Dakota opportunities for support and learning about Crohn's disease (and ulcerative colitis) live and in-person are few and far between. The best place to learn about Crohn's, meet other Crohn's patients and get the latest up-to-date information about Crohn's medications and treatments is the Internet. But which Crohn's websites are the best?

Crohn's Websites No.1: www.ccfa.org
The most comprehensive and user-friendly site that I've found for Crohn's patients, as well as their families and friends, is www.ccfa.org - the website of the Crohn's and Colitis Foundation of America. You can tell by the "org" at the end of the site name that it is a non-profit; the sole agenda of the Crohn's and Colitis Foundation of America is to help people who are dealing with the illnesses and provide both medical information and support for Crohn's patients. Yes, you'll see advertisements on the website, and some of them are for Crohn's medications or physician members of CCFA. That is actually a good thing, as it allows visitors to the website to learn even more about Crohn's. The website provides the latest information about teleconferences, meetings and fundraisers for Crohn's disease sufferers and for CCFA. One such teleconference is featured on the home page: "Free Teleconference on March 6: 'Inflammatory Bowel Disease -- Why Should I Take My Medications?'." For someone like me, who will never find a conference on Crohn's in my hometown, this is a priceless resource. The site also provides up-to-date information about new Crohn's and colitis medications. Another front-pager is about Tysabri, a medication that is already approved, with many restrictions, for multiple sclerosis, and has just been approved, with very tight restrictions, for the treatment of Crohn's disease. One of the potential side effects of Tysabri is a potentially fatal brain infection - and the CCFA provides all the facts about that. Other areas of the website are devoted to living with an IBD (inflammatory bowel disease; that is, Crohn's or ulcerative colitis): Disease Information, How You Can Help (the CCFA and yourself), Research, Chapters and Events, Kids and Teens (an area often underdeveloped on disease websites), Advocacy (a major project of the CCFA), Science and Professionals and even a shop, where you can buy informative books for all age levels, as well as gear like beanies, ball caps, sweatshirts and more, imprinted with the CCFA logos and personalized if you request it - and all proceeds from the shop go to support the efforts of the CCFA. For understandable and comprehensive information about Crohn's disease, and support so that you don't feel so isolated, I think there is no better Crohn's website than this one.

Crohn's Websites No. 2: www.crohnsonline.com/
Another great website dedicated to just Crohn's disease is www.crohnsonline.com/. This site's focus is maintaining a near-normal lifestyle with Crohn's through appropriate medications and lifestyle changes. Although this website is maintained by Abbott Laboratories, a pharmaceutical company, it does a remarkable job of staying unbiased and keeping its medications off the front page. It provides new and current information about Crohn's disease, and has a brief and easy to understand section about the facts of Crohn's: what it is; what the potential complications are (many of them are from the medications and treatments); the causes of and risk factors of Crohn's disease; some treatment options for Crohn's, which include Aminosalicylates, a type of anti-inflammatory drugs used with mild to moderate cases of Crohn's, Corticosteroids, used for moderate to severe Crohn's, Immune modifiers, used for moderate to severe Crohn's with patients who are dependent on corticosteroids, Antibiotics, used to treat infectious complications of Crohn's as well as other related problems; and Biologic therapy, used when the usual treatments aren't working. It does appear that Abbott's specialty is the biologic therapies, but they don't push it. The Crohn's Online website also provides a section on managing Crohn's disease, by learning about the illness, diet advice, planning advice, reducing stress, and other common sense approaches to changing some life factors that affect the progress of Crohn's. One of the strongest features of the Crohn's Online website is their page of travel tips; I recommend it to anyone considering traveling with the illness. They close by offering some resources, headed by the Crohn's and Colitis Foundation of America (CCFA) as well as some of the other sites I'll discuss below.

Crohn's Websites No. 3: http://www.medicinenet.com
For an in-depth plunge into all things Crohn's, check out http://www.medicinenet.com. There is an article on Crohn's there ("Information on Crohn's Disease Symptoms, Causes, Diagnosis, and Treatment by MedicineNet.com") that answers every question a newly diagnosed patient, or her friends and family, may have. What is Crohn's disease? What causes it? How does Crohn's affect the intestines? How is it different from ulcerative colitis? and on through the symptoms, complications, diagnosis, treatments, and in-depth information about the different classes of medications for Crohn's as well as the individual medications within those classes, and their potential side effects on the Crohn's patient. It also discusses surgery and surgical options for Crohn's patients. It has so much information as to be almost overwhelming, and those with no education beyond high school, or little knowledge of general medicines, may find it too complex. This is a great site to recommend to your Crohn's physician, especially if his (or her) specialty is not Crohn's. It may be something that a Crohn's patient wants to approach a little at a time. There is a small section titled "Crohn's Disease at a Glance" which is a great place to start, although it is almost at the end of the article.

Crohn's Websites No. 4: http://mayoclinic.com/health/crohns-disease/DS00104
An equally informative site about Crohn's disease, and one slightly easier to read, is provided by the Mayo Clinic. It is http://mayoclinic.com/health/crohns-disease/DS00104 and is written and maintained by Mayo Clinic staff, arguably some of the best physicians in the world. It provides a brief introduction to Crohn's disease, followed by sections on Signs and Symptoms, Causes of Crohn's, Risk Factors, When to Seek Medical Advice, Screening for and Diagnosis of Crohn's, possible Complications of Crohn's, Treatment of Crohn's, Self-care (one of the most important sections for any Crohn's patient), Coping Skills (which includes finding support systems), and, something not found as often as some Crohn's patients would like, Complementary and alternative medicine. It is a thorough and comprehensive article, and provides some links to other resources.

Crohn's Websites No. 5: http://crohndiseases.net/
If you or someone you know has just been diagnosed with Crohn's disease, and you want to know what resources are out there, you should check out http://crohndiseases.net/ , a website that lists other websites and provides links for nearly all aspects of Crohn's disease. While it does seem to have a connection to a company that produces an aloe product to add to the diet of Crohn's patients, and advertises a "protocol to cure Crohn's disease" (which patients should be aware has no basis in medicine and has never been proven to work), it also provides valid links to helpful sites, such as www.CCFA.org and others. It is just a list of links, with very short descriptions of the links, and in and of itself has no information about Crohn's disease, how to treat it, or how to live with it.

Crohn's Websites No. 5: http://dailystrength.org
There are several sites whose primary function is to provide a community and support for Crohn's patients and their families. One of my favorites is http://dailystrength.org, which has a specific Crohn's section. It is a free community designed to help Crohn's patients. It has discussion topics and threads that you can read or add to; it allows members to keep an anonymous journal which can be helpful in getting both negative and positive emotions about living with Crohn's out, as well as providing others with inspiration and kindred feelings. There is current information about treatments for Crohn's disease, and ways to cope with the illness, and there are medical professionals who can provide recommendations or answer questions. This site makes newcomers, whether recently diagnosed with Crohn's or looking for a place to find support after years of dealing with the illness, feel welcome, safe, and helped.

Crohn's Websites No. 6: http://www.crohnsandme.com/
A similar website, but one which seems to be aimed at younger Crohn's patients, is Crohn's and Me. This site is available in multiple languages for Crohn's patients worldwide, and has sections on how to understand Crohn's disease, how to live with it, how to treat it, and more. It offers a Crohn's scholarship program, with $300,000 available for Crohn's patients. It tells the story of Ally Bain, a young woman fighting for restroom access for Crohn's patient in stores that offer no public restroom, and currently has an interview with Mike McCready, the guitarist for the band Pearl Jam who happens to be a Crohn's Disease patient. It seems like a super supportive site, and while I would recommend it more to the younger (as in under 30) Crohn's patients, this site does provide something for everyone.

Crohn's Websites No. 7: www.mdjunction.com/crohn-disease
One final support site for Crohn's disease sufferers can be found at MDJunction; it is www.mdjunction.com/crohn-disease . The site describes itself as "A community of patients, family members and friends dedicated to dealing with Crohn's disease, together." It provides on-going discussions, by its members, of Crohn's-related topics including symptoms, treatments, side effects, and more. The members also share helpful websites for Crohn's that they have found, and their experiences with finding physicians and treatment centers, as well as raising awareness of Crohn's disease, an illness that affects over 500,000 people in the United States. Members can write about how awful they've been feeling and get sympathy and support from others who understand exactly what they're going through; alternately, they can share their happiness in finding a treatment that works for them, or for having a trip or event uninterrupted by a Crohn's flare.

There are probably hundreds of Crohn's websites available to help Crohn's patients and their families and friends. Not all of them help everyone, and some of them provide little help to anyone (I hope I've left those out!). It is my hope that this article will help Crohn's patients and those who care about them find some websites that will be helpful to them, and possibly some they might want to skip. Good luck to all of you.