Coping With Crohn’s Disease: 100 Helpful Resources and Communities

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Crohn’s disease, an autoimmune disease that affects the bowel causing inflammation, pain, and gastrointestinal symptoms, affects hundreds of thousands of people in North America alone. Whether you are newly diagnosed with Crohn’s disease or have been living with it for years, finding new information, support, and a sense of community is always important. With no known cure and varying approaches to treatment, gathering and sharing knowledge is an excellent way to help yourself and others deal with this disease. Below, you will find articles, support groups, education, foundations and associations, information on diet, clinical trials, and blogs from other people living with a diagnosis of Crohn’s.

The Basics

Learn the basics from descriptions of Crohn’s to symptoms to medical treatment options with these resources.

  1. Mayo Clinic Crohn’s disease. Learn the basics about Crohn’s as well as symptoms, treatment options, and alternative therapies.
  2. MedicineNet.com Crohn’s Disease. Another good resource for learning the basics, this site also offers professional advice on specific medications and surgery.
  3. Crohn’s Disease. From the National Digestive Diseases Clearinghouse, get information on Crohn’s as well as links to clinical trials and additional resources.
  4. Crohn’s Online. Supported by Abbott Laboratories, this site offers information on Crohn’s and a decidedly medically-based approach to treatment.
  5. Crohn’s disease – Everybody. This health site from New Zealand offers a good overview on what Crohn’s disease is all about.

Associations and Foundations

These associations and foundations from around the world all offer help, information, and medical advice for those living with Crohn’s. No matter where you live, you can share information and find support.

  1. Crohn’s and Colitis Foundation of America. Not only can you get news and information about Crohn’s here, you can also find clinical trials, physicians, and more.
  2. Crohn’s & Colitis Foundation of Canada. Select the French or English version of this website to get information, become a volunteer, or find events in your area.
  3. American Gastroenterological Association. Get information on the treatment of Crohn’s with articles, podcasts, videos, and more.
  4. United Ostomy Associations of America, Inc.. This national network serves to unite support groups for patients and caregivers of those dealing with "bowel and urinary diversions."
  5. Australian Crohn’s & Colitis Association. Find information about research, clinical trials, get newsletters, and more at this resource.
  6. Crohn’s & Colitis Australia. Read about Crohn’s, get support, and learn about current research with this Australian organization.
  7. European Federation of Crohn’s & Ulcerative Colitis Associations. Get information about research studies, find youth groups, and connect face-to-face at this European connection.
  8. International Foundation for Functional Gastrointestinal Disorders. This non-profit organization works for education and research in the field of gastrointestinal disorders.
  9. International Ostomy Association. Committed to improving quality of life for ostomates, this foundation offers forums, resources, and more.
  10. National Association for Colitis and Crohn’s Disease. This organization in the UK works to provide support and education for those dealing with IBD.

Resource Centers

Offering everything from articles and newsletters to forums and message boards to book reviews and news stories, these sites serve as resource centers to provide plenty of information and support.

  1. Living with Crohn’s Disease. Find out about Crohn’s, pediatric Crohn’s, subscribe to the newsletter, and learn about the latest research here.
  2. Crohn’s Disease Resource Center. From HealingWell.com, this site offers articles, books, forums, and news stories about Crohn’s.
  3. Crohn’s Disease Treatment, Symptoms & Information. This site provides information about Crohn’s, treatment options, forums to connect with others, a newsletter, and much more.
  4. ButYouDon’tLookSick.com. Anyone suffering from chronic illness, pain, or invisible disabilities can benefit from the articles, book and product reviews, and message board at this site.
  5. Shaz’s Ostomy Pages. Learn about the various forms of ostomies, read other people’s stories, and connect with other "ostomates" at this site.
  6. Crohn’s/Colitis Home Page. Having been around for 13 years, this site aims to be a "one-stop" site for information and support.
  7. Crohn’s Disease Info Center. Find information on Crohn’s as well as information on a current clinical trial that includes research, trial information, a physician information kit, and more. You can also join on the message board, get newsletters, and find links to other resources.
  8. David’s Crohn’s & Colitis Webpage. check out all the useful information available here, then participate in message boards and support groups, or just check out the "Best and Worst times to have to go" section.
  9. Teens With Crohn’s Disease Website. Teens can read about the experience of other teens living with Crohn’s, participate in message boards and chat rooms, get recipes, and more.
  10. Annee’s Crohn’s Disease Page. Annee shares her experience of living with Crohn’s and also offers tons of information and opportunities for support here.

Articles

From video interviews with average people living with Crohn’s to travel to college to humor, these articles offer information and more to those touched by Crohn’s.

  1. New York Times Health Guide Crohn’s Disease. Learn about Crohn’s disease, find out what types of tests are available, get treatment options, and more in this helpful article.
  2. Crohn’s Disease. This very detailed article describes the disease, genetic connections, diet, stress, types of Crohn’s diseases, and much more.
  3. sophia.and.org. This website presents its information in a rather different format. The woman here had an ileostomy ten years ago and has several editorial pieces that describe her life experiences. Click through the website to discover them all.
  4. About.com Crohn’s Disease. Get plenty of great information from the articles here that cover everything from surgery to book reviews to traveling with Crohn’s.
  5. New York Times Well. This article from a blog at the New York Times offers video of seven people living with Crohn’s.
  6. Surviving College with IBD. This multi-part About.com article offers sound advice for teens living with Crohn’s going off to college.
  7. Confessions of a Chicken Man. Written by a man living with Crohn’s, this article describes food choices made while traveling and the empowerment in his choices.
  8. The Lighter Side. If you find you need a little humor, then check out this site that shows advertising that holds special humor for those living with Crohn’s.

Communities

Connect with other people living with Crohn’s by participating in these great online communities.

  1. PatientsLikeMe. This community brings together people living with illness. If you don’t see a community of people dealing with your exact disorder, send a request and they will add it.
  2. CarePages. Create a care page and help friends and family stay connected to your health journey as well as meet new friends undergoing the same health concerns.
  3. Cafe Chronique. Become a member here and have access to forums, chats, groups and more. Create your own page to help connect with others living with chronic illness.
  4. Crohnsforum.com. Complete a free registration to participate in the forums here that discuss many aspects of living with Crohn’s.
  5. IBD Sucks!. Specifically for those with Crohn’s and other IBDs, register for free to participate in the forum here.
  6. iVillage Crohn’s Disease & Colitis. Join in the discussions going on at this message board for women dealing with Crohn’s or colitis.
  7. Yahoo! Groups: Crohn’s and Colitis. These Yahoo! groups offer support and connection for everyone. Browse through the listing and join as many as you like.
  8. Irritable Bowel Syndrome (IBD) Forum. This forum welcomes anyone living with IBS, Crohn’s, or colitis to participate in the discussions and find support.
  9. Crohns-Sanity.org. Not only can you take part in online support through the forum, but there is also a section for memorials, links to other resources, and some information on theories.
  10. Crohn’s Disease Support Group. A part of MD Junction, this group offers forums, diaries, articles and more to help you find support and empowerment.
  11. IBS Self Help and Support Group Forums. These forums provide several categories such as teens, women, meetups, abdominal pain, gas, and more.
  12. Crohn’s Zone. This community offers forums, chats, articles, and more for those looking for support and connections.
  13. WeAreCrohn’s.org. A patient-led support network, this group offers connections through online discussions, articles, communities, and photo sharing.

Finding Support

Find online support in these groups and blogs that are dedicated to educating and empowering those living with Crohn’s.

  1. Reach Out For Youth with Ileitis& Colitis. Run by parents of children with Crohn’s, this group offers support, research, and much more to help your family deal with this disorder.
  2. In Sickness and In Health: A Place for Couples Dealing with Illness. Written by an ex-psychotherapist and woman dealing with chronic illness, the posts on this blog are meant to help couples who are dealing with a chronic illness in their lives.
  3. Invisible Illness. This site has articles, offers support and more for those dealing with an "invisible" illness.
  4. Every Patient’s Advocate. Trisha Torrey works as a patient advocate after being mistakenly diagnosed with a terminal illness. Read her blog for tips, news, and more to empower every patient to be their own advocate.
  5. GlutenFreeTravelSite.com. Visit this site to take the worry out of planning a trip and eating gluten-free.
  6. Crohn’s and Colitis Support Group Web Site. Get information about Crohn’s at this site from New Zealand and find links to support groups too.
  7. The J-Pouch Group. This website is dedicated to educating and providing support to those who plan to have the surgery or are living with a J-pouch.
  8. IBS Tales: Personal Stories of IBS. Read about the experiences of others dealing with IBS at this site where stories are categorized by happy, sad, and embarrassing. You can also find articles, details of specific therapies, and more.

Clinical Trials

Many people seek clinical trials in search of new, innovative treatments and to help further research. If you are interested in clinical trials for your Crohn’s disease, then check out these resources.

  1. ClinicalTrials.gov. Use this resource to find both federally funded and privately funded clinical trials around the world.
  2. CenterWatch. Patients can get information about clinical trials, health associations, and even receive trial notifications with this service.
  3. Clinical Trials Search.org. Search for clinical trials in the US or internationally by condition, location, or sponsor at this site.
  4. Clinical Connection. Not only can you find clinical trials here, but you can also receive notifications, participate in message boards, and get an education about clinical trials.
  5. The Center for Information & Study on Clinical Research Participation. Before starting a clinical trial, visit this site to become an informed participant.
  6. International Clinical Trials Registry Platform. This portal from the World Health Organization provides access to information on clinical trials being conducted around the world.
  7. CanadaTrials. Find current clinical trials in Canada at this site.

Specific Carbohydrate Diet

This diet has a huge following among those with Crohn’s. These resources offer articles, recipes, places to buy equipment, and more.

  1. SCD Recipe. If you are following the SCD, then this resource is a great place to get recipes and even read the blog for the latest news and information about Crohn’s.
  2. Breaking the Vicious Cycle. Read about the SCD, find information and news, locate support groups of people following this diet, and more.
  3. Lucy’s Kitchen Shop. This site sells items used by those following the SCD, but it also includes information about this diet.
  4. SCDiet.com. Learn about the history of this diet, read the first chapter of Breaking the Vicious Cycle, and find out about more books, DVDs, and CDs.
  5. SCD Bakery. Check out baked goods that adhere to the SCD diet at this site.
  6. Grain-Free Gourmet. While the goal of this site is to promote this cookbook, you can also find sample recipes, information about the SCD, and even read it all in French, if you like.
  7. SCDiet.net. A huge resource for SCD, this site offers recipes, links to other resources, a mailing list, and much more.
  8. SCD Web Library. This invaluable resource includes support, recipes, success stories, FAQs, links to other resources, and more.
  9. SCDUK. Out of the UK, this not-for-profit site offers support, information, and recipes for those following the SCD in order to ease symptoms of Crohn’s as well as Celiacs, colitis, and other digestive disorders.
  10. Intestinal Health Through Diet. This site provides information on the SCD, tips for starting and maintaining the diet, recipes, resources, and even a local support group if you live in or near Austin, TX.
  11. The Specific Carbohydrate Diet – communicatrix. The communicatrix offers suggestions, advice, resources, and more as a second-generation Crohn’s sufferer following the SCD.

Crohn’s Blogs

Blogs are an excellent way for those with Crohn’s to read about how others live with the disease as well as find a community of support.

  1. Advocacy for Patients with Chronic Illness. Written by a lawyer and Crohn’s disease sufferer, this blogger provides information about chronic illness and patient advocacy as well as writing about her own struggles with chronic illness.
  2. I’d Like to Buy a Bowel. This young woman not only blogs about her Crohn’s, but actively works to raise awareness and funds for further research.
  3. The Bright Side of Crohn’s. Posts here are written by a young woman newly diagnosed with Crohn’s and include tons of information from learning the facts about Crohn’s to a personal, heartfelt letter to Crohn’s.
  4. crohn’s disease – living with crohn’s disease. Find natural solutions, medical research and news, and personal experience from this man who has been living with a Crohn’s diagnosis since his early 20s.
  5. I hate my guts!. Jenni chronicles her experiences with Crohn’s in this very real description of living with the illness.
  6. I live, therefore; I dump. This young woman shares her Crohn’s experiences, provides recipe ideas, and offers a glimpse of what it’s like to live with Crohn’s.
  7. The Crohnsicle. Read about updates in the new of Crohn’s treatment, share the experiences of this man’s experience with Crohn’s, or laugh over his list of euphemisms for pooping.
  8. Kelly’s Crohn’s Blog. Kelly posts monthly check-ins, updates with news about Crohn’s, and offers her experience and emotional response to the disease.
  9. Sugar and Spice and my gluten-free life. This young woman blogs about her life with Crohn’s and her gluten-free diet. The photos of the food are mouth-watering.
  10. Crohn’s News. From Medical News Today, get the latest news reports that pertain to Crohn’s disease at this blog.

Chronic Illness Blogs

Not specifically focusing on Crohn’s, these blogs do offer a look at living with chronic illness and provide validation and empowerment to others.

  1. ChronicBabe.com. Women who are dealing with chronic illness will find lots of advice and support at this award-winning blog.
  2. ChronicTown. Dealing with a rare chronic illness while parenting and writing, this blogger shares her ups and downs of life.
  3. ChronicallyMe. As this blogger deals with her chronic illness, she blogs about the challenges and conquests of chronic illness.
  4. Through Myself and Back Again. This woman shares her experiences with a genetic disorder and being an advocate for those with disabilities.
  5. chronic holiday. Part of living with chronic illness or disability is hearing crazy things come out of people’s mouths. This blog is dedicated to some of the things people have said to this blogger in the course of the illness.
  6. Professional Patient. This blog offers suggestions for managing chronic illness and disability and managing the world of insurance.
  7. sick girl speaks!. This girl hasn’t let chronic illness slow her down. As a writer and speaker, her blog is an extension of her work as an advocate for patients and and those who live with chronic illness.
  8. Farty Girl. Diagnosed with IBS and lactose intolerance, this woman is now possibly gaining a celiac diagnosis. She blogs about her experiences with going gluten-free and dealing with digestive disorders.

Food and Recipe Blogs

Living with Crohn’s often means changing the way you eat. These blogs have recipes, share diets, and often infuse a warm sense of belonging.

  1. Eating SCD – the Specific Carbohydrate Diet. This blogger credits the SCD for his Crohn’s remission and blogs about the diet, news about Crohn’s, and more.
  2. bethsblog. This woman has a daughter with Crohn’s and they both followed the SCD for one year. Find interesting posts about this diet as well as others, food, art, and more.
  3. The Dietary Adventures of Jilluck. Suffering from Crohn’s, this woman discovered the SCD and relief. Get plenty of great food ideas from her blog.
  4. Cooking for Celiacs, Colitis, Crohn’s and IBS. Get plenty of recipes and information about health and nutrition as it applies to these digestive disorders from this popular blog.
  5. No More Crohn’s. Erin offers advice on cooking and storing food for the SCD on her blog. Also check out her website for more information, ideas, and support.
  6. Straight into Bed Cakefree and Dried. This gluten-free blogger follows the SCD and posts lots of recipes along with information about gluten-free eating.
  7. Thyme on My Hands. This blogger, diagnosed with Crohn’s, offers recipes (most SCD-compliant) as well as links to other resources.
  8. Kat’s Food Blog. Get suggestions for SCD meals and preparation, recipes, and more from this blogger.
  9. Gluten-Free Girl. This popular blog is written by a woman with Celiac and includes both delicious recipes and gorgeous photos of her creations.
  10. A Gluten Free Guide. Get gluten-free recipes as well as mini gluten-free restaurant reviews from restaurants in major cities.

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