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Information Resources for alt.support.crohns-colitis newsgroup Frequently Asked Questions Version 4.01 Last revision-11/29/00 INTRODUCTION The following is the information resources FAQ for alt.support.crohns-colitis, including an introductory section explaining the purpose of the newsgroup. This FAQ is and will continue to be a "work in progress", meaning that additions and corrections will always be welcome, just email me at email@example.com. There are currently three other FAQs for this newsgroup - the Inflammatory Bowel Disease FAQ, which answers tons of questions about Ulcerative Colitis and Crohn's Disease, the Irritable Bowel Syndrome FAQ, which is equally informative about IBS, and the Collagenous Colitis FAQ, which provides detailed information about a less prevalent form of IBD. The first two FAQs are posted every two weeks to alt.support.crohns-colitis, news.answers and alt.answers, and are available by anonymous ftp to rtfm.mit.edu, in pub/usenet-by-group/alt.support.crohns-colitis. All 4 FAQs are also available through the World Wide Web at qurlyjoe.bu.edu/cduchome.html. COPYRIGHT AND DISCLAIMER See the end of this FAQ for a whole lot of boilerplate language designed to ensure that this FAQ is only used by the forces of goodness and not of greed, and that no one ever accuses me of impersonating a medical professional. What is alt.support.crohns-colitis? Alt.support.crohns-colitis was created in early 1994 as a forum where people suffering from ulcerative colitis, Crohn's Disease, and irritable bowel syndrome can share their everyday struggles with these illnesses, as well as discuss medicines, treatments, surgery, diet, health care providers, related illnesses, and anything else anyone can think of that relates to these diseases. In other words, this is the online equivalent of a support group, which means that no question is stupid and no condition embarrassing here. It also means we're all here to help each other out, so please be nice, be polite, and no flaming. Discussions of all types of medicine- conventional and alternative, Western and Eastern, your Aunt Harriet's home remedies, whatever- are welcome here; however, any person discussing a potential remedy which he or she also sells must explicitly begin the Subject header of their post with the word "Ad" or "Advertisement" in all caps, regardless of whether or not they profit from such sales. Spamming is expressly forbidden as violating the rules of netiquette as well as those of this newsgroup. Finally, please keep in mind that no one knows what causes these illnesses, no one's come up with a cure, and we need all the help we can get. Commonly-used abbreviations in this FAQ and on alt.support.crohns-colitis (a.s.c.-c): IBD- inflammatory bowel disease- includes Crohn's Disease and ulcerative colitis IBS- irritable bowel syndrome UC- ulcerative colitis CD- Crohn's Disease CC- Collagenous Colitis CCFA- the Crohn's and Colitis Foundation of America UOA- the United Ostomy Association NSAIDS-nonsteroidal anti-inflammatory drugs (examples are aspirin, ibuprofen, and naproxen. Acetaminophen (Tylenol) is *not* an NSAID. WWW- World Wide Web QUESTIONS ANSWERED IN THIS FAQ 1.0 I've just been diagnosed with IBD and I've never heard of it before, don't know anyone else with it, and am feeling all sorts of unpleasant feelings as a result. Where do I begin finding out enough about this illness to cope- are there organizations out there that can help me? 1.0.1 What support organizations exist in the US? 1.0.2 What support organizations exist in Canada? 1.0.3 What support organizations exist in the UK? 1.0.4 What support organizations exist in Ireland? 1.0.5 What support organizations exist in Austrailia? 1.0.6 What support organizations exist in Austria? 1.0.7 What support organizations exist in Belgium? 1.0.8 What support organizations exist in Denmark? 1.0.9 What support organizations exist in France? 1.0.10 What support organizations exist in Germany? 1.0.11 What support organizations exist in Italy? 1.0.12 What support organizations exist in Luxembourg? 1.0.13 What support organizations exist in New Zealand? 1.0.14 What support organizations exist in The Netherlands? 1.0.15 What support organizations exist in Norway? 1.0.16 What support organizations exist in South Africa? 1.0.17 What support organizations exist in Spain? 1.0.18 What support organizations exist in Sweden? 1.0.19 What support organizations exist in Switzerland? 1.0.20 What support organizations exist in Zimbabwe? 1.1 I'm already a member of one of the above organizations, and I need additional support in a specific area or additional knowledge on certain topics. What other organizations are out there that I might find useful? 1.1.1 What organizations are there for people with colostomies or ileostomies? 1.1.2 What organizations are there for people using tube or intravenous feeding? 1.1.3 Hey, I thought this newsgroup was for people with IBS too! How about a support organization for us? 2.0 Are there any other places on-line that I can find out more about IBD, IBS and similar illnesses? 2.1 Are there any Web sites I should check out? 2.2 Are there other sources of information here on the Internet? 2.3 Is there help on the commercial on-line service Prodigy? 2.4 Is there a support group on the commercial on-line service America On-Line? 2.5 How about if I want to do some serious research about IBD, IBS or other illnesses? 3.0 I want to read as much as I can about these illnesses. Have any books been written on the subject of IBD or IBS? 3.1 Are there other useful books about coping with chronic illness? ================================================================ 1.0 I've just been diagnosed with IBD and I've never heard of it before, don't know anyone else with it, and am feeling all sorts of unpleasant feelings as a result. Where do I begin finding out enough about this illness to cope- are there organizations out there that can help me? 1.0.1 What support organizations exist in the US? If you live in the U.S., start by contacting CCFA- the Crohn's and Colitis Foundation of America, 386 Park Avenue South, 17th Floor, New York, NY 10016-8804, at 1-800-932-2423 or 212-685-3440, fax 212-779-4098. They have books to buy (see below), newsletters to subscribe to, support groups to join in many areas, information about doctors to see, and they are major fundraisers/supporters of research into the causes of IBD and hopefully, eventually, a cure. Website: www.ccfa.org Another U.S. organization worth contacting is the Intestinal Disease Foundation, 1323 Forbes Avenue - Suite 200, Pittsburgh, PA 15219, 1-412-261-5888. This is a very patient-friendly, hard-working, and savvy non-profit organization that provides support and education to individuals with any intestinal disease. They serve many patients with Crohn's and colitis, and also fill specialty niches which CCFA does not, i.e. also helping those with irritable bowel, diverticular disease, short-gut syndrome, and "gas". The Foundation's executive director is Carolyn Russ, who coordinates a large cadre of volunteers. The Foundation also puts out a quarterly newsletter which is quite informative. The National Digestive Diseases Information Clearinghouse, 2 Information Way, Bethesda, MD 20892, 301-654-3810, is a government-funded agency that provides information to patients, families, and medical professionals. They answer questions, coordinate informational resources on digestive diseases, and distribute publications about many conditions. Website: www.niddk.nih.gov The Pediatric Crohn's and Colitis Association, P.O. Box 18, Newton, MA 02168-0002, 617-290-0902, supports research and addresses medical, nutritional, psychological, and social factors relating to pediatric and adolescent Crohn's disease and ulcerative colitis. They can also give you the names of specialists in your area. Reach Out for Youth With Ileitis and Colitis, 15 Chemung Pl. Jericho, NY 11753, 516-822-8010, Fax : 516-822-8885., provides nationwide information and telephone support for social as well as medical issues. In the New York region, they organize educational seminars and individual and group support for patients and their families. If you call you can ask for a free sample of their quarterly newsletter Inner Circle. The Gastro-Intestinal Research Foundation of Chicago (GIRF) provides funds to support researchers at Uchicago's Gastroenterology Division. For more information about GIRF, contact: The Gastro-Intestinal Research Foundation, 70 East Lake Street, Suite 1015, Chicago, Illinois 60601-5907, tel (312) 332-1350. Website: homepage.interaccess.com/~ring/girf 1.0.2 What support organizations exist in Canada? If you live in Canada, you can contact the Crohn's & Colitis Foundation of Canada, 21 St. Clair Avenue East, Suite 301, Toronto, Ontario M4T 1L9, at 1-416-920-5035 or 1-800-387-1479. Website: www.ccfc.ca/site.html. Another Canadian organization worth contacting is the Northwestern Society of Intestinal Research, c/o Vancouver Hospital & Health Sciences Centre, 855 West 12th Avenue, Vancouver, B.C., Canada V5Z 1M9, phone is (604) 875-4875. The Society is a federally registered charity, dedicated to supporting research and education into gastrointestinal diseases, with a particular focus on inflammatory bowel diseases such as Crohn's disease and ulcerative colitis. It has been in operation since 1976. Its mandate is two-fold: firstly, to raise monies to support research into intestinal diseases; and secondly, to educate the public, health professionals and patients about intestinal diseases. The educational aspect of the Society's mandate includes informational brochures and pamphlets printed and distributed regularly to hospitals, clinics, doctors and patients; two active support groups (one for Crohn's & Colitis patients, another for people with IBS, and a third for children and their families in the planning stages); a book and video library; and bi-monthly newsletter. The Society's Board includes Jan Greenwood, who wrote the "IBD Nutrition Book " listed below in the book portion of this FAQ. Website: www.interchg.ubc.ca/nsir/ For Canadians with Irritable Bowel Syndrome, Jeffrey Roberts runs the IBS Self Help Group, 3332 Yonge Street, P.O. Box 94074, Toronto, Ontario, M4N 3R1. Contact Jeffrey Roberts at 416-932-3311 or via email at firstname.lastname@example.org. Website: www.interlog.com/~ibs 1.0.3 What support organizations exist in the UK? If you live in the United Kingdom, you should contact the NACC- the National Association for Colitis and Crohn's Disease, PO Box 205, St. Albans, Herts, AL1 1AB, at 01727-844296 or 0800-655544 from inside the UK, or 01044-727-844296 from elsewhere. This number provides both answerphone and fax. There are around 58 Area groups covering all of the UK, and they publish a newsletter every month. The NACC also runs a voluntary helpline, called NACC-in-Contact. The helpline is a confidential service - callers details are never revealed to anyone. Anybody can call - patients, family or friends, at any tine of day. There are approximately 100 contacts spread all around the United Kingdom. Contact telephone numbers are available from NACC head office. For more information, you can also email email@example.com NACC website: www.nacc.org.uk The website also acts as the English language host for EFCCA, the European Federation of Crohn's and Colitis Associations. Dorset Chapter Website: www.hants.gov.uk/istcclr/cch06134.html or email Micahel Shillabeer, Dorset NACC-in-Contact, at firstname.lastname@example.org. Other helpful organizations include the Crohn's in Childhood Research Association (CICRA), 356 West Barnes Lane, Kingston-on-Thames, KT3 6NB, email at CICRA@unisonit.demon.co.uk, and the Steroid Aid Group, PO Box 220, Walthamstow, London, E17 3JR. 1.0.4 What support organizations exist in Ireland? Try the Irish Society for Colitis & Crohn's Disease (ISCC), Carmichael Centre, North Brunswick Street, Dublin 7, Tel: (353) 1 872 1416, Fax: (353) 1 873 5737. 1.0.5 What support organizations exist in Austrailia? If you live in Austrailia, be sure to contact the Australian Crohn's and Colitis Association (ACCA), P.O Box 201, Mooroolbark, 3138, Victoria, Australia. The phone number is Australia (03) 7269008. Like other support groups they publish a newsletter (quarterly), present talks and workshops, organise IBD Awareness campaigns, support local IBD groups and raise funds for continuing research. They also sell IBD books and videos and are only a phone call away if you need any advice or support. 1.0.6 What support organizations exist in Austria? Osterreichische Morbus Crohn/Colitis Ulcerosa Vereinigung (OMCCV), Obere Augartenstrasse 26-28, A-1020 Wien, Tel: (43) 1 333 06 33. Website: homepages.netway.act/oemccv/index.html 1.0.7 What support organizations exist in Belgium? Crohn en Colitis Ulcerosa Vereniging vzw (CCV), Schalmei 2 B-2970 'S, Gravenwezel, Tel./Fax: (32) 3 383 2045. 1.0.8 What support organizations exist in Denmark? Colitis Crohn Foreningen (CCF), Lyngevej 116, 3450 Allerod, Tel: (45) 4817 5132 or (45) 4814 2291. 1.0.9 What support organizations exist in France? Association Francois Aupetit (AFA), Hopital Rothschild, 33 Boulevard de Picpus, 75571 Paris, Cedex 12, Tel: (33) 1 40 193 425, Fax: (33) 1 40 193 436. 1.0.10 What support organizations exist in Germany? The German DCCV (Deutsche Morbus Crohn und Colitis Ulcerosa Vereinigung, i.e. German Crohns and Colitis Foundation), is located at DCCV e.V., Paracelsusstr. 15, D-51375 Leverkusen, Tel: (0049) 214-87608-0, Fax: (0049)-214-87608-88. e-mail email@example.com Website: ourworld.compuserve.com/homepages/DCCV/homepage.htm 1.0.11 What support organizations exist in Italy? Associazione per le Malattie Inflammatorie Croniche dell'Intestino (AMICI), Via Adolfo Wildt 19/4, 20138 Milano, Tel: (39) 2 289 3637. Lombardia Website: www.crs4.it/~gavino/AMICI/amici.html Ticino (Switzerland) Website: www.amici-ti.skywindow.com/Ticino 1.0.12 What support organizations exist in Luxembourg? Association Luxembourgeoise de la Maladie de Crohn (ALMC), PO Box 648, L-2016 Luxembourg, Tel: (352) 4798 2081, Fax: (352) 4798 2020. 1.0.13 What support organizations exist in The Netherlands? Crohn en Colitis Ulcerosa Vereniging Nederland (CCUVN), Wilhelminastraat 45, 3621 VG Breukelen, Tel./Fax: (31) 3462 61001. Website: www.spin.nl/croh0301.htm 1.0.14 What support organizations exist in New Zealand? Contact Crohn's & Colitis Support Groups at either P.O. Box 52043, Kingsland, Auckland, or 32 Bloomfield Terrace, Lower Hutt, Wellington. Website: home.clear.net.nz/pages/ccsg 1.0.15 What support organizations exist in Norway? Landsforeningen Mot Fordoyelessykdommer (LMF), Seglaveien 80, 2340 Loten, Tel: (47) 62 59 00 77. 1.0.16 What support organizations exist in South Africa? Contact the South African Crohn's & Colitis Association, P.O. Box 2638, Cape Town 800, Tel: (021) 25-2350. 1.0.17 What support organizations exist in Spain? Asociacion de Enfermos de Crohn y Colitis Ulcerosa (ACCU), Suriname 36, 29190 Puerto de la Torre, Malaga, Tel./Fax: (34) 5 223 4810. Website: www.vlc.servicom.es/accu Valencia Website: 22.214.171.124/digestiv/accu.htm Grupo Andaluz para el Estudio de la Enformedad Inflamatoria Intestinal (GAEEII) (Andalusian Group for the Study of Inflammatory Bowel Disease) Website: www.a2000.es/gaeeii 1.0.18 What support organizations exist in Sweden? Riksforbundet for Mag-och Tarmsjuka (RMT), Box 20054, 104 60, Stockholm, Tel: 08-6424200, Fax: 08-6421100. Website: home5.swipnet.se/~w-53294 1.0.19 What support organizations exist in Switzerland? Schweizerische Morbus Crohn/Colitis Ulcerosa Vereinigung (SMCCV), Postfach, 5001, Aarau, Tel: 062 824 87 07. 1.0.20 What support organizations exist in Zimbabwe? Contact Zimbabwe Association for Colitis & Crohn's Disease, 2 Montclaire Close, Borrowdale, Harare, Tel: Harare 885556. 1.1 I'm already a member of one of the above organizations, and I need additional support in a specific area or additional knowledge on certain topics. What other organizations are out there that I might find useful? 1.1.1 What organizations are there for people with colostomies or ileostomies? If you've had a colostomy or ileostomy, tremendous support is provided by the United Ostomy Association (UOA), 36 Executive Park, Suite 120, Irvine, CA 92714, phone 1-800-826-0826 or 1-714-660-8624, fax 1-714-660-9262. Website: www.uoa.org There is also the Quality Life Association, 112 Grey Street, Millen, GA 03442, phone 1-912-982-2340; website www.bayside.nt/npo/QLA; Help for Incontinent People (HIP), PO Box 544, Union, SC 29379, phone 1-803-579-7900; and the Wound, Ostomy and Continence Nurses Society (WOCN), 2755 Bristol Street, Suite 110, Costa Mesa, CA 92626, phone 1-714-476-0268, website www.wocn.org In England, try the British Colostomy Association, 15 Station Road, Reading, Berkshire RG1 1LG, tel: 0118 939 1537, fax: 0118 956 9095, website: www.bcass.org.uk/ or the Ileostomy Association, Amblehurst House, Box 23, Mansfield, Notts NG18 4TT. The Interneational Ostomy Association is an Association of Ostomy Associations, created to improve the life of ostomates worldwide. For more info check out their Website: www.ostomyinternational.org The J-Pouch Group can be found at www.j-pouch.org For those considering colorectal surgery, check out the Cleveland Clinic Colorectal Surgery page at www.ccf.org/pc/cors/ You can also try contacting ConvaTec Professional Services, PO Box 5254, Princeton, NJ 08543, phone 1-800-422-8811. This is a company that wants to sell you their brand of ostomy, but they also publish a free newsletter every three months - the Better Together Club Newsletter- that is very informative. Website: www.convatec.com If you're using Hollister products and you have questions regarding them, they can be reached in the US at 1-800-323-4060, and in Canada 1-800-263-7400. Website: www.hollister.com Ivy Hill Products, a mail order company that specializes in incontinent care, has a Web page devoted to incontinence supplies. You can order by calling their number (800) IVY-3353. Website: ourworld.compuserve.com/homepages/ivy 1.1.2 What organizations are there for people using tube or intravenous feeding? For people living with home parenteral and/or enteral nutrition (tube or intravenous feeding such as TPN) there's the Oley Foundation, which publishs a monthly (or so) newsletter, sponsors seminars, and has a lending library of videotapes, all aimed at educating & empowering the HomePEN consumer (they refuse the word "patient"). Although many conditions/diseases are represented, a significant percentage of their members are people with IBD (mainly Crohn's). All that's needed to become a member is to _be_ on Par/Enteral feeding - there are no dues or membership fees, although they do gently request donations (much of their money comes from corporate grants/gifts from various home care companies). The Oley Foundation can be reached at 1-800-776-OLEY, address 214 HUN Memorial, A-23 Albany Medical Center, Albany, New York 12208. The newsletter is called _LifelineLetter_ and is sent FREE of charge to those on long term home parenteral or enteral nutrition. Website: web.wizvax.net/oleyfdn 1.1.3 Hey, I thought this newsgroup was for people with IBS too! How about a support organization for us? People with Irritable Bowel Syndrome can join the International Foundation for Functional Gastrointestinal Disorders (IFFGD). The address to write to for more information is IFFGD, P.O. Box 17864, Milwaukee, WI 53217. Phone toll free at 1-888-964-2001 for one on one support or information. Email is firstname.lastname@example.org and the website is www.execpc.com/iffgd IFBD changed their name about one year ago to: IFFGD - the International Foundation for Functional Gastrointestinal Disorders. This is a patient organization with a distinguished worldwide medical advisory board. Their address remains the same: PO Box 17864, Milwaukee, WI 53217. They have a web site at: http://www.execpc.com/iffgd Toll free phone (for one on one support or info. 1-888-964-2001) E-mail: email@example.com and 2.0 Are there any other places on-line that I can find out more about IBD and IBS? Plenty. A computer and a modem are among the most valuable information tools a chronically ill person can have. 2.1 Are there any Web sites I should check out? Plenty. So many, in fact, that I doubt I'll ever be able to list them all However, Bill Robertson may have succeeded in doing exactly that at his Crohns Disease/Ulcerative Colitis/Irritable Bowel Syndrome website at qurlyjoe.bu.edu/cduchome.html. Not only can all FAQs for alt.support.crohns-colitis be found at this location, but links to more related websites than you can possibly imagine are here. In fact, after visiting Mr. Bill's site, you may never need to read further. Another great Web Site is www.kitsap.net/health/ccl/ibd.html. Here you'll find all past issues of IBDetails, a very informative and entertaining newsletter devoted to IBD. Paul Neal has also started an IBD Home Page at this site, with a collectionof IBD related sites. The URL for this page is www.kitsap.net/health/ccl/index.html. The new SCOPE Newsletter is be available at this site at the following URL: www.kitsap.net/health/ccl/scope.html. Information on gastrointestinal, liver and nutritional disorders can be found at the COLUMBIA UNIVERSITY GASTROENTEROLOGY WEB, home page of the Division of Gastroenterology at Columbia University's College of Physicians and Surgeons and The Presbyterian Hospital in The City of New York. The URL is cpmcnet.columbia.edu/dept/gi. Scripps Clinic Inflammatory Bowel Disease Center can be found at www.free.cts.com/crash/y/yekkim/index.html Also check out the University of Pennsylvania Digestive and Liver Center at www.med.upenn.edu/~gicenter Gastroenterologist Steve Holland has an informative IBD Page at 126.96.36.199 Fellow Crohn's patient Anthony Longo answers your questions about medication at users.aol.com/cducrx/crohns.html Statlander's Pharmacy, a mail-order pharmacy, has an IBD focus area at www.stadlander.com/ibd The Olde Crohn is a nonprofit ejournal on Crohns, Colitis and Inflammatory Bowel Disease. It is produced every other month by volunteers and through the donation of online time from Novus Research. The Olde Crohn is free and may be freely copied and distributed. It can be found at ftp://ftp.etext.org People with Crohns, Colitis, and ostomies can contact others in similar situations at The First Dutch Ostomy Homepage, www.worldcity.nl/~rump/vereg.html. A website by a bunch of guys with their very own gastroenterology practice can be found at http://www.gastro.com. Lots of neat pictures of healthy and not-so-healthy parts of the body can be found here. CenterWatch, a publishing company that covers clinical research, has established a site on the Internet that patients can use to search for clinical trials by therapeutic area and by geographic region. Each posting contains contact information. The site currently includes several postings for trials for treating immune-system disorders. The Internet address is: www.centerwatch.com. In addition, CenterWatch offers a free e-mail notification service for patients interested in clinical trials. To use this service, send CenterWatch an e-mail message at Cntrwatch.aol.com. Tell them the therapeutic area you are interested in and your home state (or geographic region if you want to know about a greater selection of trials.) They will then send you an e-mail message whenever a hospital or medical center in your designated geographic region posts a trial for that therapeutic area. The message will contain the appropriate contact information. Please note: The center or physician posting the study is not provided your name or e-mail address. The decision to contact the center is the patient's alone. PharmInfoNet, a Web site devoted to pharmaceutical information, has FAQs on many drugs. Find them at pharminfo.com. Check Out the Multimedia Medical Reference Library at www.med-library.com. It's one of the most (if not the most) comprehensive indices to medical sites on the web. Another comprehensive index is the Hardin Meta Directory of Internet HealthSources (aka Hardin MD). It's URL is: www.arcade.uiowa.edu/hardin-www/md.html www.arcade.uiowa.edu/hardin-www/md-gastro.html (Gastroenterology). Don Wiss has set up the following webpages of interest: The IBS Page: www.panix.com/~ibs/ The Gluten-Free Page: www.panix.com/~donwiss/ The No Milk Page: www.panix.com/~nomilk/ The Candida Page: www.panix.com/~candida/ The Irritable Bowel Syndrome Page also includes some links on constipation, diarrhea, and gas. The Gluten-Free Page covers celiac disease, gluten sensitivity, and dermatitis herpetiformis. The No Milk Page covers material on lactose intolerance, milk allergy, and casein avoidance. Alan Kennedy makes the argument for mycobacterium paratuberculosis as a causal agent of Crohn's Disease on his website at www.crohns.org Recipes from a colitis cookbook can be found at ourworld.compuserve.com/homepages/colitis_cookbook Peter Waite's Crohn's Disease Web Page can be found at members.aol.com/bospol/homepage/crohns.htm Go to www.public.iastate.edu/~sbilling/ada.html for lots of links to ADA and disability information. Only applicable, of course, to U.S. workers. Look up a doctor's credentials at AMA Physician Select www.ama-assn.org Since many IBD sufferers also have arthritis of one form or another, I thought I'd include the web address for the Arthritis Foundation, at www.arthritis.org Finally, there are lots of great personal Webpages by and for people with IBD out there. Here are some to check out: GutFeelings- members.aol.com/RickAtheDJ/GutFeelings.html IBD Creative Outlet- members.aol.com/HobbsHs/ibd/ibd.htm Pouchclip(ostomy support)- www.hsv.tis.net/~kerryk/Pouchclip/ Sandra's Crohn's Disease Page- www.angelfire.com/ga/crohns/index.html Teens with Crohn's Disease- pages.prodigy.com/teencron/index.html 2.2 Are there other sources of information here on the Internet? Alt.support.ostomy is a newsgroup for all people with ostomies. Alt.support.ibs is a newsgroup specializing in discussion of irritable bowel syndrome. You can subscribe to an invaluable mailing list called the IBDList Digest. Simply e-mail a note saying you wish to subscribe to firstname.lastname@example.org. The moderator is Thomas Lapp. There's also a newsgroup called sci.med where a variety of medical questions are asked and answered, often by doctors and other medical professionals. For those interested in alternative treatments, check out misc.health.alternative. People interested in information about celiac disease (nontropical sprue), a small intestine illness resulting from gluten intolerance, can join the Celiac mailing list by sending the message: SUB CELIAC to: email@example.com. Gluten-free recipes can be found through 2.3 Is there help on the commercial on-line service Prodigy? On Prodigy there's a lively support group for people with IBD or IBS on the Medical Support Board, topic Crohn's and Colitis. Phone 1-800-PRODIGY for information on how to subscribe. 2.4 Is there a support group on the commercial on-line service America On-Line (AOL)? Yes, and the instructions for accessing it are as follows: 1) Go to Keyword: Health, 2) Click on "Message Boards", 3) Click on "Self-help & Support". There is also a support group that meets for real time chat in Private Room CROHNSCOLITIS. The group meets Sunday nights at 9pm eastern, and Tuesday and Wednesday nights at 8 pm eastern. The group has received positive reviews, with many commenting that it is "the friendliest room online with everyone receiving massive greetings upon entering the room." The group has also been putting out a free monthly e-mail newsletter since February 1996. To get to the room, enter The People Connection. Click on the icon that says List Rooms. Click on Private Room, and type CROHNSCOLITIS. Note that the group is not an official entity of AOL; instead, the meetings are kept in a private room to avoid the "structure and regimentation" of AOL's TOS. (terms of service.) 2.5 How about if I want to do some serious research about IBD, IBS or other illnesses? MEDLINE is your best bet. There are a few Websites at this point that offer free MEDLINE, meaning your searches will result in abstracts, or short summaries, of medical journal articles the full text of which can be ordered if desired for a fee. The main site is the US National Library of Medicine at www.nlm.nih.gov Another good site is Medscape, www.medscape.com 3.0 I want to read as much as I can about this illness. Have any books been written on the subject of IBD or IBS? Here's a list of books written on one or the other or both of these subjects. Some of the books are reviewed; special thanks to Sheila Ruffell for taking the time to review them and giving me permission to use her reviews. "The Crohn's Disease and Ulcerative Colitis Fact Book", edited by Peter A. Banks, M.D.; Daniel H. Present, M.D.; and Penny Steiner, M.P.H. (Scribner's, 1983) -available from CCFA. ISBN 0-684-17967-9 (hardcover). Can be purchased online at www.ccfa.org "Treating IBD: A Patient's Guide to the Medical and Surgical Management of Inflammatory Bowel Disease", Lawrence J. Brandt and Penny Steiner-Grossman (Raven Press, 1989) -available from CCFA. ISBN 0-88167-532-6 (paperback). Can be purchased online at www.ccfa.org This book was sponsored by the Crohn's & Colitis Foundation of America, and is a good overall reference book on all aspects of the diseases. If you are new to IBD and want more information on drugs, treatments, possible complications, types of surgery, etc. this book is an excellent source from the medical perspective. Reading a similar book as a newly diagnosed patient, I was somewhat aghast at the possible range of complications. Six years later, having met and survived many of them, I think it probably did help to know in advance what could happen and what the alternatives for handling the problems are. _________________________________________________________________ "The New People ...not Patients- A Source Book for Living with Inflammatory Bowel Disease", Penny Steiner-Grossman, M.P.H., Peter Banks, M.D. and Daniel H. Present, M.D. (Kendall/Hunt Publishing, 1992) -available from CCFA. ISBN 0-8403-7029-6 (trade paperback). Can be purchased online at www.ccfa.org "Managing Your Child's Crohn's Disease or Ulcerative Colitis", Keith Benkov, M.D. and Harland Winter (Mastermedia, 1996). Available from CCFA. ISBN 1-57101-023-0 9 (hardcover). Can be purchased online at www.ccfa.org "The Angry Gut- Coping with Colitis & Crohn's Disease", W. Grant Thompson, M.D. (Plenum, 1993). ISBN 0-306-44470-4(hardcover). This is a technical overview of IBD covering anatomy, how the gut works, history and epidemiology, possible causes, treatments and complications and medications (not entirely up to date as the book was published in 1989). The book claims in it's foreword to be written for the layman, but be forewarned the anatomy chapter is quite detailed with lots of medical terminology. Let's put it this way, after reading this chapter you will be able to understand the research reports in the national newsletter! (Do you know the difference between your sub-mucosa and your myenteric plexus?) The remainder of the book is more 'reader-friendly' with lots of good information for the newly diagnosed. Interesting statistics included the fact that, in Europe and North America, the incidence (number of new cases per year) of IBD is 15-20 per 100,000, and the prevalence (number of sufferers) is 150 to 200 per 100,000. That translates into statistics for Victoria (population @ 350,000) of 52 to 70 new cases per year and 525 to 700 sufferers. No wonder the gastros are so busy! The good news is that a study of Crohn's patients in Copenhagen showed that any one time, 45% were in complete remission and another 25% had a low level of activity. 75% were able to work normally, and mortality was no different than the general population. The statistics for Ulcerative Colitis were even better as many were 'cured' permanently by a colectomy. This is a good information book, although the title is somewhat misleading as not much was covered as to "coping" with it. _________________________________________________________________ "Crohn's Disease & Ulcerative Colitis", Dr. Fred Saibil, M.D, (Firefly Books,1997). ISBN 1-55209-114-7 (paperback). "Eating Right for a Bad Gut- The Complete Nutritional Guide to Ileitis, Colitis, Crohn's Disease and Inflammatory Bowel Disease", Dr. James Scala (Plume, 1992). ISBN 0-452267668 (paperback). This is the most useful and informative book on how to eat when you have IBD. As well as complete, up to date information on all aspects of nutrition, he also presents the findings of surveys from at least 100 people with IBD as to what they can and can't eat. as well as how to prepare foods so that they won't upset you. He makes the point that fibre will help with diarrhea, but it must be soluble fibre (such as that found in bananas and metamucil) and not insoluble fibre, such as that found in bran and raw vegetables. He suggests peeling all fruits and vegetables and cooking them to the mushy stage before eating them. You can retain your nutrition by using the cooking water in soups, etc. and he also suggests a good level of supplementation for all nutrients-at least 50% of RDAs. Included in the book are some useful lists on what foods are well tolerate (Do's), what ones are tolerated by some people if cooked well (Caution foods) and foods that seem to bother the majority of people with IBD (Don'ts). Included in the don't were: chocolate of any type, beets, beet juice, cabbage, fresh or cooked corn, blackberries, raspberries, nuts, unless ground into nut butters, all deep fried or very fatty foods. As well as being generally bothered by foods high in fat or insoluble fibres, each person also can have food sensitivities to foods that are generally well tolerated. Dr. Scala recommends keeping a food diary of food eaten and symptoms and looking for patterns. Try removing different foods or food groups one at a time to see if symptoms lessen. He cautions not to accept you can't eat a food because of one bad reaction, always test at least three times to be sure. Dr. Scala is to be commended for attempting this type of study, as it is so difficult to establish scientifically with studies one diet that will work for everyone when each person's reactions are so varied, and also people's own tolerances very over time depending how active their disease is. I think all of us with IBD tend to get paranoid about food and tend to blame what ever we ate just before a bad attack, and we need to bear in mind other factors such as stress, fatigue and changes in medication before blaming the food. ________________________________________________________________ "Inflammatory Bowel Disease: A Guide for Patients & Their Families", Stephen Hanauer, (Lippincott-Raven, 1997). ISBN 0397517718. (paperback). "The Complete Book of Better Digestion- A Gut-Level Guide to Gastric Relief", Michael Oppenheim, M.D. (Rodale, 1990). ISBN 0-87857-869-2 (hardcover). This is a very general book on the digestive system, with only one small chapter on IBD, and not much detail. However, if you're looking for a primer on how the digestive system works, common problems, and which drugs and over-the-counter remedies work best, this is a good book. Curiously, he says under the section on the ileum that there are no major serious diseases of this part of the digestive tract! He also reports an interesting study where doctors tried to establish, by using endoscopy before and after, the effects on the stomach of a bland meal of meat and fries, a bland meal plus six aspirin or a spicy meal containing either Mexican peppers or a pepperoni pizza. Much to their surprise, although they found definite damage from the aspirins, there was no damage from the spicy food. Even when they ground up hot jalapeno peppers and sprayed it directly on the stomach lining, there was no damage. This doctor has a very cynical approach to the medical system and I much enjoyed his "advice" Here I have quoted some of the best: Helpful Hint: Never mind that physicians are fairly intelligent. When explaining your problem, assume that your doctor is rather dim. Use simple world like "pain", "itch", "sharp", "dull". Always describe your symptoms, but never give a diagnosis, even it it's something any idiot should know. Believe it or not, when a patient says that he had "the flu", I haven't the foggiest notion what that means. Myth: Tasteless food is soothing , while tasty food is irritating. Deep Dark Secret: Now and then your doctor hasn't the faintest idea of what your problem is. This happens more often than you'd guess. I prefer to stall. It takes a sophisticated doctor to procrastinate properly. Another Deep Dark Secret: When a doctor sends you for a large series of "tests" one important purpose is to give him time to think. While you are having blood drawn, he may be poring though a medical book, phoning a specialist, or simply planning his next move if the tests are unrevealing, which they usually are. Helpful Hint: If you want a doctor to take you seriously, insist that your symptoms occur at night. People sleep at night, diseases don't. Daytime symptoms are more likely to be stress-related. Helpful Hint: Inaction is the best treatment for a host of medical problems. Patients (doctors, too, espeacially surgeons) should use it more often. Helpful Hint: Cortisone makes everything feel better, but it doesn't cure anything. Helpful Hint: The less you take of a drug, the fewer side effects it has. Pearl of Wisdom: re the number of ulcers rising in women vs. men: Blaming a disease on stress is an ancient and honorable tradition, but it works best when we're ignorant. Notice what happens to that clever explanation when I add another statistic: Heart attacks have also declined for the past thirty years, but they're dropping equally fast in men and women. Myth: If a treatment is painful or dangerous, it must be Powerful. Reading of the horrible ordeals patients in primitive tribes willingly endure, no one should feel superior. All humans believe this myth. On a superficial level, my patients are convinced that an injection works better than a pill. A Deep, Dark Secret: Despite our years of training, doctors draw many conclusions by looking at a patient and thinking, Looks sick, or, Doesn't look sick. Furthermore, we're usually right. When a patient insists that he or she is sick, but I see someone who looks okay, I know I'm in for a difficult time. An Oppenheim Rule: You can't prevent everything. An Oppenheim Rule: Stress makes everything worse, but it doesn't cause anything. Relieving stress makes everything more tolerable, but it doesn't cure anything. ________________________________________________________________ "The IBD Nutrition Book", Jan K. Greenwood (John Wiley & Sons, 1992). ISBN 0-471-54630-5 (paperback). Also available through the Crohn's & Colitis Foundation Of Canada at 1-800-387-1479. "Inflammatory Bowel Disease: A Clinical Approach", Henry D. Janowitz, MD (Oxford Univ. Press, 1994) ISBN: 0195078306 (hardcover). "A Special Kind of Cookbook", Mary Sue Waisman (CCFC Calgary Chapter, 1989). "Your Gut Feelings - A Complete Guide to Living with Intestinal Problems", Henry D. Janowitz, M.D. (Oxford University Press, 1994). ISBN 0-19-5089136-7 (paperback). This is a more general book covering other intestinal problems besides IBD, such as irritable bowel syndrome, diverticulosis, colon cancer, food allergies, the aging gut, gas, effects of medications on the gut, and the brain-gut connection. The illustrations of the digestive tract are well done and much less technical than the above book, It had some good information on the various places you can feel intestinal pain and what they likely indicate. The information on IBD is brief, but a good overview for someone new to the disease or someone still trying to figure out what their problem or problems might be. "Irritable Bowel Syndrome And Diverticulosis, A Self Help Plan", Shirley Trickett (Thorsons Pub, 1992). ISBN 0722524013 (paperback). "The Wellness Book of I.B.S.: How to Achieve Relief from IBS and Live a Symptom-Free Life", Deralee Scanlon and Barbara Cottman Becnel (St. Martin's Press, 1991). ISBN 0312852266 (paperback). "IBS: A Doctor's Plan for Chronic Digestive Troubles: The Definitive Guide to Prevention and Relief", Gerard L. Guillory, M.D. (Hartley & Marks, 1996). ISBN 088179130X (paperback). "Irritable Bowel Syndrome: A Natural Approach", Rosemary Nicol and William Snape (Ulysses Press, 1995). ISBN 1569750300 (paperback). "7 Weeks to a Settled Stomach", Ronald L. Hoffman, M.D. (Simon and Schuster, 1990). Includes lots of alternative medicine therapies. ISBN 0-671-68234-2 (hardcover, also available in paperback). "Breaking the Vicious Cycle", Elaine Gottschall (The Kirkton Press, R.R. #1, Kirkton, Ont., N0K 1K0, phone 519-229-6795, fax 519-229-6969 1994). "The Gottschall Diet" - an alternative dietary approach to the treatment of IBD, diverticulitis, and chronic diarrhea. ISBN 0-9692768-1-8(paperback). "Gastrointestinal Health - A Self Help Nutritional Program to Prevent, Cure or Alleviate IBS, Ulcers, Gas, and other Digestive Diseases", Dr. Steven Peikin. (HarperPerenniel, 1992) ISBN 006098405-8 (paperback). This book is not specific to IBD and covers a lot of information about the process of digestion and how it works as well as a how to figure out what part of the digestive system is giving you symptoms. Includes a prescribed diet with recipes that is low protein, low fat, high fibre and low in sugar and refined foods. This diet is claimed to correct many digestive disorders from IBS to acid problems to diverticulosis, but although it may improve IBD, he never claims a cure and suggests checking with your doctor to make sure you can tolerate the high fibre. _________________________________________________________________ "Indigestion- Living Better with Upper Intestinal Problems from Heartburn to Ulcers and Gallstones", Henry D. Janowitz, M.D. (Oxford University Press, 1994), ISBN 019508554X (paperback). "Good Foods for Bad Stomachs", Henry D. Janowitz, M.D., (Oxford University Press, 1997), ISBN 0195087925 (hardcover). "Gastroenterology for the House Officer", edited by David B. Sachar, Jerome D. Waye, and Blair S. Lewis (William & Wilkins, 1989). Intended audience is doctors, but is relatively cheap ($20) as medical textbooks go. ISBN 0-683-07488-1 (paperback). "Healing Your Body Naturally- Alternative Treatments to Illness', Gary Null (Seven Stories Press, 1997). ISBN 1888363460 (paperback). Includes a big chapter on digestive disorders. As indicated by the title, this is a book of alternative treatments to common medical problems-arthritis, cancer, heart disease, etc. Some of them sound very exciting and worth investigating if you suffer from these problems. It has a chapter on digestive diseases but doesn't deal with IBD specifically, and again, it's high fibre, vegetarian approach, though it's undoubtedly very good for most people, may not be tolerated by those with active disease. There is a distinct anti-medical bias with lots of stories of wrong medication and diagnosis by the medical establishment, but also lots of hopeful stories of "spontaneous remissions" tied to health food type cures. _________________________________________________________________ "The Self-help Way to Treat Colitis and other IBS Conditions," De Lamar Gibbons, M.D.,(Keats Publishing, New Canaan, CT., 1992). ISBN 0-87983-536-2 (paperback). This book, written by an M.D. that suffered from colitis, describes dietary approaches based on his personal experiences. "Ileostomy Handbook - Stoma Care and Management Techniques", Anita L. Price, C.E.T. (Certified Enterostomal Therapist), Charles C. Thomas Publisher, 2600 South First Street, Springfield, Illinois 62717. ISBN 0-398-04931-9 (hardcover). "The Ostomy Book: Living Comfortably With Colostomies and Ileostomies," Barbara Dorr Mullen, Kerry Anne McGinn, (Bull Publishing, 1992). ISBN 0923521127 (paperback). "Triumph Over Disease--By Fasting and Natural Diet", Jack Goldstein, (Arco Pub. Co., c1977). ISBN 0668041382 (hardcover.), ISBN 0668041404 (paperback). The author's experience with Ulcerative Colitis. 3.1 Are there other useful books out there about coping with chronic illness? "After the Diagnosis: From Crisis to Spiritual Renewal for Patients with Chronic Illness", Joann LeMaistre (Ulysses Press, 1995). ISBN 1569750467. (paperback). "Alive and Kicking", Rolf Benirschke, (A K Productions, 1996). ISBN 1885553404 (paperback). "Beyond Rage: Mastering Unavoidable Health Changes", JoAnn LeMaistre, Ph.D. (Alpine Guild, Oak Park IL, 1993). Another good book on coping with chronic illness, written by a psychologist who developed multiple sclerosis as an adult. ISBN 0931712114 (hardcover). "Colitis (The Experience of Illness)", Michael P. Kelly (Tavistock, 1992). ISBN 0963387707 (paperback). "Crohn's, Colitis, Hemorrhoids and Me", Kathlene J. O'Leary (Anderson Press, 1995). ISBN 0964757133 (paperback). "Easy For You to Say: Q&As for Teens Living With Chronic Illness", Miriam Kaufman, M.D. (Key Porter Books, 1995). ISBN 1550136194 (paperback). "If This is a Test, Have I Passed Yet?", Ferne Sherkin-Langer, R.N., BScN (MacMillan Canada). ISBN 0-7715-9046-6. "Kitchen Table Wisdom: Stories That Heal", Rachel Naomi Remen, M.D. (Riverhead Books, 1996). ISBN 1573220426 (hardcover). "Living with Chronic Illness: Days of Patience and Passion", Cheri Register. (The Free Press, hardcover). A Bantam paperback edition of this book can be purchased from the author for $12 U.S. ($9.95 plus $2.05 postage). Mail to: Cheri Register, 4226 Washburn Ave, Minneapolis, MN 55410-1521. ISBN 055328438X. I can't recommend this book highly enough, I just couldn't put it down, which is high praise for a non-fiction book. The author herself suffers from a recurring invisible chronic illness (in her case liver trouble) and interviewed thirty other people in the course of preparing to write the book, several of whom had IBD. She deals with all the issues we face in the course of our illness: body image; effects on children, spouse and family; fears; balancing dependence and independence; work decisions; dealing with doctors and hospitals; spiritual ways of coping, and much more. One of the things I liked best was that she showed that different people often had very different ways of coping with the same problem or feeling, but made no value judgments as to the 'best' way. The book is sprinkled with quotes from people who have 'been there' and makes it clear that there is not just one way of coping, but that each person must find their own way. All the way through I kept running across familiar feelings and problems and new ways of looking at old problems. Her discussion of the way society turns sufferer from chronic illness into heroic figures (the brave person bearing up under hardship) was eye opening. Her question 'What if we don't feel like being heroic? What if we want to complain and be angry about it?' Should we feel we've failed if we give in and express these feelings instead of suffering in silence? After all, were we given a choice about it? The only option besides "living with it" is suicide, a rather drastic solution. We can perhaps appreciate the 'character building' aspects of illness, but still wish it didn't happen! My favourite quote from the book was "Things work out", something to keep in mind as you feel yourself starting to panic under stress! _________________________________________________________________ "Lupus- Living With It: You Don't Have to Be Healthy to Be Happy", Suzy Szasz. (Prometheus Books, 700 East Amherst Street, Buffalo, NY 14215, 1995). ISBN 1573920231 (paperback). Author with lupus discusses living with chronic illness. (The following is a review of the 1991 edition). I loved the title of this book but was disappointed in the book itself. The author was diagnosed with Lupus at thirteen and is on megadoses of Prednisone (up to 160 mg/day!) from then on despite being given other immunosuppresants as well. She is a classic over-achiever, expecting herself to get straight A's right up to getting several masters degrees and a doctorate, and often carrying more than a normal course load, despite her disease. She takes a minimal amount of time off when her disease forces her to, but goes right back to work, sometimes even as she lies in bed. She, like many of us with chronic diseases, sees hospitalization as the ultimate defeat. I kept waiting for her to realize that she needed to slow down and take it easier, but she never does! I wonder how much of her hyperness is due to the prednisone, she seems totally unable to rest or relax. At the time she wrote the book she is 32 and has severe osteoporosis that causes ribs to crack and vertebrae to collapse if she moves too sharply. Her height has dropped from 4'10" to 4'7" and she has to wear a back brace, and has muscle weakness from the steroids. but she is still working as a research librarian and writing books in her spare time. This is a somewhat scary book for those of us on long-term prednisone, a real warning of the price we may pay in the long term. However, her courage in facing her difficulties and pursuing her goals despite them, as well as her frank advice on selecting a doctor and dealing with the medical establishment, gives the book some value. Her father being a doctor and her own research bent, mean she is as knowledgeable if not more knowledgeable about lupus than her doctors, and takes a strong role in determining her own treatment. If nothing else, a close look at living with severe lupus makes IBD seem not so bad! _________________________________________________________________ "Meeting the Challenge: Living with Chronic Illness", Audrey Kron. (Audrey Kron 1996). ISBN 0963387715 (paperback). "Patient Power: Overcoming Chronic Illness", J.M. Galbraith. (Benchmark Books, 1995) ISBN 0942246020 (paperback). "Sick and Tired of Feeling Sick and Tired...Living with Invisible Chronic Illness"- Paul J Donoghue Phd., and Mary E Siegel Phd. (W.W. Norton & Company. Inc., 1994). ISBN 0393311546 (paperback). "Taking Charge: Overcoming the Challenges of Long-Term Illness", Irene Pollin and Susan K. Golant. (Time Books, New York, 1994). ISBN 0812922581 (hardcover). "Taking Charge: How to Master the 8 Most Common Fears of Long-Term Illness", Irene Pollin and Susan K. Golant. (Time Books, New York, 1996). ISBN 0812927001 (paperback). (later edition of first book?) (Review is of first book listed)- This book I did find useful. I often find that the medical establishment is very good at dealing with the physical side of disease, but do little to help you with the emotional and social aspects. This book is especially useful for the newly diagnosed with any chronic illness as it deals extremely well with the various emotions that occur as you come to grips with the diagnosis. It also deals with the fears that are involved (fear of dependency, fear of death, fear of abandonment, etc.) and other issues such as dealing with the handicapped stigma, isolation, telling others about your disease (should you or shouldn't you "come out" at work), etc. It also talks about different coping styles and how a mis-match between you and your relatives-one needing to talk about it, and one unable to-can cause difficulties in your relationships. I was glad to see that it was extremely supportive of support groups, recommending them many times as a way of coping emotionally and practically with the disease. "When Mommy is Sick", Ferne Sherkin-Langer, R.N.. (Concept Books, 1995). Reading Level- Ages 4-8. ISBN 0807588946. (hardcover). _________________________________________________________________ 3.2 What about general medicine books that people with these conditions might find useful? "Prescription for Nutritional Healing-A Practical A-Z Reference to Drug-Free Remedies Using Vitamins, Minerals, Herbs & Food Supplements", James F. Balch, M.D. and Phyllis A. Balch, C.N.C. (Avery Publishing Group, 1996) ISBN 0895297272 (paperback). "Alternative Medicine - The Definitive Guide", Compiled by The Burton Goldberg Group, (Future Medicine Publishing, Inc., Puyallup, Washington 1993). Library of Congress Catalogue # 93-74059. ISBN: 0-9636334-3-0. "Healing with Whole Foods -Oriental Traditions and Modern Nutrition", Paul Pitchford, (North Atlantic Books, Berkeley, California 1996). ISBN 1556432208 (paperback). Further suggestions are welcome in the format above. --------------------------------------------------------------------------- COPYRIGHT NOTICE: Copyright 1994, 1995, 1996, 1997 by Susan Blank. Selected book reviews Copyright 1995 by Sheila Ruffell. All rights reserved. This document, or any derivative works thereof, may not be sold or redistributed for profit in any way without express (not email) written permission of the author. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD_ROM and inclusion in commercially published compilations (e.g. books). You are free to copy this document for personal use, or to make it available for redistribution in its electronic format, provided that: (1) it remains wholly unedited and unmodified, (2) no fee or compensation is charged for copies of or access to this document, and (3) this copyright notice and the following disclaimer remain attached. Disclaimer: ========== This FAQ is provided by the author "as is", and any express or implied warranties, including, but not limited to, the implied warranties of merchantability and fitness for a particular purpose are disclaimed. In absolutely no event shall the author be liable for any direct, indirect, incidental, special, exemplary, consequential or other form of damages (including, but not limited to, procurement of substitute goods or services; loss of use, data, or profits; or business interruption) however caused and on any theory of liability, whether in contract, strict liability, or tort (including negligence or otherwise) arising in any way out of the use or misuse of the information herein contained, even if advised of the possibility of such damage. In other words, this document is in no way intended to be a substitute for medical care; the information contained herein is presented by the author purely for informational purposes only. In no way are any of the materials presented here meant to be a substitute for professional medical care or attention by a qualified practitioner, nor should they be inferred as such. ALWAYS check with your doctor if you have any questions or concerns about your condition, or before starting a new course of treatment or otherwise making any decisions about treatment. ACKNOWLEDGMENTS: I would like to thank the many people who contributed information to this document, with special thanks to those who have selflessly volunteered many hours of work in setting up other repositories of information for the readers of alt.support.crohns-colitis (in alphabetical order): Stuart Anderson, Michael Bloom, Chris Holmes, Bill Robertson and Laura Zurawski. I would also like to thank the people who supported the original proposal to set up an IBD/IBS newsgroup, and Paul Neal, who came up with the idea in the first place.