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Inflammatory Bowel Disease INFO FAQ v4.0


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Archive-name: medicine/crohns-colitis-info-faq
Posting-frequency: every two weeks
Last-modified: 2000/11/29
Version: 4.01

See reader questions & answers on this topic! - Help others by sharing your knowledge
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 smb@panix.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
jdr@io.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  nacc@nacc.org.uk 
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 shillies@bournemth.win-uk.net.

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 101736.2757@compuserve.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:  193.145.195.80/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 iffgd@execpc.com 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: iffgd@execpc.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 128.248.251.136 

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 
ibdlist-request@menno.com.  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:
listserv@sjuvm.stjohns.edu.  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.

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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,
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(including, but not limited to, procurement of substitute goods or 
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In other words, this document is in no way intended to be a substitute
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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.

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Last Update March 27 2014 @ 02:11 PM