From: smb@panix.com
Archive-name: medicine/crohns-colitis-info-faq
Posting-frequency: every two weeks
Last-modified: 1995, 1996/03/14
Version: 1.3
Information Resources for alt.support.crohns-colitis newsgroup
Frequently Asked Questions
Version 1.3
Last revision-3/14/95
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 two other FAQs for this newsgroup - the Inflammatory
Bowel Disease FAQ, which answers tons of questions about Ulcerative
Colitis and Crohn's Disease, and the Irritable Bowel Syndrome FAQ, which
is equally informative about IBS. All three 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 3 FAQs are also
available through the World Wide Web at http://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. Lastly,
discussions of all types of medicine- conventional and alternative,
Western and Eastern, your Aunt Harriet's home remedies, whatever-
are welcome here. 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
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 Austrailia?
1.0.5 What support organizations exist in Germany?
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?
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 other sources of information here on the Internet?
2.2 Is there help on the commercial on-line service Prodigy?
2.3 Is there a support group on the commercial on-line
service Delphi?
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.
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 are mostly a
regional organization at this point, but are thinking of going national in the
near future. 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.
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.
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. This past year it
awarded a grant to Dr. Peter Kwan at the Department of Gastroenterology at
the University of British Columbia to study differences in molecules and
genetic markers in patients with IBD, as compared to those people
without IBD. 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.
For Canadians with Irritable Bowel Syndrome, Jeffrey Roberts runs the IBS
Self Help Group, c/o 220 St. Germain Ave., Toronto Ontario, M5M 1W1.
Contact Jeffrey Roberts at 416-932-0101 or via email at jeff@sco.com or
ay864@freenet.toronto.on.ca.
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,
98A London Road, St. Albans, Herts, AL1 1NX, at 0727-844296 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 contact Micahel Shillabeer,
Dorset NACC-in-Contact, by emailing him at shillies@bournemth.win-uk.net.
Other helpful organizations include the Crohn's in Childhood Research
Association, 356 West Barnes Lane, Kingston-on-Thames, KT3 6NB, and the
Steroid Aid Group, PO Box 220, Walthamstow, London, E17 3JR.
1.0.4 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.
1.0.5 What support organizations exist in Germany?
The German DCCV (Deutsche Crohn und Colitis Vereinigung, i.e. German Crohns
and Colitis Foundation), is located at DCCV e.V., Paracelsusstr. 15,
D - 51375 Leverkusen, Tel: (+49) 214 - 75957.
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.
There is also the Quality Life Association, 112 Grey
Street, Millen, GA 03442, phone 1-912-982-2340; 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.
In England, try the Colostomy Association, 15 Station
Road, Reading, Berkshire RG1 1LG or the Ileostomy Association, Amblehurst
House, Box 23, Mansfield, Notts NG18 4TT.
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.
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.
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.
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 other sources of information here on the Internet?
WWW surfers can now connect to the Crohns Disease/Ulcerative
Colitis/Irritable Bowel Syndrome WWW server by linking to URL
http://qurlyjoe.bu.edu/cduchome.html. All FAQs for
alt.support.crohns-colitis can be found at this location, as well as
other items of interest.
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%shasta@louie.udel.edu. 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.
Alt.support.ostomy is a new newsgroup for all people with ostomies.
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
2.2 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.
Included in the monthly price of a subscription to Prodigy is
5 free hours on this group. Time thereafter is billed at $1.20
an hour. There's also a service run by CCFA called the
CCFA Forum, which at for an additional hourly charge (5 hours a
month free on Prodigy's Value Plan subscription) provides
access to articles about various aspects of IBD, and provides a forum
to ask questions of doctors. Phone 1-800-PRODIGY for information
on how to subscribe.
2.3 Is there a support group on the commercial on-line service Delphi?
There's a very friendly support group on Delphi which is an offshoot of
the one on Prodigy. The forum is Custom 238.
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".
2.5 How about if I want to do some serious research about IBD, IBS or
other illnesses?
Try MEDLINE, Grateful Med, and other on-line datebases provided by
the National Library of Medicine (NLM). MEDLINE is a large database (over 7
million records, back to 1966) maintained by the NLM, containing information
on published articles. The articles themselves are not on-line, but
rather there is a header and where available, an abstract. In addition
to the header, each entry is tagged with standard medical subject
headings (MeSH).
By using the header and the MeSH headings, a user can search the
database for articles of interest. The search criteria can be
quite complex, in order to retrieve only the documents of
interest. In order to simplify the search for people
that are not medical professionals and particularly not medical
librarians, a "front-end" program is available called Grateful Med.
It costs $29 and is available for the PC and the Mac. Using Grateful
Med, you simply fill out a screen with the necessary information, and
then connect to the NLM computer. The search is carried out
and the results retrieved, automatically.
There are also numerous other databases accessible at the NLM, for
example on cancer, aids, toxic chemicals, and many more. You must
register with the NLM to set up an account to use this
service. There are usage charges for time, characters transmitted,
etc. but the average search, they say, costs about $1.75. The NLM
computer can be accessed via the Internet or by a local phone call in
most cases. Support is excellent. An extensive tutorial ("How To") is
included with Grateful Med.
You can also register with a local medical library, so when you find an
article that you would like the full text of, you can flag it usingt the
Loansome Doc feature of Grateful Med, and a request will be sent to the
library to send you a copy. The library will charge you for this service.
Direct inquiries to:
MEDLARS Management Section
National Library of Medicine
Bldg. 38A, Rm. 4N421
Bethesda, Maryland 20894
(800) 638-8480
or via email to mms@nlm.nih.gov
Inquiries about Grateful Med:
gmhelp@gmedserv.nlm.nih.gov
There is a bulletin board that has info on obtaining the Grateful Med
software and the application for an account, as well as other
information. Using your modem, call 800-525-5756 to access the
Grateful Med BBS.
There is a mailing list for Grateful Med users. This list has had
maybe one or two messages in the past year, so it's not what I'd call
ative. But here's the info if you want to sign up. Send a mail
message to listserv@vm1.nodak.edu with the command
SUBSCRIBE GFULMED
and an acknowledgement will be sent with more info about the listserv.
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:
"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) -available from CCFA. ISBN 0-684-17967-9 (hardcover).
"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) -available from CCFA. ISBN
0-88167-532-6 (paperback).
"The New People ...not Patients- A Source Book for Living with
Inflammatory Bowel Disease", edited by Steiner, Banks, and Present
(Kendall/Hunt Publishing) -available from CCFA. ISBD 0-8403-6321-4
(trade paperback).
"The Angry Gut- Coping with Colitis & Crohn's Disease", W. Grant
Thompson, M.D. (Plenum, 1993). ISBN 0-306-44470-4(hardcover).
"Eating Right for a Bad Gut- The Complete Nutritional Guide to
Ileitis, Colitis, Crohn's Disease and Inflammatory Bowel Disease",
Dr. James Scala (NAL Books, 1990). ISBN 0-453-00739-2(hardcover).
"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).
"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.
"Your Gut Feelings - A Complete Guide to Living with Intestinal
Problems", Henry D. Janowitz, M.D. (Oxford University Press, 1987).
ISBN 0-19-504309-X (hardcover), ISBN 0-19-505917-4 (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).
"Food and the Gut Reaction", Elaine Gottschall (The Kirkton Press,
R.R. #1, Kirkton, Ont., N0K 1K0, 1987). An alternative dietary
approach to the treatment of IBD, diverticulitis, and chronic
diarrhea. ISBN 0-9692768-0-X (paperback).
"Gastrointestinal Health - A Self Help Nutritional Program to Prevent,
Cure or Alleviate IBS, Ulcers, Gas, and other Digestive
Diseases", Dr. Steven Peikin. ISBN 006098405-8 (paperback).
"Indigestion- Living Better with Upper Intestinal Problems
from Heartburn to Ulcers and Gallstones", Henry D. Janowitz, M.D.
(Oxford, 1992). ISBN 0-19-506308-2 (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 (Four Walls Eight Windows, P.O. Box 548, Village Station,
NY, NY 10014). ISBN 0-941423-66-2 (paperback). Includes a big chapter on
digestive disorders.
"The Self-help Way to Treat Colitis and other IBS Conditions," De Lamar
Gibbons, M.D., Keats Publishing, New Canaan, CT. 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).
3.1 Are there other useful books out there about coping with chronic
illness?
"Living with Chronic Illness: Days of Patience and Passion"- Cheri Register,
[need more info]
"Taking Charge: Overcoming the Challenges of Long-Term Illness", Irene
Pollin and Susan K. Golant, Time Books, New York, 1994.
Further suggestions are welcome in the format above.
---------------------------------------------------------------------------
COPYRIGHT NOTICE:
Copyright 1994 by Susan Blanc. 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, or consequential 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 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; please discuss anything you're read here with a doctor
before 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, Paul Neal, who came up with the idea in
the first place, and of course Carol S., founder of the Prodigy
Crohn's/Colitis support group and inspiration of the founding of this one.
Last reviewed: By John M. Grohol, Psy.D. on 15 Sep 2002
Copyright © 1992-2009 Psych Central. All rights reserved.
Site last updated: 3 Jul 2009
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