Inflammatory Bowel Disease FAQ V3.0

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Archive-name: medicine/crohns-colitis-faq
Posting-frequency: every two weeks
Last-modified: 1997/3/15
Version: 3.0
URL: http://qurlyjoe.bu.edu/cduchome.html


Inflammatory Bowel Disease
Frequently Asked Questions

Version 3.0
This document was last modified on 3/15/1997

Introduction:
============

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 on-line
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's figured out what causes these
illnesses, no one's come up with a cure, and we need all the help we can
get.

If you have comments, suggestions, or corrections concerning the content
of this FAQ, please contact me via email at kho...@ucla.edu.
Please do not send me email asking for help with your news reader (ask
your system administrator) or to subscribe to a mailing list (I have no
control over the usenet group or the IBDLIST mailing list) or anything
unrelated to the content of this FAQ. Sorry.

Copyright Notice:
================

Copyright 1997 by Kevin Horgan, M.D., Christopher Holmes and Michael
Bloom. All rights reserved. See the end of this document for information
on permission to use, copy and distribute.

Disclaimer:
==========

This FAQ is provided by the authors "as is". See end of document for
complete disclaimer.

Where to get this FAQ:
=====================

This FAQ is posted twice a month to the alt.support.crohns-colitis,
alt.answers, and news.answers newsgroups.

It is also now archived at MIT and is available by anonymous ftp at
rtfm.mit.edu and its mirrors (listed below). The file is,
unfortunately, not found in a consistent place. It can be archived
under the subject line of the post (Inflammatory_Bowel_Disease_FAQ_Vx.x)
or under the archive name (crohn-colits-faq) note the misspelling. Some
sites use UNIX compress so there may be a trailing .Z as well and you'll
need a program to UN-compress it.

Note that there are three other FAQ's, the Information Resources FAQ, the
IBS FAQ and the Collagenous Colitis FAQ The Information Resources FAQ is
also posted to alt.support.crohns-colitis twice a month and describes
informational resources on IBD and IBS available either on the internet or
elsewhere. It includes address and phone numbers of support organizations
such as the Crohn's and Colitis Foundation of America (CCFA) and the
United Ostomy Association (UOA), book titles and reviews, and WWW sites.
The IBS FAQ deals with Irritable Bowel Syndrome, which has symptoms that
can be similar to those of UC or CD. The Collagenous Colitis FAQ
discusses a less typical form of IBD which also shares many of the
symptoms of UC.

For those with World Wide Web access, current versions of all these FAQs
can be found at Bill Robertson's website, URL
http://qurlyjoe.bu.edu/cduchome.html.

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
CCFC Canadian Foundation for Ileitis and Colitis
UOA the United Ostomy Association
NSAID Non-steroidal, anti-inflammatory drug
TPN Total parenteral nutrition
GI Gastro-intestinal, i.e., pertaining to your digestive system

==============================
1.0 Digestive system primer
1.1 Q: What is Inflammatory Bowel Disease (IBD)?
1.1.1 Q: What is ulcerative colitis (UC)?
1.1.2 Q: What is Crohn's disease (CD)?
1.1.3 Q: What is ileitis?
1.1.4 Q: What is Crohn's colitis?
1.1.5 Q: What is ulcerative proctitis?
1.1.6 Q: What is Granulomatous colitis?
1.1.7 Q: What is Irritable Bowel Syndrome?

1.2 Q: What symptoms are experienced by IBD patients?
1.2.1 Q: What are extra-intestinal manifestations of these diseases?
1.2.2 Q: What other complications can occur?
1.2.3 Q: What is toxic megacolon?
1.2.4 Q: What are fistulas and abscesses?
1.2.5 Q: What are strictures?
1.2.6 Q: What is the cancer risk in IBD patients?
1.2.6.1 Q: Are there other factors predisposing to the development of colon
cancer?
1.2.6.2 Q: Are there ways to reduce the risk of developing colon cancer?

1.3 Q: What are the causes of Crohn's disease and ulcerative colitis?
1.4 Q: Could IBD be an inherited condition?
1.5 Q: Who gets these diseases?
1.6 Q: Are there any factors that predispose to the development of UC and/or CD?
1.7 Q: Are there any factors that protect against the development of UC
and/or CD?

1.8 Q: How is ulcerative colitis diagnosed?
1.8.1 Q: What are flexible sigmoidoscopy and colonoscopy?

1.9 Q: How is Crohn's disease diagnosed?

2.1 Q: What Drug therapies are used to treat IBD?
2.1.1 Q: What are 5-ASA Drugs?
2.1.1.1 Q: What is Azulfidine?
2.1.1.2 Q: What is Dipentum?
2.1.1.3 Q: What is Asacol?
2.1.1.4 Q: What is Salofalk?
2.1.1.5 Q: What is Pentasa?
2.1.1.6 Q: What is Balsalazide?
2.1.1.7 Q: What is Rowasa?

2.1.2 What is Metronidazole?
2.1.3 Q: What is Ciprofloxacin?
2.1.4 Q: What is Clarithromycin (Biaxin)?

2.1.5 Q: What are adrenal corticosteroids (steroids), and when and why are
they used?
2.1.5.1 Q: What are the side effects from taking steroids?
2.1.5.2 Q: What is meant by "Alternate Day Therapy"?
2.1.5.3 What is Budesonide?
2.1.5.4 What is ACTH?
2.1.5.5 Q: What do steroids do to bones?
2.1.5.6 Q: What should be done to minimize the damage done by steroids to
bones when I am being treated for IBD?

2.1.6 Q: What are immunosuppressive drugs and when are they used?
2.1.6.1 Q: What are Azathioprine and 6-MP?
2.1.6.2 Q: What is Methotrexate?
2.1.6.3 Q: What is Cyclosporine?

2.2 Q: Are any other drugs used to treat IBD?
2.2.1 Q: Are nicotine patches ever used to treat UC?
2.2.2 Q: What about antibodies against TNF (Tumor Necrosis Factor)?
2.2.2.1 Q: What is Tumor Necrosis Factor or TNF?
2.2.2.2 Q: Does TNF serve any useful function?
2.2.2.3 Q: Is TNF important in IBD? just CD? what about UC?
2.2.2.4 Q: What is this new anti-TNF treatment?
2.2.2.5 Q: How does the anti-TNF treatment work?
2.2.2.6 Q: Are there problems with the treatment?
2.2.2.7 Q: What sort of patients are suitable candidates for treatment with
anti-TNF antibody?
2.2.2.8 Q: What are the alternatives available at present?
2.2.3 Q: What about Interleukin-10 (IL-10) therapy for CD?
2.2.4 Q: What about fish oil for therapy?
2.3 Q: Can different drugs be used together to treat IBD?
2.4 Q: Will I need to keep taking medications permanently?

3.1 Q: Drugs aren't working, what can surgery do for my UC?
3.1.1 Q: What's an ileostomy?
3.1.2 Q: What's a Continent Ileostomy?
3.1.3 Q: What's an Ileoanal Anastomosis, or Ileoanal Pull-Through?
3.2.4 Q: What can go wrong with these surgeries?

3.2 Q: Are there surgical treatments for Crohn's?
3.2.1 Q: What's a resection?
3.2.2 Q: After surgery for CD can anything be done to prevent it recurring
again?

4.1 Q: What role does diet play in IBD?
4.1.1 Q: What is an elemental or astronaut diet?
4.1.2 Q: What is total parenteral nutrition?
4.1.3 Q: What is lactose intolerance?
4.2.3.1Q: So what can I do about lactose intolerance?
4.1.3.1 Q: So what can I do about lactose intolerance?

5.1 Q: What part does stress play in IBD?
5.2 Q: Can anything else cause a flare up?

6.1 Q: How can I make the most of my consultations with my physician?


=============================================================================
1.0 Digestive System Primer

The Digestive System is a complex system of organs responsible for converting
the food we eat into the nutrients which we require to fuel our metabolism.
Here is a guide to the terminology used to describe the various components
of the Digestive System.

The Digestive System in essence consists of a long tube which connects the
mouth to the anus. The term Gastrointestinal (GI) tract refers to the
entire system. Once food leaves your mouth it enters the first part of the
GI tract which is called the esophagus and then the stomach. The food
passes relatively quickly into the stomach where it pauses and is churned
up with acid into very small particles. It then passes into the small
intestine which is about 20 feet long. The main function of the small
intestine is to absorb nutrients from the food particles that arrive from
the stomach. The food is digested with the assistance of secretions from
the liver, gall bladder and pancreas.

The term bowel is synomymous with intestine. The small intestine is
therefore also referred to as small bowel. The small bowel has three parts;
the part nearest the stomach is the duodenum, the next part is the jejunum
and the third part that connects to the large intestine is the ileum. The
last part of the ileum, known as the terminal ileum, is a frequent site of
involvement in Crohn's disease.

The large intestine is more frequently referred to as the colon. The first
part of the colon is called the cecum and the appendix is found there. The
main function of the colon is to absorb water from the processed food
residue that arrives after the nutrients have been absorbed in the small
intestine. The last part of the colon is the rectum which is a reservoir
for feces. Feces are stored here until it is convenient for their expulsion
and the sphincter muscles of the anus then relax.


1.1 Q: What is Inflammatory Bowel Disease?

Inflammatory Bowel Disease (IBD) is an umbrella term referring to two chronic
diseases that cause inflammation of the intestines: ulcerative colitis (UC)
and Crohn's disease (CD). Though UC and CD are different diseases they do
have features in common but there are important distinctions also.
Frequently, the symptoms caused by UC and CD are similar.

Both diseases are chronic and most frequently have their onset in early
adult life. Some patients have alternating periods of relative health
(remission) alternating with periods of disease (relapse or flare), while
other patients have continuous symptoms from continued inflammation.
Fortunately, as treatment has improved the proportion of people with
continued symptoms appears to have diminished significantly .

The severity of the diseases varies widely between individuals. Some suffer
only mild symptoms, but others have severe and disabling symptoms. Some
have a gradual onset of symptoms, some develop them suddenly. About half of
patients have mild symptoms, the other half suffer frequent flare-ups.
Medical science has not yet discovered a cause or cure, but numerous
medications are now available to control symptoms with many more on the
horizon.

1.1.1 Q: What is ulcerative colitis?

Ulcerative colitis (UC) is an inflammatory disease of the large intestine,
commonly called the colon. UC causes inflammation and ulceration of the
inner lining of the colon and rectum. This inner lining is called the
mucosa. Crohn's disease (CD) causes inflammation that extends into the
deeper layers of the intestinal wall.

The inflammation of UC is usually most severe in the rectal area with
severity diminishing (at a rate that varies from patient to patient) toward
the cecum, where the large and small intestine join. Significant deviations
from this pattern may be a clue to the physician to suspect CD rather than
UC. Such deviations may include either "skip areas" and/or "sparing of the
rectum". Skip areas are patches of healthy tissue separating segments of
diseased tissue. They are often seen in CD, but rarely in UC. Inflammation
of the rectum is called proctitis. Inflammation of the sigmoid colon
(located just above the rectum) is called sigmoiditis. Inflammation
involving the entire colon is termed pan-colitis.

The inflammation causes the colon to empty frequently resulting in
diarrhea. As the lining of the colon is destroyed ulcers form releasing
mucus, pus and blood.

UC is relatively common in the western world and at least 250,000 in the
United States alone have the disease. It occurs most frequently in people
ages 15 to 30 although children and older people occasionally develop the
disease.

About 50% of patients are free of symptoms at any given time but the vast
majority suffer at least one relapse in any 10 year period.

Drug treatment is effective for about 70-80% of patients; surgery becomes
necessary in the remaining 20-30%.

1.1.2 Q: What is Crohn's disease?

Crohn's disease (CD) is an inflammatory process that can affect any
portion of the digestive tract, but is most commonly seen (roughly half of
all cases) in the last part of the small intestine otherwise called the
terminal ileum and cecum. Altogether this area is also known as the
ileocecal region. Other cases may affect one or more of: the colon only,
the small bowel only (duodenum, jejunum and/or ileum), the anus, stomach
or esophagus. In contrast with UC, CD usually doesn't affect the rectum,
but frequently affects the anus instead.

1.1.3 Q: What is ileitis?

This is CD of the ileum which is the third part of the small intestine. At
one time, CD was thought to affect only the ileum, and for this reason the
name "ileitis" was at one time synonymous with CD but now simply refers to
CD of the ileum.

1.1.4 Q: What is Crohn's colitis?

This is CD affecting part or all of the colon. This form comprises about
20% of all cases of CD. Various patterns are seen. In about half of these
cases CD lesions may be seen throughout one continuous subsegment of the
colon. In another quarter, skip areas are seen between multiple diseased
areas. In the remaining quarter, the entire colon is involved, with no
skip areas.

Unlike UC, in which inflammation is usually confined to the inner mucosal
surface, CD typically involves all layers of the affected tissues.

1.1.5 Q: What is ulcerative proctitis?

Ulcerative proctitis is a form of UC that affects only the rectum.

1.1.6 Q: What is Granulomatous colitis?

This is another name for Crohn's disease that affects the colon.

1.1.7 Q: What is Irritable Bowel Syndrome?

This is *NOT* a variant of UC and Crohn's. UC and Crohn's disease are
defined by the presence of inflammation in the intestine. There is no
inflammation in the intestine in Irritable Bowel Syndrome. Irritable Bowel
Syndrome (IBS) is also known as Functional Bowel Syndrome (FBS),
Functional Bowel Disease (FBD) or spastic colon . Older terms for IBS are
spastic or mucous colitis or even simply "colitis". These terms are no
longer used because they cause people to confuse IBS with UC.

IBS is characterized by a variety of symptom patterns which include diarrhea,
constipation, alternating diarrhea/constipation and abdominal pain. Fever
and/or bleeding are NOT features of IBS.

IBS is much more common than CD or UC and many people with symptoms of IBS
do not seek medical attention. Some patients with Crohns or UC can also
have concurrent IBS.

1.2 Q: What symptoms are experienced by IBD patients?

The most common symptom of both UC and CD is diarrhea, sometimes severe,
that may require frequent visits to a toilet (in some cases up to 20 or
more times a day). Abdominal cramps are often present, the severity of
which may be correlated with the degree of diarrhea present. Blood may
also appear in the stools, especially with UC.

Fever, fatigue, and loss of appetite may accompany these symptoms (with
consequent weight loss).

At times, some UC and CD patients experience constipation during periods of
active disease. In CD this can result from a partial obstruction usually of
the small intestine. In UC constipation is most often a consequence of
inflammation of the rectum (also known as proctitis); the colon has a
nervous reaction and stasis of stool occurs upstream .

Inflammation can affect gut nerves in such a way as to make the patient
feel that there is stool present ready to be evacuated when there actually
is not. That results in the symptom known as tenesmus where there is an
uncomfortable urge to defecate but nothing comes out. The feeling of
urgency to pass stool is a frequent consequence of proctitis also.
Inability to retain stool is an extreme manifestation of urgency. It is
important to bring these symptoms to the attention of your physician
because they may improve dramatically with appropriate local therapy.

Pain usually results from intestinal cramping or inflammation causing
reflex irritability of the nerves and muscles that control intestinal
contractions. Pain may also indicate the presence of severe inflammation or
the development of a complication such as an abscess or a perforation of
the intestinal wall. Generally, new onset pain or a significant change in
the character of pain should be brought to the attention of your physician.
The pain of CD is often in the lower right area of the abdomen. This is
where the terminal ileum is located and pain there usually indicates
inflammation of the terminal ileum.

Location and intensity of abdominal pain vary from patient to patient,
depending upon the location and type of disease in the affected tissues.
Because of a phenomenon known as "referred pain", the location where pain
is produced may not be the same as the location where it is experienced.

1.2.1 Q: What are extra-intestinal manifestations of these diseases?

These are symptoms of IBD that occur outside of the digestive tract.

Many IBD patients experience a wide variety of extra-intestinal
manifestations of their disease. The most common is joint pain due to
inflammation of the joints (arthritis). Others include various types of
eye inflammation (iritis, conjunctivitis and episcleritis), skin
inflammation (erythema nodosum and pyoderma gangrenosum) liver
inflammation (hepatitis and sclerosing cholangitis). Other diseases and
complications may be associated with IBD but less frequently.

At present there is no satisfactory explanation for the occurence of these
extra-intestinal complications of IBD. Some researchers consider them to
be secondary to the primary disease, while others see both the
extra-intestinal manifestations *and* the primary disease as symptoms of a
"systemic" condition. Resolution of this will depend on clarification of
the cause of IBD.

1.2.2 Q: What other complications can occur?

Fatigue is the most common complication. Fever usually indicates active
disease and/or a complication such as an abscess. Severe diarrhea, blood
loss or infection can lead to rapid heartbeat and a drop in blood pressure.
Continued loss of small amounts of blood in the stool (which may not be
visible) may lead to anemia (reduced blood count); this may result in
fatigue.

CD frequently results in the development of fistulas which are abnormal
connections between loops of intestine. These may even involve other organs
such as the urinary bladder or open onto the skin. CD inflammation also
frequently results in the formation of scar tissue with narrowed segments
known as strictures. These strictures frequently cause bowel obstructions
the symptoms of which will depend on the severity. The presence
of a significant stricture is a common reason for surgery in CD.

Hemorrhoid-like skin tags and anal fissures may also develop.

Growth may be retarded in children with both forms of IBD and/or there may
be a delay in the onset of puberty.

1.2.3 Q: What is toxic megacolon?

Toxic megacolon is a severe dilation of the colon which occurs when
inflammation spreads from the mucosa through the remaining layers of the
colon. It is much more commonly a complication of UC though it can be seen
occasionally in CD. The colon becomes paralyzed which can lead to it
eventually bursting; this is known as a "perforation". Such
perforation is a dire medical emergency with a 30% mortality rate. Many
patients with toxic megacolon require surgery.

Anyone with UC or CD serious enough to be at risk for toxic megacolon
should be hospitalized and closely monitored. Warning signs include
abdominal pain/tenderness, abdominal distention, fever, large numbers of
stools with obvious blood and a rapid (more than 100/minute) pulse rate.

Fortunately, this grave complication appears to be decreasing in frequency
which probably reflects more effective treatment.

Use of certain drugs (opiates, opioids and/or antispasmodics) may
predispose to this complication. This is one of the reasons that these
drugs should be used very carefully in both UC and CD.

1.2.4 Q: What are fistulas and abscesses?

Fistulas are hollow tracts running from a part of one organ (such as the
colon) to other organs, adjacent loops of bowel, and or the skin. They
occur in CD as a result of deep ulceration.

Fistulas between loops of bowel can interfere with nutrient absorption.
This is especially true for fistulas between the small and large bowel.

Fistulas can also become infected forming abscesses. Abscesses are
collections of pus that may be accompanied by significant pain, and which
can become life threatening emergencies. Simple treatment of abscesses
resulting from fistulas can sometimes be accomplished via a procedure
called "incision and drainage" (I/D), in which an incision is made,
through which the abscess is drained. However this procedure does not deal
with the underlying fistula which gave rise to the problem. Accordingly,
a more elaborate procedure, known as a fistulectomy, is usually necessary
for more definitive treatment.

Fistulas are relatively common in CD patients and are very rare in patients
with UC.

1.2.5 Q: What are strictures?

Patients with CD in the small intestine may develop bowel obstructions
which can result in severe cramps and vomiting. These obstructions can
result from narrowing of the intestine due to inflammation as well as from
scar tissue (stricture) from healed lesions. If the obstruction is a
consequence of inflammation then it can usually be relieved by medical
therapy such as steroids. However if the obstruction is due to a fibrous
stricture then surgical resection may be necessary. In others, it may be
possible to clear some of these obstructions via a technique known as
stricturoplasty, which attempts to expand the narrowed segment of the
intestine.

Strictures can also occur in the large intestine, but are much less common.

1.2.6 Q: What is the cancer risk in IBD patients?

For patients who have had UC longer than ten years, the risk of colon
cancer is greater than that for comparable people without UC. There is data
that suggests a risk of 5-10% at that point increasing to a range between
15 and 40% after 30 years, depending upon the particular study one looks
at. If only the rectum and lower (sigmoid) colon are involved, the risk of
cancer is not significantly increased. Patients that exhibit dysplasia
(pre-cancerous changes in cells that can be detected by a biopsy) are at
much higher risk.

There is some data suggesting that the risk of colon cancer in patients
with colonic CD is similar to that of UC patients with disease of similar
extent.

Other cancers, such as lymphoma or carcinoma of the small intestine or
anus, may be slightly more common in Crohn's disease but the risk is not
high.

In the presence of longstanding (> 7-8 years) UC which involves more than
the rectum and sigmoid colon or extensive Crohn's colitis then the
consensus of informed medical opinion is that the patient should have a
regular (yearly or every second year) screening colonoscopy to look for
evidence of dysplasia. If that is found then the safest option is for a
colectomy to be performed. This strategy does not guarantee that cancer
can be avoided but seems to significantly increase the probability that it
is not life threatening if and when it is detected.

1.2.6.1 Q: Are there other factors predisposing to the development of colon
cancer?

Patients who have both UC and sclerosing cholangitis may be at even greater
risk of developing colon cancer. Accordingly screening should be done with
particular vigilance in these patients.

There is also some data suggesting that low folic acid levels may
predispose to the development of colon cancer in UC patients.

1.2.6.2 Q: Are there ways to reduce the risk of developing colon cancer?

The only certain way is to have a colectomy: in other words to have the
colon removed surgically.

However, there is circumstantial evidence that taking 5-ASA drugs drugs
such as azulfidine [See Section 2.1.1] might reduce the risk of colon cancer
also.

Also there is some data that eating a diet rich in fruit and vegetables
(five servings a day) and low in red meat is associated with a reduced risk
of colon cancer in people without colitis. Regular exercise also seems to
be associated with a reduced risk of colon cancer. These associations may
also be true for UC and CD patients but they have not been studied.

1.3 Q: What are the causes of Crohn's disease and ulcerative colitis?

The answer, unfortunately, is that no cause is yet known.

1.4 Q: Could IBD be an inherited condition?

Many researchers believe these diseases may be result of an "inherited
predisposition" combined with a triggering environmental agent (possibly a
bacteria or a virus). There is no simple, predictable pattern of
inheritance though there is certainly some evidence to suggest that
heredity has some role to play. For example, when two immediate family
members both have IBD, the most common combination is mother-child,
followed by sibling-sibling, with father-child being least common. About
15 to 20% of people with IBD have immediate family members with IBD.

Heredity factors seem to be more important in CD than UC.

1.5 Q: Who gets these diseases?

Up to 2,000,000 Americans are estimated to suffer from IBD with males and
females affected equally.

The diseases can appear at any age, but the age at which patients are
usually first diagnosed falls neatly onto a bell curve centered at about
24 years old, falling off quickly in the late teens and early thirties.
However, there are also a significant number of patients in whom the
diseases first occur in later life.

There are significantly more cases in western Europe and North America
than in other parts of the world.

1.6 Q: Are there any factors that predispose to the development of UC
and/or CD?

Smoking appears to enhance the likelihood of developing CD.

1.7 Q: Are there any factors that protect against the development of UC
and/or CD?

Smoking appears to protect against the development of UC.

There is data that surprisingly few UC patients have had their appendix
removed (appendectomy). This suggests that removal of the appendix may
protect against the subsequent development of UC. There is no apparent
relationship between appendectomy and CD.

1.8 Q: How is ulcerative colitis diagnosed?

Diagnosis is made based on symptoms and the exclusion of other diseases by
observation of typical findings at endoscopy and failure to find evidence
of infection. The presence of often bloody diarrhea will prompt your
doctor to perform an endoscopic examination; either a sigmoidoscopy and/or
colonoscopy (described below). If inflammation is seen by these
techniques, the physician will then attempt to rule out an infectious
cause with stool cultures and blood tests.

Usually it is possible to tell the difference between CD and UC but not
always. Particularly, there may be some uncertainty between a diagnosis
of UC and CD affecting the colon; this is termed indeterminate colitis.
Occasionally a diagnosis of UC will eventually turn out to be CD.

1.8.1 Q: What are flexible sigmoidoscopy and colonoscopy?

Flexible sigmoidoscopy and colonoscopy are endoscopic procedures that
allow doctors to examine the lining of the large intestine. In both
procedures, the physician inserts a flexible tube known generically as an
endoscope through the anus. The doctor is able to move this tube through
the gut to view the mucosal lining of the intestines. This also enables
him to take tiny samples of the lining using a forceps passed through the
endoscope. These samples (called biopsies) can then be viewed under a
microscope by a pathologist. Examination of these biopsies by a
pathologist is particularly helpful in making the distinction between CD
and UC and also for detecting the early evidence of cancerous change
indicated by dysplasia.

Flexible sigmoidoscopy is an endoscopic procedure done without sedation
which examines the rectum, sigmoid colon and often a little bit more of the
colon reaching as far as the splenic flexure (the bend at which point the
descending colon and transverse colon meet).

Colonoscopy is a more elaborate procedure that is used to examine the
entire length of the colon which is usually done with sedation.

>From the patient's perspective, the main difference between the two
procedures is that flexible sigmoidoscopy may be performed in the doctors
office and does not normally reach farther than the splenic flexure.
Biopsies, or tissue samples may be taken during either procedure.

1.9 Q: How is Crohn's disease diagnosed?

Diagnosis of Crohn's disease of the colon is similar to diagnosis of
ulcerative colitis. The differences between the two are found by studying
the nature and location of the specific inflammation.

Colonic CD has larger, deeper, thicker ulcers than UC (which instead has
an even "micro-carpet" of tiny ulcers on the surface lining of the inner
mucosa). In CD, areas of ulceration are often separated by skip areas, a
phenomenon not seen in UC. There is a marked contrast between the
"cobblestone" appearance often seen with CD and the even "micro-carpet"
seen with UC. Sometimes, "granulomas", a microscopic indicator of CD may
be seen on biopsy samples.

A diagnosis of probable small bowel CD is frequently made by clinical
observations of small bowel Crohn's symptoms accompanied by the detection
on physical examination of a palpable mass (which may be tender) in the
right lower part of the abdomen. To confirm the diagnosis an upper GI
barium x-ray with small bowel follow through is generally performed. In
small bowel follow through the small bowel is radiographed as barium
passes through it producing silhouette images of the lining. The barium can
be introduced either by swallowing, or via a "small-bowel enema" (in which
the barium is pumped to the small bowel through a tube). The former
method, while more comfortable for the patient and much more commonly used,
produces inferior results because the barium is diluted by gastric juices.
The latter method is generally used in more perplexing cases. A small bowel
enema is also know as an "enteroclysis."

2.1 Q: What Drug therapies are used in IBD?

Lots. The two most widely used drug families are steroids and
5-aminosalicylic acid (5-ASA) drugs , both of which reduce inflammation of
the affected parts of the intestines.

Immunosuppressive drugs such as 6-mercaptopurine (Purinethol) are being
increasingly used for long-term treatment of IBD. They are particularly
useful in the setting of a patient who is dependent on chronic high-dose
steroid therapy with its severe and
predictable side effects.

2.1.1 Q: What are 5-ASA Drugs?

5-aminosalicylic acid (5-ASA), also called mesalamine, is an
anti-inflammatory drug used in treating IBD. 5-ASA has a similar chemical
structure to aspirin, but has a 5-amino group in place of aspirin's acetyl
group (aspirin is acetylsalicylic acid).

Pure unmodified 5-ASA is easily absorbed in the upper GI tract. To enable
its delivery to the lower GI tract where it is needed it must be chemically
modified or packaged. Different 5-ASA drugs are formulated to allow
delivery to different locations.

Because of the chemical similarities to aspirin, patients allergic to
aspirin should not take 5-ASA drugs.

2.1.1.1 Q: What is Azulfidine?

Sulfasalazine (Azulfidine, Azulfidine EN-Tabs in the US; Salazopyrin
EN-Tabs, SAS in Canada; salazosulfapyridine, salicylazosulfapyridine):

This is the "staple" drug generally first prescribed for IBD patients. It
is taken by mouth and is intended to first reduce inflammation of the
intestinal lining and then to maintain remission in mild to moderate cases.

Sulfasalazine is a combination of sulfapyridine and an aspirin-like
compound, 5-aminosalicylic acid (5-ASA). The bond between the two is
broken by intestinal bacteria, making the 5-ASA available in the terminal
ileum and colon. A significant amount of the sulfapyridine component is
absorbed, metabolized by the liver, and excreted in urine. Side effects
are experienced by some patients and can include nausea, heartburn,
headache, dizziness, anemia, and skin rashes. It is also known to cause a
reduced sperm count in men, but only for the duration of treatment. It may
also turn urine a bright orange-yellow color. The side effects generally
result from the sulfapyridine component. Hence the efforts to develop
formulations of 5-ASA which do not contain sulfapyridine or other
sulfa drugs.

Azulfidine was developed in the 1930's for the treatment of rheumatoid
arthritis. During clinical trials in the 1940's, arthritis patients who
also suffered from IBD reported improvements in their IBD symptoms while
taking it. This led to its current use as the mainstay IBD treatment.

For active disease initially, 1 gram every 6-8 hours is taken by mouth.
Adverse effects may be lessened by reducing the dosage to 500 mg every
6-12 hours. Maintenance dose is usually 500 mg every 6 hours, adjusted to
patient response and tolerance. Total doses of more than 4 g/day may
increase the risk of adverse effects and toxicity but some patients may
benefit from taking up to 6 g/day. Azulfadine is generally taken with a
full glass of water after meals or with food to minimize indigestion.

When indigestion is a problem enteric-coated tablets may be used which are
frequently better tolerated.

2.1.1.2 Q: What is Dipentum?

Olsalazine Sodium (Dipentum)

Olsalazine is a drug that uses a different mechanism to deliver 5-ASA to
the terminal ileum and colon. Whereas sulfasalazine links a 5-ASA molecule
with a sulfapyridine molecule, olsalazine links two 5-ASA molecules. This
compound passes through the stomach and upper ileum. It is then broken
down by intestinal bacteria in the terminal ileum, making 5-ASA available
there and also in the colon.

The major side effect is watery diarrhea, seen in many patients. Patients
with UC or CD affecting the entire colon seem especially susceptible.
Increased cramping and audible bowel sounds are also commonly reported.

The usual dose of olsalazine is 500 mg by mouth twice a day.

2.1.1.3 Q: What is Asacol?

Mesalamine, USA; Mesalazine, Europe :

Asacol is essentially "Azulfidine without the sulfa". The Asacol
formulation of 5-ASA places 5-ASA in an acrylic resin coating which
dissolves at pH greater than 7. The tablets are then able to pass through
the stomach and upper ileum before the coating is dissolved, releasing the
drug in the terminal ileum and colon where the pH is typically greater
than 7.

Asacol is generally well tolerated. The recommended dose is 2.4 g a day
though patients frequently seem to tolerate and benefit from taking up to
4.8 g daily.

2.1.1.4 Q: What is Salofalk?

Mesalazine, Europe (Salofalk)

Similar to Asacol, but dissolves at pH greater than 6.

2.1.1.5 Q: What is Pentasa?

Mesalamine, USA; Mesalazine, Europe (Pentasa) :

Yet another "Azulfidine without the sulfa" formulation, this drug packages
5-ASA in a time-release capsule. This method of delivery is thought to
make the drug available throughout most of the intestines and provide
better release in the small intestine than the other 5-ASA drugs. For this
reason Pentasa is the 5-ASA preparation of choice for Crohn's disease
involving the small intestine.

Pentasa is generally well tolerated. The recommended dose is 2g a day
though patients frequently seem to tolerate and benefit from taking up to
4g daily. There is data that the higher dose may be more effective.

2.1.1.6 Q: What is Balsalazide?

Balsalazide:

Another 5-ASA drug that uses a variant on sulfasalazine's delivery
mechanism, Balsalazide contains 5-ASA joined to an inert vehicle. This
combination passes through the stomach and upper ileum. It is then broken
down by intestinal bacteria in the terminal ileum, making 5-ASA available
in the terminal ileum and colon.

2.1.1.7 Q: What is Rowasa?

Mesalamine (Rowasa) :

Rowasa is 5-ASA in enema form and is effective in treating distal UC, which
is simply UC affecting the lower part of the colon, near the rectum, and
the rectum itself. One enema contains 4 g of 5-ASA.

Rowasa also comes in suppository form for treating proctitis (rectal
inflammation). Each suppository contains 500 mg of 5-ASA.

2.1.2 Q: What is Metronidazole?

Metronidazole (Flagyl) :

Metronidazole is an antibiotic that is most frequently used for treating
vaginal infections. However, there is some evidence (much of it anecdotal
rather than derived from formal studies) that it is useful in treating CD.
Some studies have shown that it has an anti-inflammatory action on CD that
is at least as effective as sulfasalazine. The mechanism of this action is
unknown, and it has not been found in other antibiotics having the same
antibiotic spectrum. Metronidazole appears to be particularly effective in the
treatment of CD in the colon. The dose is generally 250 mg three times a day.
Some patients are unable to tolerate alcohol while taking metronidazole;
accordingly it is generally recommended that patients avoid alcohol while
taking it.

Though it has been shown to cause cancer in laboratory rodents exposed to
very high doses (much, much higher than used in humans) there is NO
evidence that it has any similar effect in humans.

The major side effect of metronidazole is irritation of nerves which can
result in permanent nerve damage if the medication is not promptly stopped.
The first hint of this problem is usually a sensation of "pins and needles"
in the finger tips and toes. If this is noted the medication should be
stopped immediately.

Current issues of the PDR contain the disclaimer "Crohn's disease is not an
approved indication for metronidazole".

2.1.3 Q: What is Ciprofloxacin?

Ciprofloxacin ("Cipro") is another antibiotic frequently used in the
treatment of CD. Many physicians and patients report positive results from
a trial of cipro, although the formal evidence to justify its use is
limited. An infrequent side effect of prolonged use is the development of
inflammation of tendons (tendonitis) which may result in rupture especially
of the achilles tendon.


2.1.4 Q: What is Clarithromycin (Biaxin)?

Another antibiotic used in the treatment of CD. As with the others there is
currently little formal evidence to justify its use.

2.1.5 Q: What are adrenal corticosteroids (steroids), and when and why are
they used?

Prednisone, Prednisolone, Hydrocortisone:

When 5-ASA drugs fail or when symptoms are more severe, the next
therapeutic step usually involves steroids which are very powerful
anti-inflammatory drugs. These are available in oral, enema, or
suppository forms. The topical forms are useful in treating distal colitis,
the oral forms are useful for achieving remission in mild to moderate
active UC and CD. They are NOT useful for continued use in order to
maintain a remission. The oral forms can, however, be effective in
suppressing active CD to the point where it appears to be in remission.

2.1.5.1 Q: What are the side effects from taking steroids?

Side effects from steroids vary widely between patients, but are generally
pretty severe particularly when used at moderate to high doses (> 15mg
prednisone daily). Common side effects include rounding of the face (moon
face) and increase in the size of fat pads on the upper back and back of
the neck (buffalo hump), acne, increased appetite with consequent weight
gain, increased body hair, osteoporosis (especially in women),
compression fractures in vertebrae, diabetes, hypertension, cataracts,
increased susceptibility to infections, glaucoma, weakness of arm, leg,
shoulder, and pelvic muscles, personality changes including depression
(suicidal tendencies are not uncommon), irritability, nervousness, and
insomnia. Children's growth may also be affected, even by small doses.

An important and serious complication of steroid therapy is avascular
necrosis of the hip. This results in death of the bone in the hip joint
resulting in arthritis and severe pain. Fortunately, it is a rare
complication.

Side effects are not as severe with the topical forms in the short term,
but increase to about the level of the oral drugs with long term use.

Some people report inconsistent response to treatment with Prednisone,
saying they respond better at some times to a particular treatment course
than they do at others.

Corticosteroids suppress the activity of the adrenal glands, which must be
restored gradually when the drug is discontinued. This requires gradual
tapering of the steroid. Most physicians will not taper long term steroid
users faster than roughly 1mg per week or 5 mg per month. For short term
users, dosage may be lowered at a faster rate, such as 5 to 10 mg per
week.

Withdrawal symptoms can occur when the dosage is lowered too quickly.
These may include fever, malaise, and joint pains. Since these can also be
symptoms of IBD, it is often difficult to tell whether they are the result
of insufficient steroid levels, or a true relapse of IBD.

If IBD symptoms begin to return during tapering, standard procedure is to
return to a slightly higher dose, which is maintained until symptoms
subside. Tapering may then be resumed at a slower rate.

Long term use of steroids (more than a few days) suppresses the adrenal
gland's normal production of steroids and can affect its function for a
long time (up to a year, or in some cases even two) even after steroid use
has stopped. During this period, the body may not be able to produce an
adequate supply of steroids during extreme stress, such as surgery or
severe infection.

If you've been taking steroids for a while you should probably wear a
MEDIC-ALERT necklace or bracelet indicating the quantity and duration of
steroid use. (Some suggest carrying a note in the wallet, but such a note
will likely never be seen because standard operating procedure for
emergency medical personnel is to avoid any contact with a patient's
valuables for liability reasons). If you require emergency surgery, this
information can be of vital importance since you'll need to be administered
additional steroids. Your body isn't capable of producing enough steroids
on its own to help survive the stress.

Because of the potential problems it is very important that steroid therapy
is closely supervised by a physician.

2.1.5.2 Q: What is meant by "Alternate Day Therapy"?

Increasing the period of time between steroid doses can allow the adrenal
glands to recover somewhat. Alternate day therapy is simply taking double
the daily dose on every other day. Due to the duration of the effects of
steroids such as Prednisone, this can have the same therapeutic results
with fewer side effects.

2.1.5.3 Q: What is Budesonide?

Budesonide is currently in "beta testing". It is a steroid that is
processed by the liver so that there are less severe side effects. Oral and
enema forms are available, depending upon the location of the disease to be
treated. Its role compared to the more established steroid agents has yet
to be defined. The impression of many is that though it may be safer it may
also be less effective.

2.1.5.4 Q: What is ACTH?

Adreno-cortico-tropic hormone is a drug that stimulates the adrenal gland
to release cortisone. It is seldom used any more.

2.1.5.5 Q: What do steroids do to bones?

Steroid drugs unfortunately can cause osteoporosis. Osteoporosis is a
disease which results in the destruction of bones causing them to become
weak and much more likely to fracture. Without protection within the first
six months of steroid therapy a person can lose 10 percent to 20 percent
of bone mass. As many as one in four of these people may eventually suffer
a fracture as a result. Unlike osteoporosis associated with aging,
steroid-induced osteoporosis can occur at any age, even in children. For
many years it was thought that only high (>20mgs a day) doses of steroids
were a problem, more recent studies have shown that chronic use of low
oral doses -- as little as 7.5 milligrams a day -- can cause significant
though gradual bone loss.


Steroids reduce the amount of calcium the body absorbs from food and
increase calcium loss through the kidneys. These actions result in a
tendency for the level of calcium in the blood to fall. To prevent this
happening the body responds by producing increased amounts of parathyroid
hormone. Parathyroid hormone is released to remove calcium from storage in
the bone and restore a normal level. In addition steroids also cause bone
breakdown directly.

2.1.5.6 Q: What should be done to minimize the damage done by steroids to
bones when I am being treated for IBD?

The best strategy is to avoid the problem entirely by using the lowest
effective dose of steroid. Also to use topical steroids if possible instead
of systemic steroids by mouth.

Recently the American College of Rheumatology recommended that either
before or at the very start of steroid therapy, patients should ideally be
given a bone density test, especially of the lower spine and the neck of
the thigh bone near where it meets the pelvis. This test should be repeated
every six to 12 months to monitor the effectiveness of preventive measures
and, if necessary, to modify the course of treatment.

Everyone who must take corticosteroids should consume at least 1,500
milligrams of calcium and 800 international units of vitamin D a day,
either through diet or supplements. Vitamin D is needed to enhance the
body's ability to absorb calcium and use it to build bone.

Patients on steroids should get regular weight-bearing exercise,
preferably for 30 to 60 minutes a day as this can help prevent bone loss.
They should should not smoke or drink more than moderate amounts of
alcohol as these are associated with increased rates of bone loss.

Consideration should be given to hormone replacement therapy in woman who
are post menopause. Women who have not yet reached menopause whose periods
become irregular or stop while on steroids should take oral contraceptives
unless there is a medical reason for not taking them. For men on steroids
consideration should be given to measuring their testosterone level and, if
found to be low, given testosterone replacement.


2.1.6 Q: What are immunosuppressive drugs and when are they used?

Immunosuppressives such as 6-mercaptopurine (6-MP or purinethol) or
azathioprine (imuran) are increasingly used in treating more severe IBD
that does not respond to 5-ASA therapy and short term steroid therapy. The
most frequent use of these drugs is in the context of inability to reduce
the steroid dosages in steroid dependent patients without causing a disease
flare. Physicians without significant experience in their use can be
reluctant to try them because they rarely can have extreme side effects.
Generally these side effects occur at higher doses than are used in the
treatment of IBD. However, the emphatic opinion of most physician experts
in the management of IBD is that they are significantly safer and more
effective than long term use of high dose steroids. The side effects that
occur in a small minority of the patients who take them can include various
blood problems, bone marrow suppression, extensive immune suppression,
kidney damage, liver damage and others. There is no convincing evidence
that they predispose to the development of cancer at the doses used in
treating IBD patients. Usage of these drugs requires frequent monitoring by
blood tests; ideally a complete blood count should
be obtained every 3 months.


2.1.6.1 Q: What are Azathioprine and 6-MP?

Azathioprine (Imuran)
6-Mercaptopurine (6-MP, Purinethol ) :

Azathioprine is a drug that was originally used to prevent rejection in
organ transplant patients. 6-MP is one of the metabolites of Azathioprine;
that means that Azathioprine is converted into 6-MP in the body.

Both drugs have shown some degree of efficacy when used in combination with
prednisone. Because they facilitate the use of lower steroid doses they are
frequently called "steroid sparing" drugs. Most people can tolerate these
drugs without difficulty thus helping avoid long term high dose steroids
and the predictable associated side effects. At this time it is the
consensus of experts in the management of IBD that it is clearly preferable
to treat a patient with long term Azathioprine or 6-MP rather than with
continued or even intermittent high dose steroids.

Despite impressive data from clinical trials supporting the use of 6-MP and
azathioprine in both CD and UC many patients are still treated with
prednisone for longer periods than are appropriate because of the erroneous
perception that Azathioprine and 6-MP are more hazardous.

This perception is derived in part from the side effect profile seen when
these drugs were originally used in preventing transplant rejection and
also in the treatment of leukemia. The important difference is that
significantly higher doses were used in these situations than are now used
in the treatment of both CD and UC. These drugs were developed in the 1950s
and were first used for the treatment of IBD 30 years ago! Obviously a lot
has been learned about how to use them to maximum advantage over the
intervening years.

The minimum time to respond to the drug is about three months and can be as
long as 12 months. These drugs are effective in maintaining remission in 60
- 80% of patients.

An important side effect that occurs in 3-5% of patients is pancreatitis.
This usually occurs within a few weeks of starting treatment and is
manifested by upper abdominal pain which may radiate to the back and be
associated with nausea and vomiting. If pancreatitis occurs then the
patient cannot take either Azathioprine or 6-MP in the future.

Because of occasional problems with a reduced white blood cell count it is
recommended that patients have complete blood counts on a regular basis;
every three months is recommended though they should be more frequent
during the first few months of therapy.

The issue of how long these drugs can safely be used for has not been
definitively resolved. An increasing number of patients have been
maintained on these drugs for several years (> 3) without any significant
long term side effects noted.

2.1.6.2 Q: What is Methotrexate?

Methotrexate (Folex, Mexate in the US) :

Like the other immunosuppressants, methotrexate may have some benefit in
treating active Crohn's disease. Methotrexate has not been used as
extensively as Azathioprine or 6-MP but there is increasing data that it
may be useful. Methotrexate may be a useful option in patients who are
intolerant of Azathioprine or 6-MP. Because of the occurence of liver
disease in patients taking methotrexate over a sustained period careful
monitoring of liver function is necessary. Patients should not drink
alcohol while taking methotrexate.

Methotrexate should not be used in pregnancy. Patients taking methotrexate
should not get pregnant.

2.1.6.3 Q: What is Cyclosporine?

Cyclosporine is another immunosuppressant drug that was originally and is
still used extensively for preventing rejection of organ transplants such
as kidney and liver transplants.

Though initial hopes were high that it would be a very good drug for severe
and complicated CD the results have been somewhat disappointing.

In severe CD particularly complicated by fistulas there is data that high
dose intravenous cyclosporine may be useful in the short term. Low dose
therapy for maintenance of remission does not seem to be effective and has
unacceptable side effects.

In severe UC, particularly when a patient is on the threshold of requiring
urgent surgery there has been some success with cyclosporine in inducing a
remission. These patients are generally treated simulataneously with high
dose steroids also and are started on 6-MP or azathioprine also. After 3-6
months of therapy, when 6-MP or azathioprine has hopefully become
effective, cyclosporine is stopped and simultaneously steroids are reduced
and stopped if possible. This approach seems to be effective in the short
term with a significant proportion of patients with severe UC. However, a
significant proportion of these patients subsequently have surgery because
of inability to maintain them in remission.

2.2 Q: Are any other drugs used to treat IBD?

There are several different drugs in various stages of development for IBD.

2.2.1 Q Are nicotine patches ever used to treat UC?

Many UC patients have reported that their symptoms began after quitting
smoking. In fact in the vast majority of studies where it has been checked
a significantly lower proportion of UC patients smoke in comparison to
controls. This data is clearly consistent with smoking having a preventive
effect in UC. The mechanism of this is not understood.

In marked contrast a higher proportion of CD patients smoke compared to
controls and continued smoking is a predictor of post surgical recurrence
of CD. This data suggests that smoking may be a co-factor predisposing to
the development of CD. The mechanism of this predisposition is not
understood.

Due to the health risks of smoking, doctors have been skeptical of this
data. Recently more attention has been devoted to understanding the
relationship between smoking and IBD. One question that has stimulated
considerable work has been whether nicotine is responsible for the
apparently protective effect of smoking in UC?

Two relevant articles were recently published in The New England Journal
of Medicine looking at the potential therapeutic benefit of nicotine
patches, normally used to help people stop smoking, to induce remission of
active UC and to maintain remission. The patches were helpful in some
patients in the induction of remission but were not helpful in the
maintenance of remission. Most non smoking patients in the studies
suffered some side effects from the nicotine, including nausea, vomiting,
lightheadedness, headache and sleeplessness. More work needs to be done to
clarify the role of nicotine in therapy of UC.

2.2.2 Q: What about antibodies against TNF (Tumor Necrosis Factor)?

It is important to note that IBD has features in common with inflammatory
diseases that involve other parts of the body such as rheumatoid arthritis
and psoriasis for example. So therapies that are being developed for these
diseases may also be useful for treating IBD. There has been considerable
publicity recently given to the new data about the treatment of CD with
antibodies against Tumor Necrosis Factor (TNF). These antibodies are also
being evaluated in the treatment of rheumatoid arthritis.

2.2.2.1 Q: What is Tumor Necrosis Factor or TNF?

When the immune system is activated resulting in inflammation many chemical
messengers are released. These chemical messengers are produced by the
cells of the immune system and are called cytokines. These cytokines
interact with other cells encouraging them to become activated and thus
make the inflammation worse. TNF is one of the most important cytokines
involved in this process. The term Tumor Necrosis Factor refers to one of
its actions which led to its discovery.

2.2.2.2 Q: Does TNF serve any useful function?

In the setting of an infection TNF frequently plays an important role in
helping the immune system respond promptly and effectively. However, it is
believed that excessive and inappropriate production of TNF may be an
important contributory factor in the development of several diseases
characterized by inflammation and activation of the immune system such as
multiple sclerosis, rheumatoid arthritis and others.

2.2.2.3 Q: Is TNF important in IBD? just CD? what about UC?

Various strategies have been used to evaluate the importance of TNF in
both CD and ulcerative colitis (UC). Though some data does support a role
it has been difficult to convincingly demonstrate that there is excessive
production of TNF in either disease. The available data does seem to
suggest that TNF may be of more importance in CD than UC. The fact that
the new anti-TNF treatments seem effective in some patients is the best
evidence that TNF is important in the disease process of CD.

There has been one small study of an anti-TNF antibody in UC and a
preliminary report did not show impressive results.

2.2.2.4 Q: What is this new anti-TNF treatment?

The treatment consists of an antibody which is a protein that neutralizes
the action of TNF. Originally, the antibody was made by a mouse when it
was injected with human TNF. The immune system of the mouse recognized the
foreign nature of the human TNF and made antibodies against it. One of
these mouse antibodies was modified or humanized so that it would be less
likely to provoke an adverse reaction when injected into a human. There
are two antibodies that have been used to treat CD. The first, named cA2,
was developed by the biotechnology company Centecor. The cA2 antibody was
initially used in the treatment of severe infection. More recently it has
been evaluated for the treatment of rheumatoid arthritis. Because of
promising results in the arthritis studies a group of Dutch physicians
gave the antibody to a child with severe CD and there was a dramatic
response. This encouraged more comprehensive studies of the effectiveness
of the cA2 antibody to treat CD in Europe and the United States. The
second anti-TNF antibody has been developed by the biotechnology company
British Biotechnology and is called CDP571.

2.2.2.5 Q: How does the anti-TNF treatment work?

The antibodies blocks the action of TNF. The fact that it is so effective
in some patients has raised the question whether it is having some
additional effects on the immune system; however this remains to be
clarified. The most important aspect of its use is that it implies that
TNF does indeed seem to have an important role in the development of
inflammation of CD in a significant percentage of patients.

2.2.2.6 Q: Are there problems with the treatment?

Like most treatments for IBD it does not seem to work in all patients. In
the recently reported studies most patients who received the treatment had
a beneficial response about half of whom actually went into remission.

In those patients who have a response the effect is temporary, lasting
several months at best. The antibody is given by intravenous infusion and
cannot be given by mouth. It is not clear whether it can be given safely to
the same patient more than once. If indeed it can be given repeatedly it
remains to be seen whether it will continue to have a beneficial effect or
whether resistance will emerge.

The treatment will only be available as part of formal clinical studies for
the next few years. If it continues to have positive results and becomes
available as a standard therapy in the next few years it is likely to be
expensive.

2.2.2.7 Q: What sort of patients are suitable candidates for treatment with
anti-TNF antibody?

CD patients with active disease despite therapy with steroids; this is a
prerequisite for enrollment in the studies. Those patients who may
particularly be suitable for the anti-TNF therapy are those who cannot
tolerate 6-mercaptopurine or in whom 6-mercaptopurine has not worked or
have just been started on 6-mercaptopurine and a therapeutic effect is not
expected for several months. IMPORTANT: the anti-TNF antibodies are only
available as part of formal studies at present.

2.2.2.8 Q: What are the alternatives available at present?

The best tested and most effective medications at present are 6-MP and
methotrexate. Other medications are also being developed which block the
action of TNF which may be useful in the treatment of IBD in the future.

2.2.3 Q: What about Interleukin-10 (IL-10) therapy for CD?

IL-10 is another cytokine like TNF. Cytokines are chemical messengers
produced by the cells of the immune system that regulate its activity.
Unlike TNF, IL-10 suppresses the immune system and is presently being
studied in the treatment of CD. The results of this study are eagerly
awaited.

2.2.4 Q: What about fish oil for therapy?

There is some evidence that fish oil (attributed to the eicosapentaenoic
acid) has anti-inflammatory properties which may be useful in the treatment
of IBD and rheumatoid arthritis. In addition it may also be helpful in
preventing atherosclerotic cardiovascular disease. Patient acceptance of
fish oil therapy has been poor because of the indigestion and bad breath
associated with therapy. An Italian study last year using coated capsules
containing fish oil showed evidence of benefit in preventing recurrences of
CD with miminal side-effects. However, these capsules are not widely
available at present. In the interim various fish oil preparations
containing eicosapentaenoic acid are available from pharmacies and health
food stores which may be of therapeutic benefit despite the possible
side-effect of increased susceptibility to bleeding. Alternatively it may
be helpful to simply eat more fish in one's diet!

2.3 Q: Can different drugs be used together to treat IBD?

Many patients require treatment with more than one medication to adequately
control their symptoms. Frequently, several different combinations are
tried before the best one is found. Once symptoms are brought under control
then attempts are made to reduce the medications to a minimum.

2.4 Q: Will I need to keep taking medications permanently?

At this point in time because there is no cure for IBD (except removal of
the colon for patients with UC) it is advisable for many patients to
continue taking medications to keep them in remission. The reason for this,
which is supported by some studies, is that it is much easier to keep a
patient in remission rather than treat a flare of the disease. Similarly,
it is much easier to use sun screen to prevent sunburn rather than try to
treat sunburn after it has happened.

3.1 Q: Drugs aren't working, what can surgery do for my UC?

Drug treatments are ineffective in about 20% of UC patients. These patients
must have their colons removed due to debilitating symptoms. The colon may
also removed because of the threat of cancer. Removal of the colon
permanently cures the UC and usually all related symptoms. Patients having
these surgeries are generally hospitalized for about a week and return to
work in three to six weeks.

There is NO role for resections of only part of the colon in UC even when
the disease is limited in extent as it inevitably recurs in the colonic
remnant.

Once the colon is removed there are several options which may avoid the
need to wear a bag appliance to collect waste.

3.1.1 Q: What's an ileostomy?

The entire colon and rectum are removed and a small opening, about the size
of a quarter, called an ileostomy is made in the lower right corner of the
abdominal wall. The small intestine is then connected to this opening and a
colostomy bag is worn over the opening to collect waste. The patient then
empties the bag about four times a day.

3.1.2 Q: What's a Continent Ileostomy?

Another operation that gained popularity over an ileostomy avoids the use
of a colostomy bag by forming a pouch from the last 15-40 cm of ileum
inside the wall of the lower abdomen. A nipple valve in the abdominal wall
allows the patient to empty the pouch by inserting a catheter through the
ileostomy. Initially, the pouch must be emptied frequently, eight to ten
times daily. The pouch stretches and, after several months it will only
have to be emptied four to five times a day. This operation used to be
performed in two separate steps and the patient would have to wear a
colostomy bag for several months before the pouch could be attached. The
operation is now generally performed in one step, though it may be
performed as two steps if the patient is severely ill at the time of
surgery.

This procedure is generally not performed because it has many of the
possible complications and none of the benefits of the Ileoanal
Anastomosis, described below.

3.1.3 Q: What's an Ileoanal Anastomosis, or Ileoanal Pull-Through?

Since UC inflames only the innermost layer of the colon, the rectum can be
stripped of this layer and attached to the ileum after the colon is
removed. Early attempts to perform this surgery were frustrating as
patients predictably suffered from incapacitating diarrhea. The operation
was modified in 1980, adding an S or J shaped pouch just above the rectum
and patients achieved continence. The patient can then pass stools
normally, though bowel movements are more frequent and watery than in an
otherwise healthy individual without IBD. Like the Kock pouch, eight to
ten bowel movements a day are typical immediately after the surgery. The
pouch continues to stretch for several years and eventually it's only
necessary to have four or five bowel movements a day. In rare cases
(around 5% when the surgery is performed by an appropriately trained
surgeon) when other complications, such as infection occur, the pouch may
need to be converted to an ileostomy.

3.1.4 Q: What can go wrong with these surgeries?

The most common complication of these operations is inflammation of the
pouch, called pouchitis. Symptoms include pain, bloating, and diarrhea.
Most patients can control this by irrigating the pouch with saline solution
and taking antibiotics. In a few cases, a diagnosis of CD is confirmed in
patients thought originally to be suffering from UC.

Problems with the nipple valve in a continent ileostomy can cause leakage
of stool and an inability to insert the catheter. About 10% of patients
require a second operation to repair the nipple valve.

Remember that these have the same risks as any surgery, but that's outside
the scope of this FAQ.

3.2 Q: Are there surgical treatments for Crohn's?

Unlike in UC, there is no surgical cure for CD.

Physicians use the phrases "minimalist surgery" and "surgery avoidance"
when discussing surgical options for CD. This is because new Crohn's
lesions can appear after previously diseased areas have been removed and
even diseased tissue may be functionally useful. Many surgeons also feel
that "surgery in Crohn's patients just leads to more surgery".

Surgery for CD is usually a resection of the small intestines.

3.2.1 Q: What's a resection?

Severely affected portions of the intestine are removed and the healthy
ends are sewn together. This in no way prevents inflammation from recurring
later and is generally performed only when the inflammation is unable to be
controlled by medical therapy.

3.2.2 Q: After surgery for CD can anything be done to prevent it recurring
again?

Smoking is associated with recurrent disease following surgery in CD
patients. Clearly, CD patients must be strongly encouraged to stop smoking.

There is some evidence that 5-ASA drugs (especially Pentasa for small bowel
disease) may be useful in preventing disease recurrence after surgery. Some
experts use 6-MP following surgery in patients with a high risk of
recurrence and there is a trial in progress to see if it works in this
setting. There is also some limited evidence that metronidazole may be
helpful in preventing disease recurrence following surgery. Fish oil may
also be a relatively safe option though it is not of proven benefit.

4.1 Q: What role does diet play in IBD?

Most patients find that certain foods are tolerated less well than others
when symptoms are active, but there is no evidence that these foods
directly affect the inflammation. The most common offenders are milk
products (see the section on lactose intolerance below), spicy
foods, fats, and sugars. In general, a bland low fiber diet avoiding
fruits, vegetables, nuts, and whole grains is preferable when the disease
is active. A high fiber diet is to be recommended when symptoms aren't
present.

Due to reduced appetite, malabsorption of nutrients, and increased
nutritional needs, it's important to make sure you follow a proper diet.
Since the small intestine is where the body absorbs nutrients from food,
CD patients may have problems absorbing these nutrients. If more than two
or three feet are either diseased or surgically removed,malabsorption,
especially of fats, the minerals calcium and magnesium, and the fat
soluble vitamins A,E, and D, can be a problem. Resection of at least two
feet may also increase absorption of oxalate, which reacts with calcium to
form kidney stones. A low oxalate and low fat diet will help prevent
kidney stones. Spinach, cocoa beans, rhubarb, beets, instant coffee, diet
sodas and tea are all high in oxalate. If only the terminal ileum, the
last two to three feet of the small intestine, is diseased or resected,
absorption will be normal except for vitamin B-12 which can be
supplemented by monthly injections. Iron supplements are helpful in
treating the anemia and patients should drink plenty of fluids to replace
those lost from diarrhea.

4.1.1 Q: What is an elemental or astronaut diet?

Astronaut diets (for example Ensure, Sustacal and Peptamen) are liquids
meeting all nutritional needs and are almost completely absorbed in the
upper intestinal tract. Because they don't require much digestive effort by
diseased bowel they often seem to be better tolerated than regular food by
patients with active and/or severe disease. Elemental diets (for example
Vivonex) consist mainly of pure amino acids (the building blocks that make
up proteins) and are even easier to digest. There is some evidence that
elemental diets may be helpful therapeutically in CD. However, these diets
are expensive and patients find it difficult to comply with them on a long
term basis so they have not evolved into a practical treatment.

In contrast there is no evidence that elemental diets are of benefit in UC.

4.1.2 Q: What is total parenteral nutrition?

Total parenteral nutrition (TPN), or hyperalimention, delivers a
concentrated solution of nutrients intravenously. This is used in very
active disease either giving it time to subside, or to nourish the patient
before surgery.

People with Crohn's Disease generally benefit more than those with UC
because CD usually affects the small intestine, which is where nutrients
are absorbed. TPN may, however, occasionally be warranted in critically ill
people with UC.


4.1.3 Q: What is lactose intolerance?

It's commonly estimated that about 30% of the world's adult population
suffers from lactose intolerance, though this may be even higher in
patients with IBD. A much higher than normal fraction of Asians suffer from
lactose intolerance.

Lactose is a sugar found in milk, milk products, and foods made with milk.
The enzyme lactase, normally produced in our intestines, breaks down
lactose during digestion. Lactose intolerant people don't produce enough
lactase and therefore cannot digest lactose.

Symptoms of lactose intolerance include a bloated feeling, abdominal pain,
flatulence, and diarrhea shortly after consuming milk or milk products.
Sound familiar? It's not something that you want to subject yourself to
in addition to the symptoms of Crohn's or UC. A simple laboratory test can
determine whether one is lactose intolerant or not. The severity of
symptoms is highly individual and most people do not need to eliminate
lactose from their diet entirely.

4.1.3.1 Q: So what can I do about lactose intolerance?

1. Reduce or Remove milk and milk containing foods from your diet. These
include milk chocolate, butter, cheeses, ice cream and lactose--it's an
ingredient by itself in some foods. Check the label!

2. Eat foods containing lactose with meals containing protein and fat, not
alone.

3. Use a lactose reducing product available over the counter at most
pharmacies (Dairy Ease or Lactaid). These contain lactase and are either
consumed with lactose rich food or added to it before eating.

Some dairy products have reduced lactose content. These include yogurt and
Lactaid Milk.

4. Fermented milk products, such as aged cheeses, contain less lactose and
are usually better tolerated. Cottage and ricotta cheese are OK, cheddar
has about the least. Buttermilk contains as much lactose as milk.

5. A calcium supplement may be needed if dairy products are reduced or
eliminated from your diet.

5.1 Q: What part does stress play in IBD?

Emotional stress plays a large part in the health of some patients and is
often cited as the trigger of a relapse, though there is no clear cause and
effect relationship proven. It may be more likely be that stress is one
result of a flare-up rather than being a factor contributing to one.
Treatment of IBD sometimes may usefully include the teaching of stress
reduction techniques such as meditation.

This is a controversial subject with somewhat "political" overtones. Many
patients resent the assumption of family and friends and even some doctors
that stress is a cause of their illness, when in fact it is just an
exacerbating factor (as is the case with other illnesses, as well). Many
people need reassurance that all this is not their fault or "all in their
head". It's been proven that stress does NOT cause IBD, although with IBD
as with any illness stress can exacerbate symptoms.

Because of the nature of these illnesses and the unpleasant symptoms that
result patients frequently feel very uncomfortable about discussing them
even with close friends and family. Denial may be a factor that inhibits
patients from getting appropriate evaluation and therapy.

Many patients find patient support groups to be extremely helpful in
addressing these issues and enabling patients to constructively and
positively learn how to live with these chronic illnesses. Many patients
not comfortable with group discussions have found it particularly helpful
to consult with a psychologist experienced in the evaluation of patients
with IBD.

5.2 Q: Can anything else cause a flare up?

Significant anecdotal evidence suggests that flares of IBD often occur
after increased use of non-steroidal anti-inflammatory drugs (NSAID's),
such as aspirin and ibuprofen. Accordingly, patients should be very careful
about taking these medications and be aware that they may cause a flare of
their disease. In fact, some physicians who are very experienced in
managing IBD feel these drugs should rarely if ever be used by IBD
patients.

6.1 Q: How can I make the most of my consultations with my physician?

For your physician to treat you most effectively it is vital that you
adequately describe your symptoms. Many patients are reticent about
describing urgency and episodes of incontinence for example which may be
readily treated with local topical therapy. If despite the best efforts of
your physician you are not doing well either having continued symptoms or
requiring continued high dose steroids then it may be appropriate to
consider asking for a second opinion. This is best done in conjunction with
your regular physician.

======================================================================

COPYRIGHT NOTICE

Copyright 1997 by Kevin Horgan, M.D., Christopher Holmes and Michael
Bloom. 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 authors. This includes, but is not limited to,
translations into foreign languages, mass archival as on a CD_ROM and
inclusion in commercially published compilations (books).

You are free to copy this list 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
list, and

(3) this copyright notice and the following disclaimer remain attached.

DISCLAIMER:
==========
This FAQ is provided by the authors "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 authors 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; the information contained herein is presented by the
authors 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.


______________________________________________________________________________
Kevin Horgan, MD
kho...@ucla.edu
310-206-3580 phone
310-206-9049 fax

--
November 15
Today I made a Black Forest cake out of five pounds of cherries and a
live beaver, challenging the very definition of the word cake. I was
very pleased. Malraux said he admired it greatly, but could not stay for
dessert. Still, I feel that this may be my most profound achievement yet,
and have resolved to enter it in the Betty Crocker Bake-Off.

s...@panix.com

unread,
Apr 18, 2004, 8:54:01 AM4/18/04
to

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


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 s...@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
j...@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 na...@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 shil...@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 CI...@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 10173...@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 if...@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: if...@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...@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:
list...@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.

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.

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