
Archive-name: medicine/crohns-colitis-faq
Posting-frequency: every two weeks
Last-modified: 1994/12/02
Version: 1.2

                       Inflammatory Bowel Disease
                       Frequently Asked Questions

                              Version 1.2
               This document was last modified on 12/02/1994

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 holmes@mrx.webo.dg.com.
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 IBD mailing list) or anything
unrelated to the content of this FAQ.  Sorry. 

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

Copyright 1994 by Christopher Holmes.  All rights reserved.  See the end
of this document for information on permission to use, copy and
distribute.  Many thanks to Michael Bloom and Sue (smb@panix.com) for
their help as well. 

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 monthly 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 only the IBD FAQ is currently there, there are two other
FAQ's, the info-resources and IBS FAQ.  The info-resources FAQ
describes, no surprise here, informational resources 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
WWW sites.  The IBS FAQ deals with Irritable Bowel Syndrome, which has
symptoms that can be similar to those of UC or CD.  Neither FAQ is
currently archived there and, as of this writing, the authors do not
have plans to archive them there.  Both are posted to ascc monthly. For
those with World Wide Web access, all three FAQs can also be found at
http://qurlyjoe.bu.edu/cduchome.html.  Kudos to Stuart Anderson for the
HTML versions. 

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

Questions answered by this FAQ:
==============================
1.0 Digestive system primer
1.1 Q: What is Inflammatory Bowel Disease?
1.1.1 Q: What is ulcerative colitis?
1.1.2 Q: What is Crohn's disease?
1.1.3 Q: What is Crohn's colitis?
1.1.4 Q: What is ileitis?
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 is iritis?
*1.2.3 Q: What is optic neuritis?
*1.2.4 Q: What is erythema nodosum?
*1.2.5 Q: What is pyoderma gangrenosum?
1.2.6 Q: What other complications can occur?
1.2.7 Q: What is toxic megacolon?
1.2.8 Q: What are fistulas and abscesses?
1.2.9 Q: What are strictures?
1.2.10 Q: What is the cancer risk in IBD patients?

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

1.7 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 are adrenal corticosteroids (steroids)?
2.1.3.1 Q: What are the side effects from taking steroids?
2.1.3.2 Q: What is meant by "Alternate Day Therapy"?
2.1.3.3 What is Budesonide?
2.1.3.4 What is ACTH?

2.1.4 Q: What are immunosuppressive drugs and when are they used?
2.1.4.1 Q: What are  Azathioprine and 6-MP?
2.1.4.2 Q: What's Methotrexate?
2.1.4.3 Q: What's Cyclosporine?

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

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: 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?

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?

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

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

It seems that many people don't understand how their digestive systems
function and believe that intestines, bowels, and colon are all different
organs.  So here's the poop, if you'll excuse the pun: Bowel is
synonymous with intestine, and colon is just another name for the large
intestine.  The term GI tract refers to the entire system. 

So you chew your food and swallow it, then what happens?  It drops down
your throat, or esophagus, and into your stomach, where it's churned up
and mixed with acid.  After food leaves your stomach, it passes through
a valve into your small intestine where it's mixed with bile produced in
your gall bladder.  The small intestine is about thirty feet long and
its function is to absorb nutrients from the food.  The food is pushed
along by peristaltic action, which works like this: the muscle
surrounding the intestine relaxes in front of the food and contracts
behind it, pushing it forward.  After completing its passage through the
small intestine, it passes into your large intestine (the appendix is
attached at the junction between the two).  The colon's primary function
is to absorb the remaining water.  When this function is disturbed by UC
or CD, the water is not completely absorbed and the result is diarrhea.
The last stop is your rectum, which is just a holding area, and then
then it's out to a toilet through the anus, or sphincter muscle. 


1.1 Q: What is Inflammatory Bowel Disease?

Inflammatory Bowel Disease (IBD) is an umbrella term referring to two
related diseases, ulcerative colitis (UC) and Crohn's disease (CD). 

In both diseases, the primary cause of symptoms is inflammation within
the digestive tract.  The characteristics and location of the
inflammation vary depending upon the form of disease present. The
location and characteristics also vary from person to person, but to a
lesser extent than the variation between the two diseases. 

Both diseases are chronic, often diagnosed in the early 20's.  Some
patients have alternating periods of relative health (remission)
alternating with periods of disease (relapse), while other patients
require constant suppression of their disease with anti-inflammatory
drugs and never achieve a true "remission". 

Severity of the diseases also 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 many medications are available to control symptoms. 

1.1.1 Q: What is ulcerative colitis?

Ulcerative colitis is an inflammatory disease of the large intestine,
commonly called the colon.  UC causes inflammation and ulceration of the
inner mucosal lining of the colon.  The disease is usually most severe
in the anorectal 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 Crohn's disease rather than ulcerative colitis.
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 Crohn's disease, but not in ulcerative
colitis. 

About 50% of patients are free of symptoms at any given time but 97%
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 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 ileocecal region, or the lower part of the small
intestine.  Other cases may affect one or more of: the colon only, the
small bowel only, the anus, duodenum, stomach or esophagus. 

In contrast with UC, CD often doesn't affect the rectum, but frequently
affects the anus instead. 

1.1.3 Q: What is ileitis?

This is Crohn's disease of the ileum, or 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
Crohn's disease of the ileum. 

1.1.4 Q: What is Crohn's colitis?

This is Crohn's disease affecting part or all of the colon. This form
comprises about a fifth of all cases of CD.  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 confined to the inner mucosal
surface, Crohn's disease 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.  Irritable Bowel Syndrome
(IBS) is a condition resulting in frequent diarrhea.  It is not an
inflammatory process and may occur either without, or in conjunction
with, IBD. 

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 proximity to a toilet (in some cases up to 20
or more times a day).  Abdominal cramps are often present, the severity
of which may, in some persons, 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.  This can sometimes be caused by partial obstructions
of the intestines.  It may also indicate tenesmus.  Inflammation can
affect gut nerves in such a way as to make you feel that there is stool
present, when there actually is not.  That, and the presence of
abdominal pain, rectal pain, and abdominal distention can make you think
you're is constipated, despite diarrhea ("the liquid's coming out, but
the hard stuff isn't").  This can lead one to strain to eliminate stools
that aren't there, believing falsely that there is something left to
eliminate.  Tenesmus can actually cause some patients with diarrhea to
believe that they are constipated! This can serve to confuse or delay
diagnosis. 

Pain may be experienced either as the result of intestinal cramping, or
of inflammation impinging on the nerve layers of the gut, or both. 

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. 

Symptoms of both diseases frequently occur in other parts of the body as
well, especially in CD. 

The severity of primary UC symptoms is usually proportional to the length
of diseased intestine. Severity of primary CD symptoms depends on the
location as well. 

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

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

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. 

Many IBD patients experience a wide variety of extra-intestinal
manifestations of their disease.  The most common of these is joint
pain.  Others include iritis, optic neuritis, erythema nodosum, and
pyoderma gangrenosum. 

One explanation that has been proposed for these conditions is that the
inflamed intestinal tissues release antigens into the bloodstream which
travel to other areas of the body where they collect and are then
attacked by antibodies. 

1.2.2 Q: What is iritis?

Iritis is an inflammation of some part of the eye.  UC and steroid use
can cause it, but it is rare. 

1.2.3 Q: What is optic neuritis?

1.2.4 Q: What is erythema nodosum?

1.2.5 Q: What is pyoderma gangrenosum

Skin ulcers.

1.2.6 Q: What other complications can occur?

10 to 20% of people with IBD experience symptoms beyond diarrhea and
those related to blood and fluid loss.  Fever and fatigue are the most 
common.

Severe blood loss from UC can lead to rapid heartbeat and a drop in blood
pressure.  

Crohn's sufferers can develop fistulas, abnormal connections between
organs, and bowel obstructions, both of which can result in abdominal
cramps and vomiting.  These can sometimes be treated without surgery.
Hemorrhoid-like skin tabs and anal fissures may also develop.  

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

1.2.7 Q: What is toxic megacolon?

Toxic megacolon is a severe dilation of the transverse colon which
occurs when inflammation spreads from the mucosa through the remaining
layers of the colon.  The colon becomes paralyzed, which can lead to
eventual bursting of the colon.  Such perforation is a dire medical
emergency with a 30% mortality rate.  Anyone with UC or CD bad enough to
be at risk for toxic megacolon has already been hospitalized for a
while, so it shouldn't be a great concern.

Use of opiates, opioids and/or antispasmodics can lead to this
complication. 

1.2.8 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 tracts between the small and large bowels. 

Fistulas can also become infected. forming abscesses.  Acbsesses 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.  A more elaborate procedure,
known as a fistulectomy, may be necessary to prevent reaccumulation of
these abscesses, and is usually desirable in any case. 

Fistulas are relatively common in Crohn's patients and rare in patients
with UC. 

1.2.9 Q: What are strictures?

Patients with Crohn's disease in the small intestine may develop bowel
obstructions, called strictures, 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 from healed lesions. In
some cases, 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 inner diameter of the
intestine (in a manner similar to the use of angioplasty to deal with
constricted blood vessels)

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

1.2.10 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 normal, with a 5-10% incidence 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
greater than normal.  Patients that exhibit dysplasia, or pre-cancerous
changes in cells that can be detected by a biopsy, are at higher risk.

The risk of colon cancer in patients with colonic Crohn's Disease is
only slightly higher than that of the general population. 

According to Thompson, "other cancers, such as lymphoma or carcinoma of
the small intestine or anus, may be more common in Crohn's disease."

You should have colonoscopies and biopsies performed regularly if you're
at higher than normal risk so that cancer can be detected as early as
possible. 

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).  One prominent author tends to lean towards the
possibility that a slow virus may be the cause. 

While there is no clear pattern of inheritance of these diseases, some
relationships have been seen: 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.

1.5 Q: Who gets these diseases?

About 2,000,000 Americans are estimated to suffer from IBD [global
statistics, anyone?] with males and females affected equally.  

The disease can appear at any age, but the age at which patients are
first diagnosed falls neatly onto a bell curve centered at about 24
years old, falling off quickly in the late teens and early thirties. 

There are no factors known to predispose one to these diseases, but
there are significantly more cases in western Europe and the US than
other parts of the world. 

1.6 Q: How is ulcerative colitis diagnosed?

Because there is no known cause, a diagnosis is made based on symptoms
alone.  The presence of (possibly bloody) diarrhea, and/or rectal
burning may prompt your doctor to perform 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.  Biopsies, both normal and
barium x-rays will help to narrow down the diagnosis. 

Usually is it possible to tell the difference between Crohn's
and UC, but there may be some uncertainty between a diagnosis of UC and
CD affecting the colon.  Occasionally a diagnosis of UC will turn out to
be CD.

1.6.1 Q: What are flexible sigmoidoscopy and colonoscopy?

Flexible sigmoidoscopy and colonoscopy are procedures that allow doctors
to examine the lining of the large intestine. In both procedures, the
physician inserts a flexible fiber-optic tube through the anus.  The
doctor is able to move this tube through the gut to view the mucosal
lining of the intestines.

Colonoscopy is a more elaborate procedure that is used to examine the
entire length of the colon.  It is normally performed in an outpatient
hospital setting for several reasons.  One is that modern colonoscopes
have fairly expensive optical systems and controls. Another is that
there is a small, but definite, risk of colon perforation during the
examination, so it's best to have emergency services immediately
available. 

>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 (the bend at which point the descending colon and transverse
colon meet). 

Biopsies, or tissue samples may be taken during either procedure.  It is
preferable to take biopsies in a hospital setting, so these are more
commonly taken with colonoscopy than with sigmoidoscopy.  Biopsies are
sent to a pathology lab where they are examined by a pathologist to help
determine whether UC, CD, or some other condition (such as cancer) may
be present. 

1.7 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 is found by
studying the nature 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 clear indication of CD may be
seen. 

Diagnosis of small bowel CD is may sometimes be made by clinical
observations of small bowel Crohn's symptoms followed by upper GI barium
x-rays with small bowel follow through, and/or upper gastrointestinal
endoscopy.  In small bowel follow through, the small bowel is x-rayed as
barium passes through it.  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. 


2.1 Q: What Drug therapies are used in IBD?

Lots.  The two most widely used drug families are steroids and 5-ASA
drugs, both of which reduce inflammation of the affected tissues.

Immunosuppressive drugs are finding increased usage for long-term
treatment of IBD, but are still somewhat experimental and have more
severe 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.  It is similar to aspirin,
but has a 5-amino group in place of aspirin's acetyl group.  5-ASA is
easily broken down by bacteria in the GI tract, so it requires a "means
of delivery" to the affected tissues.  Different 5-ASA drugs use
different delivery techniques.

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 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
intestines.  The sulfapyridine is mostly 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. 

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 it's current use as the mainstay IBD treatment. 

2.1.1.2 Q: What is Dipentum?
	
    Olsalazine Sodium (Dipentum)

Olsalazine is a drug that uses a variant on sulfasalazine's delivery
mechanism. Where 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 in the terminal ileum and 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. 

In the US, olsalazine is approved only for use by those who are
intolerant of sulfasalazine who have UC that is currently in remission,
and only for the purpose of maintaining that remission. It is not
approved for treating active disease. 

2.1.1.3 Q: What is Asacol?
	
    Mesalamine, USA; Mesalazine, Europe (Asacol) :

Asacol is essentially "Azulfidine without the sulfa".  This formulation
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. 

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 coverage than the other 5-ASA drugs. 

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. 

Rowasa also comes in suppository form for treating proctitis.

2.1.2 Q: What is Metronidazole? 

    Metronidazole (Flagyl) :

An antibiotic that is best known for treating vaginal infections,
metronidazole has curious properties in treating Crohn's disease.  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. Doctors actually disagree on whether it is having
an anti-inflammatory effect or is simply beneficial due to its
antibiotic properties by killing bacteria that are tolerated by healthy
people's guts(known as commensual bacteria) or even killing something no
one has found yet.  Equally of interest, while there are those who
respond well to treatment with metronidazole, but not to sulfasalazine,
the reverse has not been found to be true. 

May cause cancer with long term use, though many doctors tend to
discount this. 

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

2.1.3 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 step is
usually steroids, 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 Crohn's, but not for
maintaining remission. The oral forms can, however, be effective in
suppressing active Crohn's disease to the point of appearing to be in
remission. 

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

Side effects from steroids vary widely between patients, but are
generally pretty severe.  Common side effects include rounding of the
face (moonface) 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, peptic ulcers, 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. 

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 patients
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. 

2.1.3.2 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. 

2.1.3.3 Q: What is Budesonide?

Budesonide is currently in "beta testing".  It's supposedly a
non-absorbed steroid.  Oral and enema forms are available, depending
upon location to be treated. 

2.1.3.4 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.

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

Immunosuppressives are sometimes used in difficult cases of IBD that do
not respond to less drastic medical therapy.  They may also allow
reduction of steroid dosages in steroid dependent patients.  Physicians
(and patients!) are generally reluctant to try them because they can
have extreme side effects.  These can include various blood problems,
bone marrow suppression, extensive immune suppression, carcinogenic
effects, kidney damage, liver damage and various other effects,
including such minor ones as hair loss.  Some toxicities resulting from
their use may be irreversible.  Thus, usage of these drugs requires
frequent monitoring by blood tests.  Patients must also take special
care to avoid infections, and/or bruises and cuts. 

2.1.4.1 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, but a newer drug, Cyclosporine, is now more
commonly used for that purpose.  6-mp is one of the metabolites of
Azathioprine. 

Both drugs have shown some degree of efficacy when used in combination
with Prednisone.  By this measure, they can be called "steroid sparing"
drugs.  Unfortunately, many people cannot tolerate these drugs, but for
those who can, the long term side effects may or may not turn out to be
as serious and as severe as those of steroids.  6-mp has also shown some
degree of efficacy when used alone, and can sometimes be used to help
wean patients off of Prednisone. 

Still not widely used, these drugs show promise in maintaining remission
in Crohn's patients and some patients with UC once remission is achieved
by other means. 

The average time to respond to the drug is about three months and can be
as long as nine months.  These drugs are effective in maintaining
remission in about 80-90% of patients. 

2.1.4.2 Q: What's Methotrexate?

   Methotrexate (Folex, Mexate in the US) :

Like the other immunosuppressants, May have some benefit in treating
active Crohn's disease.

2.1.4.3 Q: What's Cyclosporine?

   Cyclosporine :

Clinical trials [Brynskov, et al] have indicated that doses of
Cyclosporine above 5 mg/kg/day showed some improvement over placebo for
treatment of active disease.  A smaller dosage (4.8gram) in a
maintenance study [Archembeault, et al] showed that this drug offered no
improvement over placebo, and in some cases did more harm than good. 

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

Experimental Drugs:

    Nicotine

Many UC and Crohn's patients have reported that their symptoms began
after quitting smoking.  Other patients that continue to smoke often
have symptoms improve, suggesting that smoking helps UC.  Some believe
that Crohn's disease is directly associated with smoking while other
Crohn's patients continue to report that smoking eases their symptoms. 

Due to the health risks of smoking, doctors have been skeptical of such
anecdotal reports, but recently have been focusing increasing attention
on this issue.  One question to be asked is: If there is any validity to
such reports, is it nicotine or some other component of tobacco smoke
that can be held accountable? 

An article in The New England Journal of Medicine describes a small test
of nicotine patches, normally used to help quit smoking, to induce
remission of UC.  The study tested 77 patients with active UC.  Complete
remission was induced in 17 of 35 patients treated with the nicotine
patch over a period of six weeks, compared with 9 of 37 treated with a
placebo patch.  Most nonsmoking patients suffered some side effects from
the nicotine, including nausea, vomiting, lightheadedness, headache, and
sleeplessness. 

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 are a few ways to go about removing the colon.  They are
ileostomy, continent ileostomy, and ileoanal anastomosis.

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 any more because it has all
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 patients with this operation 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 normal.  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 when other complications, such as infection or
cancer, occur, the pouch can 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 very few cases, a diagnosis of
Crohn's is confirmed in patients thought 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 Crohn's disease.  This is because
healing after surgery can be extremely poor, and because new Crohn's
lesions can appear after previously diseased areas have been removed.
Many surgeons also feel that "surgery in Crohn's patients just leads to
more surgery". 

Thus surgery is even more of a last resort in Crohn's than it is in UC.

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

2.3.1 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
life-threatening. 

See the section on diet, below, about possible malabsorption of
nutrients after resection. 

Resection of diseased colon used to be performed on UC patients, but the
disease recurs quickly in almost all patients, usually beginning at the
point of resection.

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 may be helpful 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,
Crohn's 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 or elemental diets (Ensure, Sustacal, and others) 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 may be helpful by allowing it to rest. 

4.1.2 Q: What is total parenteral nutrition?

Total parenteral nutrition, 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. 

Both methods are generally more useful in Crohn's patients than in UC
patients. because Crohn's usually affects the small intestines, where
nutrients are absorbed.  

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, and 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 includes teaching 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. 

5.2 Q: Can anything else cause a flare up?

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.  Evidence also suggests that flares of Crohn's
often occur after increased intake of simple sugars. 

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

Copyright 1994 by Christopher Holmes, Michael Bloom and Susan Blanc.
All rights reserved. 

This document, or any derivative works thereof, may not be sold or
redistributed for profit in any way without express (not email) written
permission of the 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 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 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; please discuss anything you're read here with a doctor
before making any decisions about treatment. 

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