Hello pac1-ga!
It sounds like you?ve been through quite a bit recently. I hope that
the information I?ve found helps give you a better sense of how to
?get on top? of what is affecting you. Ulcerative Colitis (UC) can
affect individuals quite differently, so it is difficult to make
generalizations that fit everyone. With that said, I did find
information to answer all of your questions. You are right in saying
that many of the ?answers? out there regarding UC are either
controversial or haven?t been researched thoroughly, especially when
it relates to nutrition and alternative therapies. This answer is not
intended to substitute for the opinion of a qualified health
professional that you trust. If you have any specific concerns or
questions you should discuss them with him or her. Here is what I
found.
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PROGRESSION OF ULCERATIVE COLITIS
Ulcerative Colitis is fundamentally an immune problem, and each of our
immune systems respond individually to triggers. To pinpoint exactly
how long it takes to develop extensive disease, how long a flare will
last, and how long one can expect to be in remission is virtually
impossible. Here is information about typical flare periods.
?Each time ulcerative colitis acts up, symptoms can occur for weeks or
months. Often these flare-ups are separated by months or years of good
health with no symptoms.?
http://www.intelihealth.com/IH/ihtIH/EM/9339/9516.html
?A flare-up is when the rectum and/or colon become inflamed. During a
flare-up, people experience periods of increased symptoms of
ulcerative colitis, such as bloody diarrhea, rectal bleeding,
abdominal pain or cramping, and an urgent need to go to the bathroom.
Flare-ups can vary in duration and intensity. . . Remission is the
time between flare-ups of ulcerative colitis when people experience
few, mild, or no symptoms of ulcerative colitis. Periods of remission
vary in duration, anywhere from a matter of days to a number of
years.?
http://www.living-better.com/understand_10.jsp#2
Commonly accepted causes of flares include popcorn, fried foods, nuts,
stress, and a change in seasons, although very little research has
confirmed any one cause of flares. Stress is one thing that has been
thought to cause UC to flare.
?Whether you have a sudden flare-up or a gradual one, they can
reappear at any time and last days or weeks. No one can predict when a
flare-up will happen but once you experience symptoms, contact your
doctor.?
http://www.pentasausa.com/lwuc_flareups.asp
?Factors that may cause ulcerative colitis to flare up include
medications, infections, hormonal changes, and lifestyle changes,
including increased stress.?
http://www.memorialhermann.org/library/healthguide/en-us/illnessconditions/topic.asp?hwid=uf6020
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STANDARD TREATMENTS
Determining what exactly constitutes ?appropriate? treatment is a
sticky subject. Your physician has the benefit of being able to talk
with you about symptoms you are experiencing, review your medical
history and medications, examine you, and order diagnostic testing. He
also has the chance to prescribe treatments and then make adjustments
based upon the outcomes of those treatments. What I will do here is
present what is commonly thought of as ?standard? treatment of UC, and
you can make your own judgment as to whether or not you received
?appropriate? treatment.
There are 3 classes of medications that are traditionally used first
in treating UC: anti-inflammatory agents, corticosteroids, and
immunomodulators. Here is some information about those medications.
?Since ulcerative colitis cannot be cured by medication, the goals of
treatment with medication are to 1) induce remissions, 2) maintain
remissions, 3) minimize side effects of treatment, and 4) improve the
quality of life. . . .
Anti-inflammatory medications that decrease intestinal inflammation
are analogous to arthritis medications that decrease joint
inflammation (arthritis). The anti-inflammatory medications that are
used in the treatment of ulcerative colitis are:
* Topical 5-ASA compounds such as sulfasalazine (Azulfidine),
olsalazine (Dipentum), and mesalamine (Pentasa, Asacol, Rowasa enema)
that need direct contact with the inflamed tissue in order to be
effective.
* Systemic anti-inflammatory medications such as corticosteroids
[prednisone, etc.] that decrease inflammation throughout the body
without direct contact with the inflamed tissue. Systemic
corticosteroids have predictable side effects with long-term use.
Immunomodulators are medications that suppress the body's immune
system either by reducing the cells that are responsible for immunity,
or by interfering with proteins that are important in promoting
inflammation. Immunomodulators increasingly are becoming important
treatments for patients with severe ulcerative colitis who do not
respond adequately to anti-inflammatory agents. Examples of
immunomodulators include 6-mercaptopurine (6-MP), azathioprine,
methotrexate, cyclosporine.?
http://www.medicinenet.com/ulcerative_colitis/page4.htm#tocf
You?ve mentioned that you are now on Remicade. This has been in use
for some time in autoimmune diseases such as rheumatoid arthritis, and
even in treating Crohn?s disease. Late last year the FDA approved its
use in treating moderate to severe UC. It is usually started after
patients fail to respond to the traditional treatments mentioned
above.
?Infliximab (Remicade) is an antibody that attaches to a protein
called tumor necrosis factor-alpha (TNF-alpha). TNF-alpha is one of
the proteins produced by immune cells that promote inflammation. By
attaching to TNF-alpha, infliximab blocks its activity and in so doing
decreases inflammation. . . .
Recent studies involving small numbers of patients with severe
ulcerative colitis who are not responding to high dose steroids
indicated infliximab may be beneficial in controlling disease and in
decreasing the need for urgent removal of the colon. Placebo
controlled studies involving larger number of patients will be
conducted to determine the efficacy and safety of infliximab in
ulcerative colitis.?
http://www.medicinenet.com/ulcerative_colitis/page9.htm#tocs
WebMD had this to say about Remicade?s use in UC.
?Nearly two out of three patients who did not respond to approved drug
therapies for [ulcerative colitis] had improvements in their symptoms
when treated with Remicade. About a third of the patients
participating in the two studies had control of their symptoms after
eight weeks on the drug.?
http://www.webmd.com/content/article/106/108090.htm
An article entitled ?Infliximab for Induction and Maintenance Therapy
for Ulcerative Colitis? appeared in the December 8, 2005 ?New England
Journal of Medicine.? In the abstract it mentions the usual dosing
frequency for Remicade in treating UC.
?Patients with moderate-to-severe active ulcerative colitis treated
with infliximab at weeks 0, 2, and 6 and every eight weeks thereafter
were more likely to have a clinical response at weeks 8, 30, and 54
than were those receiving placebo.?
http://content.nejm.org/cgi/content/abstract/353/23/2462
Because UC is limited to the large intestine (colon), surgery can be
curative. Not all UC patients will require surgery, but some who do
not respond to medications may need to have a colectomy in order to
restore some quality of life.
The Crohn?s and Colitis Foundation of America has this to say on their website.
?In one-quarter to one-third of patients with ulcerative colitis,
medical therapy is not completely successful or complications arise.
Under these circumstances, surgery may be considered. This operation
involves the removal of the colon (colectomy). Unlike Crohn's disease,
which can recur after surgery, ulcerative colitis is ?cured? once the
colon is removed.?
http://www.ccfa.org/info/about/ucp
The National Institute of Health has an excellent article that
discusses UC. Here is a short excerpt from that article that talks
about surgery.
?About 25 to 40 percent of ulcerative colitis patients must eventually
have their colons removed because of massive bleeding, severe illness,
rupture of the colon, or risk of cancer. Sometimes the doctor will
recommend removing the colon if medical treatment fails or if the side
effects of corticosteroids or other drugs threaten the patient?s
health.?
http://digestive.niddk.nih.gov/ddiseases/pubs/colitis/index.htm
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PROPOSED CAUSES
As your doctors have probably already told you, there is no one cause
for UC. There have been many proposed causes, and some that people
claim have caused their particular cases, but research has not
confirmed a single cause. It does seem to run in families so one?s
chance to develop UC increases if another family member has
inflammatory bowel disease. What is apparent is that UC is a result of
an immune system that attacks the patient?s own body. It is just not
clear why the immune system reacts in that way.
?Ulcerative colitis and Crohn's disease are caused by abnormal
activation of the immune system in the intestines. . . . Activation of
the immune system causes inflammation within the tissues where the
activation occurs. (Inflammation is, in fact, an important mechanism
of defense used by the immune system.) Normally, the immune system is
activated only when the body is exposed to harmful invaders. In
patients with Crohn's disease and ulcerative colitis, however, the
immune system is abnormally and chronically activated in the absence
of any known invader. The continued abnormal activation of the immune
systems causes chronic inflammation and ulceration. The susceptibility
to abnormal activation of the immune system is genetically inherited.
First degree relatives (brothers, sisters, children, and parents) of
patients with IBD are thus more likely to develop these diseases.?
http://www.medicinenet.com/ulcerative_colitis/page2.htm#tocb
Here is another quote about how inflammatory bowel disease develops.
?Although considerable progress has been made in IBD research,
investigators do not yet know what causes this disease. Studies
indicate that the inflammation in IBD involves a complex interaction
of factors: the genes the person has inherited, the immune system, and
something in the environment. Foreign substances (antigens) in the
environment may be the direct cause of the inflammation, or they may
stimulate the body's defenses to produce an inflammation that
continues without control. Researchers believe that once the IBD
patient's immune system is ?turned on,? it does not know how to
properly "turn off" at the right time. As a result, inflammation
damages the intestine and causes the symptoms of IBD. That is why the
main goal of medical therapy is to help patients regulate their immune
system better.?
http://www.ccfa.org/info/about/ucp
?The cause of ulcerative colitis is unknown. Studies suggest that this
and other inflammatory bowel diseases may result from an abnormal
response by the body's immune system to normal intestinal bacteria.
Disease-causing bacteria and viruses, such as the virus that causes
measles, also may play a role in causing the condition.
Ulcerative colitis can run in families; some people may have a genetic
tendency to develop the condition when exposed to something that
triggers an immune reaction.?
http://www.webmd.com/hw/inflammatory_bowel/uf6022.asp
?Theories about what causes ulcerative colitis abound, but none have
been proven. The most popular theory is that the body?s immune system
responds to an antigenic trigger that activates the immune response in
ulcerative colitis. Over the years, an intensive search has been
ongoing to identify the antigen(s) that trigger the immune response in
inflammatory bowel disease. Immune activation in ulcerative colitis is
largely confined to the gastrointestinal tract. The search for the
antigenic trigger has focused on antigens in the intestinal lumen,
which are most likely microbial or dietary. Three major hypotheses
have been proposed: 1) the antigenic triggers are microbial pathogens,
2) the antigenic trigger is a common dietary antigen and 3) the
antigenic trigger is one that is expressed on the patient?s own
cells.?
http://www.fascrs.org/displaycommon.cfm?an=1&subarticlenbr=314
There are no agreed upon immune system ?triggers? for developing UC,
but there are lists of possible culprits. This article has a short
list.
http://en.wikipedia.org/wiki/Ulcerative_colitis
So, in short, you will not likely find anyone to confirm that your
recent diet had anything to do with developing UC, but it is not
necessarily out of the realm of possibility. As you can tell,
determining the ?cause? of UC is all speculation right now.
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DIET FOR UC
As with all of the other aspects of UC, proper diet and nutrition is
an area of debate. It is not surprising to hear that you have been
given so many different opinions. Most of the information on diet for
UC indicates that you should eat a ?balanced? diet. Everything that
I?ve read also says that the primary way to boost and maintain energy
levels is to improve your diet. Establishing a proper diet and
sticking to it should help you feel energized and less ?drained.? Here
is what I found.
This comes from the Crohn?s and Colitis Foundation of America.
?Maintaining proper nutrition is important in the medical management
of ulcerative colitis. Good nutrition is essential in any chronic
disease but especially in this illness, because diarrhea and rectal
bleeding can rob the body of fluids, electrolytes, and nutrients.
Except for restricting milk products in lactose-intolerant patients or
restricting caffeine when severe diarrhea occurs, most
gastroenterologists recommend a well-balanced diet for their patients
with ulcerative colitis. A healthy diet should contain a variety of
foods from all food groups. Meat, fish, poultry, and dairy products
(if tolerated) are sources of protein; bread, cereal, starches,
fruits, and vegetables are sources of carbohydrate; margarine and oils
are sources of fat.?
http://www.ccfa.org/info/about/ucp
This next source reiterates the point that diet should be individualized.
?There is no one single diet or eating plan that will do the trick for
everyone with IBD. Dietary recommendations must be individualized.
They should be tailored just for you -- depending on which disease you
have and what part of your intestine is affected. Furthermore, these
diseases are not static; they change over time, and eating patterns
should reflect those changes. The key point is to strive for a
well-balanced, healthy diet. Healthy eating habits, of course, are
desirable for everyone but they're especially important for people
with IBD.?
http://www.ccfa.org/info/diet?LMI=3.2
Here is a site with ?IBD friendly recipes.?
https://www.kintera.org/site/pp.asp?c=hwKTJbN0JwF&b=460531
This next source is from the University of Virginia Health System. I
will highlight the points made there.
* Diet: There is no one correct diet. Focus on adequate calories,
protein, minerals, and fluid. Discover what works for you. Consult
with a dietician if needs be.
* Fiber: It should be included in any balanced diet, although during a
flare you may want to cut back. 15-25 grams per day is the recommended
amount, but you will need to adjust to your own body. If you have
strictures (narrowing of the intestines), you may need to consume less
fiber.
* Calories and Protein: Maintain a healthy weight by getting adequate
calories. Inflammation caused by UC can increase the amount of protein
you need to eat.
* Vitamins and Minerals: Be sure to take in enough Calcium and Vitamin
D. If you cannot tolerate dairy products you will need to find an
alternative source. Folic acid may be necessary depending upon your
medical regimen. Be sure your doctor monitors your iron levels, since
you can lose blood through the colon.
* Lactose/Dairy: UC patients have more lactose intolerance than the
general population. Avoid dairy products if you cannot tolerate them.
http://www.healthsystem.virginia.edu/internet/digestive-health/nutrition/ucdiet.cfm
One diet that many UC patients have found to be helpful is the
Specific Carbohydrate Diet (SCD). It is illustrated in Elaine
Gottschall's book, ?Breaking the Vicious Cycle: Intestinal Health
through Diet.? A major assumption in this diet is that bacterial and
yeast overgrowth plays a role in UC, so decreasing the ?fuel? for
these organisms is necessary.
?SCD combats bacterial and yeast overgrowth by restricting the energy
they require to live while keeping the host (us) well fed. This
requires eating foods with little or no carbohydrates, or eating foods
that contain monosaccharides which are quickly absorbed by the body. .
. . If you are unsure about a particular food, DO NOT EAT IT. Strict
adherence is necessary to obtain relief from symptoms.?
There is a detailed list of allowed and prohibited foods available on the website.
http://www.scdiet.org/1about/scdwhatis.html
Here is another article about one person?s experience with the SCD.
http://www.consciouschoice.com/1995-98/cc085/hmd085.html
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CANCER RISK
UC does carry with it an increased risk of developing colon cancer.
This risk is higher for individuals with more extensive disease.
?There is a significantly increased risk of colorectal cancer in
patients with ulcerative colitis after 10 years if involvement is
beyond the splenic flexure. Those with only proctitis or
rectosigmoiditis usually have no increased risk. It is recommended
that patients have screening colonoscopies with random biopsies to
look for dysplasia after eight years of disease activity.?
http://en.wikipedia.org/wiki/Ulcerative_colitis
This article from the NIH website discusses the risk of developing
cancer, along with the recommended cancer screening protocols.
?About 5 percent of people with ulcerative colitis develop colon
cancer. The risk of cancer increases with the duration of the disease
and how much the colon has been damaged. For example, if only the
lower colon and rectum are involved, the risk of cancer is no higher
than normal. However, if the entire colon is involved, the risk of
cancer may be as much as 32 times the normal rate.
Sometimes precancerous changes occur in the cells lining the colon.
These changes are called ?dysplasia.? People who have dysplasia are
more likely to develop cancer than those who do not. Doctors look for
signs of dysplasia when doing a colonoscopy or sigmoidoscopy and when
examining tissue removed during these tests.
According to the 2002 updated guidelines for colon cancer screening,
people who have had IBD throughout their colon for at least 8 years
and those who have had IBD in only the left colon for 12 to 15 years
should have a colonoscopy with biopsies every 1 to 2 years to check
for dysplasia. Such screening has not been proven to reduce the risk
of colon cancer, but it may help identify cancer early. These
guidelines were produced by an independent expert panel and endorsed
by numerous organizations, including the American Cancer Society, the
American College of Gastroenterology, the American Society of Colon
and Rectal Surgeons, and the Crohn?s & Colitis Foundation of America.?
http://digestive.niddk.nih.gov/ddiseases/pubs/colitis/index.htm
Here is an excerpt from a Gastroenterology textbook highlighting
similar statistics and information.
?Carcinoma of the colon afflicts patients with ulcerative colitis 7 to
30 times more frequently than it does the general population. The risk
of colon cancer in ulcerative colitis is related to two factors: (1)
duration of the colitis, and (2) extent of colonic involvement. The
risk of colon cancer for patients who have had the disease less than
10 years is low, but this risk steadily increases. The cancer risk for
patients who have had disease activity for 10 to 20 years is 23 times
that of the general population, while a disease duration of more than
20 years is associated with a cancer risk 32 times greater than that
of the general population. The extent of colonic involvement in
colitis also influences the risk of cancer. The incidence of cancer
when ulcerative colitis is limited to the rectum or to the left side
of the colon is much lower than when ulcerative colitis involves the
entire colon.?
http://gastroresource.com/GITextbook/en/chapter10/10-2b.htm
What all of this is saying is that patients with UC need to be checked
more regularly for colon cancer. While screening for it will not
decrease the risk of developing cancer, early detection makes
treatment potentially more successful.
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LEG CRAMPS
Muscle cramping is not a symptom specific to UC and has a number of
possible causes. Many times the exact cause is not determined. If they
are persistent be sure to mention them to your doctor as there are
some possibilities that can be treated.
?The exact cause of a leg cramp is not well understood, but there are
some risk factors that are thought to contribute to this condition:
* Muscle fatigue
* Heavy exercising
* Dehydration
* High weight (not necessarily obesity)
* Electrolyte imbalances?
Here are simple suggestions for preventing and treating muscle cramps:
* Stay hydrated
* Stretch regularly
* Avoid excessive exercise
* Massage the cramped muscle
* Take a warm bath
http://orthopedics.about.com/cs/sprainsstrains/a/legcramp.htm
Here is an article from the Mayo Clinic with general information about
leg cramps. It includes some simple suggestions for making them go
away.
http://www.mayoclinic.com/health/night-leg-cramps/AN00499
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ALTERNATIVE TREATMENTS
There are countless stories and experiences to be found regarding
alternative treatments for UC. Unfortunately, you will not find a lot
of scientific ?evidence? for their use. Traditional medicine has not
yet discovered all of the answers for UC either, so considering
alternative treatments may be beneficial. I have found a few sources
with interesting information and included them here.
Here is an overview of some alternative treatments being used for UC.
* Dietary modification: Be careful of lactose-containing products.
Fresh fruits and vegetables, caffeine, carbonated drinks, and other
sorbitol-containing foods should be avoided in patients with abdominal
cramping or diarrhea.
* Fats and oils: Fish oil can be beneficial.
* Antioxidants: One theory suggests that toxic free radicals left over
from normal physiologic reactions may be a cause of UC or its
symptoms. Vitamins A, C, and E, as well as Coenzyme Q10, Manganese,
and Selenium are all antioxidants that reduce these free radicals.
* Herbals: Coptis detoxifying compounds are used in the Far East.
* Bacterial recolonization: Using probiotics may be useful in
restoring normal intestinal flora.
http://en.wikipedia.org/wiki/Ulcerative_colitis
Here are more suggestions from an About.com article about UC.
* Nutritional supplements: fish oil, folic acid, and butyrate
* Herbs: Aloe vera, calendula, linseed, licorice, marshmallow, myrrh,
and yarrow are all anti-inflammatories. Chamomile, usually used as a
tea, can be useful in controlling symptoms. Peppermint (enteric-coated
capsule form) is also a bowel relaxant. Boswelia (frankincense) may
also reduce inflammation.
http://ibscrohns.about.com/cs/altmeduc/a/herbsuppuc.htm
This next article has other suggestions of supplements and herbs that
can be used in treating UC.
*Probiotics
*Omega-3 Fatty Acids, especially Evening Primrose Oil
*Psyllium seeds
*Chinese herbs (Shu Gan Wan, Mu Xiang Shun Qi Wan, Xiao Yao Wan)
http://www.acupuncture.com/conditions/ulcercolitisc.htm
Here is a site with information on Chinese herbal remedies and
acupuncture used in treating UC.
http://www.damo-qigong.net/colitis.htm
You can find brief testimonials from patients who were helped with
acupuncture here.
http://www.remedyfind.com/treatments/92/2437/
Ultimately, one of the issues with using alternative medical
treatments in a traditional medical system can be summed up by this
physician?s answer to the question, ?Can my UC be helped by
acupuncture??
?To answer your question, many alternative treatments for ulcerative
colitis have been examined in the last few years. These include
special diets, fish oils, fatty acids, herbal medicines and
acupuncture. In most of these cases, the scientific evidence to
support the new therapy is either weak, or there are other side
effects or problems in administrating the therapy that make it
impractical to use.?
http://health.ivillage.com/digestion/colon/0,,6hj3,00.html
As with any other therapy or treatment you may receive, discuss your
thoughts, concerns, and interests with your own physician and then try
to make the best decision that you can for your own personal health.
Every treatment option comes with its own set of risks and benefits.
Weigh them out in your mind and then act on the best one for you. It
sounds like you?re dealing with a lot of discomfort, so it would stand
to reason that trying various things that can?t hurt but could help is
worth it.
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WHAT ELSE?
The Crohn?s and Colitis Foundation of America (CCFA) has a number of
excellent resources on its website. One is a publication about dealing
with the emotional aspects of inflammatory bowel disease. It is worth
the time it takes to read it.
http://www.ccfa.org/frameviewer/?url=/media/pdf/emotional.pdf&LMI=2.1
Learning to deal with a chronic illness can sometimes evoke feelings
of depression. Learning to cope with and manage these feelings will go
a long way in promoting a sense of well-being and health. There are
great articles about this topic available on the CCFA website.
http://www.ccfa.org/living/depression/?LMI=2.2
Here is an article about coping skills for UC patients. It comes from
the Mayo Clinic website.
http://www.mayoclinic.com/health/ulcerative-colitis/DS00598/DSECTION=10
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I hope that you find this information useful! Again, if you have
specific concerns or questions, be sure to discuss them with a
qualified health practitioner that you trust. If you have any need of
further clarification, please let me know how I can help.
Sincerely,
Boquinha-ga
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