The following list of suggestions was prepared by a longtime patient of
ulcerative colitis. They are recommendations that he has found helpful in
the control of his condition, and it is hoped that others, too, will find
assistance with them. Although this disease is incurable, it can be
controlled, and many things can be done to make the patient's life more
comfortable. These are some of them.
Finally, do see your doctor as often as he recommends if you have good
health insurance. Be open to having a colonoscopy when he advises it,
since he can check for degree of inflammation, polyps, and cancer
(although the latter is quite rare even in UC patients). Also, suggest
that he do also an endoscopy (exam of the throat, stomach, and small
intestine) at the same time. He can check for esophageal damage,
infections or ulcers in the stomach, and Celiac disease, the severe
allergy to wheat and gluten that is revealed by a tissue biopsy of the
small intestine. The latter disease is occasionally associated with UC.
- First, one of the comforting things that help newly diagnosed
people to feel easier about their state is that life is not perfect for
anyone. No one passes through this arduous voyage called life without
being touched by good things and unfortunate things. Our condition is
definitely among the latter, but it can be dealt with and in fact
reasonably held in check if one follows a very disciplined life.
- Don't be depressed by the fact that UC cannot be cured. True, it is
hereditary and therfore will probably always remain incurable, because
genetic engineering (alteration of defective genes) thus far is not
possible for elimination of most human illness. The summer, 2003, issue
of Foundation Focus, p. 25, mentions that
"geneticists believe that multiple genes are
involved in IBD. Researchers
must now hunt down the other genes that may play a role in IBD. They
also must determine how these genes function in relation to the natural
environment of the gut."
Further, the fall, 2004 issue, p. 6, of Under the Microscope-Research
News Bulletin from the Crohn's & Colitis Foundation of America states
"A study of 272 patients with ulcerative
colitis and 247 controls identified
specific genetic mutations that predicted severe disease in ulcerative
colitis. In additon, other investigators discovered a link between a
mutated gene (MDR-l) and ulcerative colitis."
However, to suspect and identify this genetic problem is one thing; to
correct the defective aspect of the genes is quite another.
- Since UC is genetic, it is probably wise for its sufferers to remain
childless. After all, no one wants to pass along such a serious condition
to a descendant. In my own family, one of my grandfathers had UC, his
wife had diverticulitis, Dad had hemorrhoids, Mom has Crohn's, and I, of
- The theory that makes the most sense to me about the cause for UC is
that the lining of the colon is somehow allergic to itself, as determined
by heredity. In a way, it is trying to digest itself; therefore,
inflammation develops. The body's immune system evidently is overly
active, as in the case of nasal allergies. Logically and unfortunately,
many patients of UC have severe allergies, also.
The action of Azathiopriine or Imuran, a powerful drug that is used to
prevent rejection of transplanted organs, is often used to treat UC. Its
action is to reduce the strength of the immune system. Thus, the theory
that an overactive immune system (doubtless a genetic defect), as
mentioned above, is responsible for UC is indeed logical.
- It is very important for sufferers of UC to realize that they must
live a life much more disciplined than the average person. This is
especially difficult or young men who want to prove their machismo by
doing everything and eating everything. This is simply not possible with
UC, and its sufferers must live a quiet, somewhat uneventful, perhaps
artistic life, surrounded as much as possible by positive karma.
Strenuous physical activity like long distance running and competitive,
contact sports is simply not possible with this condition.
In my youth, I knew a young man with UC who spent his life doing lengthy
motocycle trips around the country and eating massive amounts of comida
mexicana. Of course, his condition was quickly out of control. He
refused to listen to his doctor's recommendations for a bland diet and
subdued activity and was forced to have his colon removed at the age of
26. He was not happy about it.
- In my experience the single most important factor in controlling UC is
DIET. There is nothing so important. There are many good things that we
can eat safely, but certain foods must be avoided at all times, even
during periods of remission. Remember that eating the wrong thing and
then using medications to resolve the inflammation they cause is not a
good syndrome because of the negative side effects of the medications.
One of my doctors once told me, "Take as little medication as possible to
control your condition, and follow your diet above all."
- Some doctors today say that UC sufferers can eat whatever they want
because the partially digested food that enters the colon (called "chyme")
is relatively generic in nature, regardless of what foods it consists.
This is not true! My lengthy experience with this condition has shown
that several foods must always be avoided. Such avoidance can
dramatically improve our health. Here are some advisements:
- All raw vegetables, particularly lettuce and cabbage, are
highly fibrous and therefore very irritating to the colon. Avoid them at
all times. America's obsession with the high fiber diet is exactly the
wrong thing for us. On the other hand, softly steamed vegetables of any
kind (except corn because it is so fibrous) can be eaten in abundance and
have wonderful nutrition.
- All raw fruits except one should be avoided. Like raw vegetables,
they are too fibrous and acidic for us and should always be off limits. A
raw apple, for instance, has more acid than a grapefruit and only a little
less than battery acid! On the other hand, baked apples digest
beautifully. The one raw fruit that is well tolerated is bananas
(particularly very ripe ones), because they have no acid and possess less
fiber than other fruits. In fact, they are soothing. Other fruits like
peaches, pears, fruit cocktail, etc. can be enjoyed if canned and thus
cooked. Canned pears (in natural fruit juices, not sugery syrups) are
quite beneficial for UC. Also, a few drops of lemon juice in water every
day have a soothing effect on the colon.
All raw melons like watermelon and cantaloupe are very irritating for
this condition and are off limits.
- Carbohydrates (breads, cereals, pastas) are fine for the condition,
but avoid rough "seven-grain" breads and other whole wheat products like
rye bread and whole wheat muffins. However, an occasional bran muffin is
generally fine. Avoid dry, prepared cereals like Grape-Nuts (which are
akin to eating gravel, although delicious gravel!), and go for the softly
cooked cereals like Cream of Rice. Avoid Cream of Wheat, since it has
added iron, which irritates the colon.
- All meats and poultry are excellent for UC and provide a great deal of
nutrition. Many dieticians recommend the avoidance of beef and pork, but
actually they are beneficial for UC, as is any kind of seafood. Of
course, shellfish has harmful cholesterol, but seafood without a shell
like halibut, tuna, and salmon digest very well and provide soothing fish
oils for the colon.
- Avoid milk and cottage cheese of any kind. They are highly irritating
to the colon. However, solid cheeses and ice cream digest beautifully and
provide good nutrition. Ice cream has no irritating effect since it is
prepared in a heating process that destroys the proteins present in raw
milk that cause colonic irritation. In fact, ice cream is actually quite
soothing for UC.
- Never eat nuts or seeds which are frequently present in certain breads
and desserts. Nuts provide good protein for those who can digest them,
but we cannot. Seeds really provide little nutrition, and like nuts, are
very difficult to digest. Popcorn is even more harmful than seeds or nuts
and should never be eaten. The smell of fresh popcorn in the theater is
tempting, but it is one of most difficult foods to digest and should be
- Regarding spices for foods, avoid any kind of pepper (cayenne, black,
etc.) or any generally spicy food like Indian dishes prepared with curry,
but salt, onion powder, dill, lemon, orange, nutmeg, cinnamon, and many
other mild spices are fine for the condition.
- Always eat slowly and chew your food thoroughly. This breaks down the
fibrous material which can irritate digestion and reduces the potential
problem of regurgitation.
- In regard to beverages, herbal teas, caffeine-free teas, water, and
some juices like apple, cranberry, and raspberry are well tolerated.
Only 100% juices should be used, not the "juice cocktails," which have
only a small percentage of real juice. No more than one glass of juice
should be drunk in a day's time to avoid problems. Citrus juices like
orange and grapefruit usually are not tolerated because of their acidity,
although sometimes a small glass of orange juice thinned with half water
may be tolerated at the end of a meal. An occasional lemonade also may be
Of course, no alcohol at any time, including wine and beer, should ever
be consumed. The process of fermentation that is required to produce
alcohol is a process of spoilage, and we must face the fact that all
alcohol is bad for the body. It accelerates aging, is negative for
everyone's digestion, and, naturally, harms the liver. The studies that
claim that some wine is good for the heart are flawed and questionable.
The proof of this is that each study says at its conclusion, "If you don't
presently drink, don't start!"
Coffee, whether caffeinated or decaffeinated, should be shunned. It is
an intestinal irritant and, further, has no nutritional value.
Do drink lots of water every day, particularly if you are taking
Azulfadine. This helps to flush the harmful effects of this medication
and any others from your system.
- Regarding all foods and beverages, it is important not to eat or drink
anything simply because it's convenient and you're away from home and
cannot prepare the appropriate items. Just wait until you're in a
position to prepare or find the proper sustenance. Whether at home or
away, it's always best to avoid "dietary indiscretions!"
- It is advisable to take a multivitamin tablet each day or perhaps a
number of individual vitamin pills like B-complex, C, A-D combination, and
calcium. But be careful to avoid vitamin tablets with added minerals.
Although zinc can be tolerated by UC patients, iron, iodine, and magnesium
do cause colonic irritation and should be avoided. Magnesium is often
added to calcium tablets to make them absorb better, but such a
combination must not be taken. Instead, choose a calcium tablet with
only calcium or perhaps with added vitamin D, which also helps in
Many patients find that two Omega-3 Fish Oil tablets per day can be
helpful for UC.
- There is much to be said about exercise. Moderate weight training and
cardiovascular exercises are very beneficial for UC, unless the patient is
dealing with a flare-up. But when the inflammation improves, a regular
exercise program should be resumed. A good weekly regimen to follow is
to do weight training three days a week and cardiovascular training such
as walking, outdoor biking, use of a stationary bike or a ski machine
three other days of the week. The duration per day is appropriately
about 60-90 minutes. One day off per week is beneficial.
All types of exercises that are reasonable in nature are good for this
condition except the following:
- The ab machines, "crunches," and sit-ups that many people
use to create the great "six-pack" look in the abdominal area are
exercises that should always be avoided. They can cause immediate
inflammation in the colon because they crush the colonic tissue together.
On the positive side, since UC tends to keep people thin, most of its
sufferers do not develop significant abdominal weight, but having the
really buff tummy look is not possible since these types of exercises
cannot safely be done.
- Avoid long distance marathons or lengthy runs, particularly on
concrete and ground surfaces. These types of exercises are simply too
demanding, and the pounding on hard surfaces shakes and irritates the
Moderate runs on the carpeted surfaces of a gym track are usually well
One exercise that is particularly beneficial for UC is the standing
pull-down. Stand in front of a horizontal bar, draw it slowly down to
chest height, then let it return slowly upward to its resting point. This
exercises tightens the stomach area but does not produce irritation like
crunches and sit-ups and actually helps UC.
- Never deny the urge to evacuate the colon. The colonic contents are
waste products and should be eliminated as quickly as possible. We can
eliminate many problems with excess gas, bloating, and backups.
- Seek a conflict-free home environment. Live with pleasant people,
family or mates or alone. Be pleasant and positive yourself, and you will
find that most people will respond with like feelings. If they don't,
- The work environment should be kept as free of stress as possible.
One way to avoid stress is to be well organized and timely with your
assignments and duties. Don't procrastinate; accomplish your necessary
activities early and with good organization, and maintain agreeable,
cooperative relationships with your co-workers.
- Sleeping position can influence how we feel. The least irritating
position for UC is lying on the left side with the legs drawn up toward
the stomach. When lying on the back, tilt the head slightly to the left,
not to the right. You will find that you feel better!
- If you must stand a lot, as in the case of teachers, barbers,
cashiers, etc., shift your weight to the right foot. This eliminates
stress on the left side of the colon where our problems usually exist.
- It is very important that the UC sufferer not become overtired. Rest
is a very significant factor in the treatment of UC. It helps the
medications work better, and it reduces the need for so many
In some cases, one's condition may be so difficult that a full-time job
is out of the question. In these cases, a Social Security disability
should be sought. It is invaluable in supplementing the income of someone
who is simply too weak to work a usual 8-5 schedule. If the patient is
able to secure such a disability, he can then devote more of his life to
restorative rest. Additionally, the frequently frail, vulnerable
appearance of UC sufferers makes it difficult for them even to find
full-time employment. After all, companies want healthy workers to fill
their job openings. In these cases, the Social Security disability would
give needed supplement to the patient's income.
As discussed in the winter, 2005 issue of "Take Charge," on November 30,
2004, the current administration signed into law the "Research Review
Act," a bill that deals with Crohn's disease and ulcerative colitis. This
bill seeks to identify the prevalence of these two diseases in America,
and it will study the degree to which Medicare and Medicaid cover
treatments needed by the sufferers of these diseases. Further, it will
report on the challenges that IBD patients find when they apply for Social
Security Disability. There will be recommendations for improving
disability coverage for these patients.
At present, the process for applying for any Social Security disability
is lengthy and complex. The many forms to be filled out are surprisingly
lengthy, and even to apply for a disability requires that one earn an
absurdly low salary. A patient might be in a full-time job (whose salary
would not qualify for disability) and might believe that it is too much
effort for him, considering his illness. However, making an income above
the minimum would exempt him from even applying. Besides, the vast
majority of claims are denied after a long wait, and the patient must
fight on after the denial with an appeal. He will probably have to use a
lawyer to assist in the process. Even then, many legitimate claims are
It is hoped that this new bill will reduce the paperwork needed to make
application for a disability and the time required to await a decision.
Further, a higher salary should be allowed to make application. Most
importantly, the Social Security Administration must be educated to the
fact that most UC and Crohn's patients simply do not have the energy to
deal with the demands of a full-time job and should be helped with a
disability. The SS Administration must be far more open in actually
granting these patients the disability payments that they need.
- A factor that is often associated with UC is diminished self-esteem
and possibly depression. The fact that the condition is incurable and so
recurrent can make one feel less confident in dealing with interpersonal
relationships and work situations. The fact that UC ematiates the body
during flare-ups since food is not digested properly further affects the
ego, particularly during youth when physical adequacy is so important.
An effective way to counteract these psychological factors is to seek
family members and mates who are supportive and positive in their outlook
and who will give the UC sufferer sincere support with his or her
- UC sufferers have great difficulty adjusting to significant changes in
their lives, particularly the loss of family members who have been very
supportive of their health problem. We usually settle into a routine of
daily activities, job-related duties, family settings, etc., and find it
difficult to adjust to changes in them. Again, the support of family
members is essential in helping the patient to make these necessary
psychological adjustments when change is unavoidable.
- Regarding medications for UC, much can be said. I personally favor
Azulfadine among all the oral medicines. It does have many side effects
(headache, nausea, ringing in the ears, slight hearing loss, a small
reduction in energy level, a bit of burning of the eyes, and intolerance
to sunlight), but overall it is the least toxic that I have found. Always
take the "enterically coated" tablets, as this type reduces the side
effects (in particular, the nausea). Azulfadine tabs cost less than any
other UC medication, perhaps because they've been in production longer
than the others.
Pentasa tablets heal the colon more completely than Azulfadine and do not
make the patient intolerant to the sun but cause a very annoying
peripheral neuropathy-numbness and tingling in the lips, tongue, and
limbs, which persists long after the medication is stopped.
Asacol tablets cause severe respiratory infections like bronchitis and
are inadvisable. Also, they are far more costly than Azulfadine.
A new drug called Colaza has just been introduced. I have not tried it,
but my doctor says that is promising.
Azathiaprine (Imuran), previously mentioned, is a very potent drug
sometimes used in the treatment of UC. It reduces the strength of the
immune system, as discussed on page 2, and remember that it is thought
that an overly active immune system (as influenced by heredity) is part or
all of the cause of UC. The secondary effects are unpleasant and include
severe headache, a tendency to develop respiratory infections, weakness,
and tiredness. However, the drug is highly effective, and the side
effects disappear a few months after the medication is discontinued.
A new medication, currently in clinical trials, works similarly to
Azathia-prine in reducing an overactive immune system. It is called
Daclizumab or Zenapax. Like Azathiaprine, it is used also to prevent
rejection of transplanted kidneys. To join the trials for Daclizumab,
just call 1-800-7720482, or visit www.prospectstudy.com.
The costly Rowasa enemas are very helpful for topical treatment of
inflammation. They are wonderfully soothing and help the patient to sleep
better, particially due to the potassium they contain. As with Pentasa
tablets, their major side effect is neuropathy. It is better to use about
1/3 of the enema each evening before retiring rather than the entire
enema. It is less expensive and is expelled much less frequently. The
medication should be retained in the colon all night if possible for
Avoid any medications with cortisone or steroids such as oral
cortisteroids or Cortenema. These products are not really helpful in
reducing inflammation, and like all cortisone and steroid preparations,
can cause a devastating psycho-logical condition known as "steroid
psychosis." The symptoms are severe anxiety attacks and must be treated
with tranquilizers. The psychosis can last for years after the medication
These tests require about a day's preparation that is somewhat
unpleasant, but the tests themselves are done with full anesthetic and
involve little or no discomfort.
In summation, we must realize that the human body is an excessively
complicated and very delicate machine. If we had the power, we would
make it much simpler and much stronger, but as far as we know, no new,
improved model is coming out anytime soon! Ulcerative colitis patients
have a further delicacy that must be dealt with for their lifetime.
But remember that with this disease, as with any chronic illness, our
goal is to achieve a relatively symptom-free life, that is, a lasting
remission without disfiguring, painful surgery or large amounts of
troublesome medications. This objective is achievable by most patients if
they are willing to follow the disci-plinied life outlined in these
pages. In this way they can look to the future with hope and optimism.
As one of my doctors once said, "The best way to have a long, happy life
is to have a chronic health problem and take care of it properly." Good