David T. Rubin M.D., Assistant Professor of Medicine at the
University of Chicago Pritzker School of Medicine and leading
authority in Crohn's disease and ulcerative colitis is working with
www.CrohnsandMe.com to help people understand the disease and how to
best manage it. Below, read Dr. Rubin's answers to some commonly
asked questions about Crohn's disease.
This is not a substitute for professional medical advice. For the
most accurate personal medical care, including decisions about
medications and other treatment options, you should always consult
your physician.
What is Crohn's disease?
What causes Crohn's disease?
Are there any triggers for people who are already living with the
disease?
Is the disease hereditary?
How do I treat Crohn's disease?
Do I need to take my medication if I feel healthy?
How can I limit the impact of Crohn's disease on my daily life
with diet and lifestyle choices?
Does diet impact Crohn's?
How does stress impact my disease?
How do I explain my condition and special needs to co-workers and
teachers?
Can I still travel with Crohn's disease?
Where can I find additional information on living with Crohn's
disease?
What is Crohn's disease?
Crohn's disease is an autoimmune condition of the intestinal tract.
While the exact cause of Crohn's disease is unknown, it is believed
that Crohn's disease occurs due to a loss of control of the immune
system of our intestinal tract, which consists of all the organs
involved in digestion from the mouth to the anus.
What causes Crohn's disease?
In healthy individuals, the intestine routinely becomes mildly
inflamed when exposed to food and bacteria, as a response to these
agents and to allow your body to absorb nutrients, but not become
infected. In the healthy person, the inflammation response is then
turned off and the bowel or intestinal tract returns to its resting
state.
In people who are susceptible to Crohn's disease, it is believed
that some element of the environment triggers an immune response
that loses control. One way to think about this is that the immune
system of the gut has become "overactive" and has either lost
the "off switch" or is alternatively stuck in the "on" position.
Another possible explanation is that the body has lost the ability
to distinguish between "self" and the environment. There are
theories about Crohn's disease that suggest it is caused by
infections or that there is a specific organism that is at the heart
of most patients' disease. However, it is believed that while
infections may trigger the onset of the disease in some people, it
is likely more complicated than that.
Are there any triggers for people who are already living with the
disease?
A strong environmental "trigger" of Crohn's disease is smoking.
People with Crohn's disease who smoke cigarettes and tobacco have
more flares than those who do not smoke. In addition, it is known
that people with Crohn's disease who smoke have a more aggressive
disease that is more difficult to treat and much more likely to
return after surgery. It is, therefore, extremely important that
people who have Crohn's disease and smoke enroll in smoking
cessation programs. It is also important that people with Crohn's
disease who do not smoke never start. People with Crohn's disease
should also avoid anti-inflammatory medicines like ibuprofen or
prolonged use of aspirin, which may also trigger a relapse of the
disease.
Is the disease hereditary?
About 10 to 15 percent of people with Crohn's disease also have a
family member with Crohn's disease or another inflammatory bowel
condition. Crohn's disease is known as a complex genetic disorder,
because there are multiple genes that contribute to the disease
expression, and interact with the environment to produce the
disease. Those who have a greater genetic component to their
disease may develop the disease at an earlier age, while those who
have less of a genetic component may develop the disease after a
more intense or prolonged environmental exposure.
How do I treat Crohn's disease?
There are a variety of therapies which help treat and manage Crohn's
disease. It is best to consult with your own physician about the
best treatments for your individual needs.
In general, the treatment of Crohn's disease is defined with
specific goals; the first goal being remission and is defined by the
absence of symptoms that wake you from sleep, the absence of blood
in your stool, the return to normal nutritional and laboratory
values, and being removed from corticosteroids. Remission means
that the patient is feeling healthy and well.
The second goal is known as maintenance, meaning the absence of
flares of the disease. It is extremely important that once the
diagnosis of Crohn's disease is confirmed, an adequate maintenance
plan is put into effect. This should involve safe and effective
therapies that people are willing to take and stay on.
Do I need to take my medication if I feel healthy?
A way to encourage patient adherence to therapy is through
scheduling regular visits with a gastroenterologist and by educating
patients about the importance of maintenance therapy.
There is scientific evidence that those who do not take their
therapies are more likely to require surgery, more likely to have
flares of their disease and even more likely to end up in the
hospital.
In addition, it is believed that when the disease is under poor
control, it becomes harder to get it under control later. This is
probably due to the progression of the inflammation to involve more
tissue and potentially cause complications of infections or even
bowel obstructions.
It is extremely important to have a very open and ongoing dialogue
with your physician about which therapies work and whether you are
willing and able to take them. This even includes a discussion about
whether you can afford your medications.
How can I limit the impact of Crohn's disease on my daily life with
diet and lifestyle choices?
I cannot stress how important it is that people with Crohn's disease
do not smoke cigarettes. Eliminating that factor from your life may
have a more positive impact on disease control and your overall
health than any medications that we can provide. In addition, I
highly recommend regularly scheduled visits with your doctor even
when you are feeling well. These so-called "healthy visits" offer an
opportunity for you to review your disease state, to discuss
advances in the field, to emphasize and remind you about adherence
to therapy, and to update your doctor about your needs and hopes for
the future of your disease management.
In addition, it is extremely important to plan ahead and understand
the limits that the disease may have on you. If you are not feeling
well and you have an important social event coming up, or a trip
planned, you should talk to your doctor early rather than waiting
for the disease to spontaneously remit. Such "wishful thinking"
often leads to more complications and we know that, when we
intervene early when there are signs of the disease acting up, it
can result in much better outcomes.
Does diet impact Crohn's?
Although it makes perfect sense that foods can cause more symptoms
when your Crohn's disease is active, and certainly each individual
is aware of specific foods that may make them feel worse, we do not
have evidence that any foods drive the inflammation of Crohn's
disease or, for that matter, control the inflammation of Crohn's
disease. Nonetheless, understanding whether you are lactose
intolerant, or whether you have other problems with specific foods,
is important so that you can avoid them and keep yourself healthy.
A general rule that applies to all chronic diseases and healthy
living is moderation. This should include your choice of diet, your
exercise, getting healthy sleep, and avoiding stress.
How does stress impact my disease?
Although there is no confirmatory evidence that stress drives
Crohn's disease flares, I certainly appreciate that many of the
people I treat believe that stress does aggravate their disease and
obviously when people are stressed they have poor sleep and eating
habits which may contribute to additional gastrointestinal symptoms.
Taking control of your life and eliminating the avoidable stressors
is very important.
How do I explain my condition and special needs to co-workers and
teachers?
It can be very difficult to explain this disease to others and to
anticipate their response. In the ideal situation, a co-worker or
teacher would know what Crohn's disease is and be willing to
accommodate your need for more frequent trips to the bathroom when
the disease is more active. They should also understand your need
for healthy visits to the doctor and when you are not feeling well,
more urgent visits to the doctor.
However, most people have heard of Crohn's disease but are often
confused or have misperceptions of this disease. Therefore, I highly
recommend using simple brochures and informational tools to educate
your employer or your teacher about the disease. I recognize that
some people have fear of employment discrimination. However, the
Family Medical Leave Act (FMLA) protects people and will allow you
to be absent from work for scheduled medical visits or treatments.
Can I still travel with Crohn's disease?
Our goal for managing Crohn's disease is that you should be able to
do anything that you want in your life. This includes travel.
However, when you travel there are some precautions that are worth
taking.
First, discuss your trip and plans with your doctor. If you are
traveling somewhere travelers diarrhea is endemic and common (like
Mexico), then you should plan to take preventative measures against
traveler's diarrhea. We believe that people who are in remission
from Crohn's disease and have an infection when traveling, are more
likely to have a flare and have more problems.
You should plan to have enough of your medications with you so
that you will be able to take your maintenance therapy during your
trip and have extra medications with you, in case you drop or lose a
dose. You should have your rescue medications available and plan to
have symptomatic therapy with you.
You should always carry your medications in your carry-on luggage
rather than checked bags, in the event the luggage is lost. These
days, unfortunately, you will want to ensure that all of your
prescription medications clearly have your name on them and will
probably need a letter from your doctor outlining a need for your
medications to ensure that the Transportation Security
Administration will allow you to carry the medicines on the airplane.
If you have been or are on steroids, it would be very helpful to
discuss with your doctor the possibility that you may need to take
an extra dose or adjust it when traveling long distances. This is
especially true if you travel to a different time zone, in which
case, you may need to adjust the timing of your dosages to account
for jet lag.
Discussions with your doctor can be most helpful in these
circumstances.
Where can I find additional information on living with Crohn's
disease?
For more information on Crohn's disease, you can explore
www.CrohnsandMe.com, which provides timely information about
managing the disease in all areas of life and includes the stories
of individuals living and thriving with Crohn's disease and the
doctors who treat them.
In addition, I highly recommend the Crohn's and Colitis Foundation
of America Web site.