Leading
Expert Has Answers on Crohn’s Disease
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.[1]
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
· 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.