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Co-Founder
Here are some words from Dr. David T. Rubin. Thanks goes to www.crohnsandme.com for allowing us to post this.
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.
This is not a substitute for professional medical advice.
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?
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 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.
