FREQUENTLY ASKED QUESTIONS
My disease has been asymptomatic for years and I live an almost normal life. Should I still have routine evaluations?
Even if you are asymptomatic, it is recommended and very important to have periodic evaluations at a specialized center. The two main reasons are the risk for sudden complications such as bowel obstruction related to scar tissue from previous inflammation and the increased risk for colon cancer, which grows silently and without warning symptoms.
I frequently have extra intestinal manifestations (such as joint pain, skin problems, eye problems, liver problems) that do not respond to the IBD therapy. What should I do?
There are a few studies that have specifically considered the treatment of systemic manifestations of IBD. In general, the therapy is the same of the intestinal disease. Typically, when the condition does not respond to the systemic therapy for IBD, the association between two different, and difficult to treat, diseases (i.e. IBD, arthritis) should be suspected. These cases tend to respond to a combination of immune-suppressants, biologics and/or more experimental therapies (i.e. oxygen therapy, plasmapheresis). Sometimes we use medications which work in unrelated disease processes (i.e. dapsone or pyoderma gangrenosum).
I need almost constant therapy with cortisone. Are there alternatives?
Steroids should not be used long-term due to their associated risks. If there is a constant need for steroids (steroid-dependent disease), then you are a candidate for immune-suppressive therapy or biologic agents. Prolonged use of corticosteroids increases the risk of osteoporosis, diabetes, infections, glaucoma, high blood pressure, and might cause other important metabolic imbalances.
I am a young woman who wants to get pregnant. What are the risks?
The main risks associated with pregnancy are those related to disease activity. If conception occurs during a flare, it is most likely that the disease will remain active for the entire pregnancy, with a high risk for the fetus. This is the reason why we recommend considering pregnancy only when the disease is inactive. It is also important to do everything to keep it that way. Of all the medications used to treat IBD, only methotrexate and thalidomide are clearly contraindicated in pregnancy and you should not get pregnant while on this therapy. As for the other drugs, recent studies seem to indicate that immuno-suppressant medications and biologic agents are safe (category B and C) for pregnancy. Mesalamine, sulfasalazine, and steroids also seem to be safe.
A more controversial issue is breastfeeding, as most drugs cross into breast milk. If you have IBD and would like to get pregnant, consult with your OB/GYN and IBD specialist about potential risks.
Is endoscopy (colonoscopy) or radiological exams required frequently?
Once the diagnosis is made and the extent of the disease has been established by endoscopy, histology and/or radiology, there is no reason to have regular diagnostic procedures. Exceptions are the need for re-staging the disease if there is a discrepancy between e.g. symptoms and fecal/blood tests (especially if the disease has been kept under control for a long time) or if the patient experiences a major relapse and a concomitant issue (e.g. infection) must be ruled out. Still another reason to undergo frequent endoscopic evaluation is the need for colon cancer surveillance after many years of disease affecting the entire colon.
Are my closest relatives at risk of developing the disease? Is there a genetic test to quantify the risk?
Yes, the closest relatives have an increased risk compared to the general population, even if they are completely asymptomatic. There are some genetic tests that can help quantify the risk. However, it should be clear that there is no definite genetic or blood test that can substitute for colonoscopy/histology in making the diagnosis of IBD. First-degree relatives of IBD patients should discuss with the specialist their individual risk to determine the best test available for them.
My doctor states my disease is under control. Yet I continue to have abdominal pain. Why?
It is possible that isolated pain, when not associated with other symptoms such as diarrhea, blood loss, malaise, weight loss, etc., does not reflect disease activity but is due to a problem associated with it (i.e. irritable bowel syndrome, intolerance or food allergy, gastroenteritis). It is very important, however, that this diagnosis is made only after ruling out the reactivation of the disease by your specialist.
My dentist recommended me to take anti-inflammatory agents and antibiotics for a tooth extraction. Are there any contraindications?
Anti-inflammatory medications, such as common aspirin, ibuprofen, or ketoprofen, are contraindicated in active IBD, as it may produce ulcers that may bleed easily. Any type of antibiotics can cause diarrhea even in normal individuals, but the risk is higher in those with IBD. Therefore, before taking these medications, you should consult a specialist.
I take anticoagulants (warfarin) or antiplatelet drugs (aspirin, clopidogrel, etc) for other medical problems. Are these contraindicated?
Antiplatelet agents and anticoagulants are relatively contraindicated in active IBD. In fact, if there are ulcerations, these can bleed uncontrollably if these drugs are taken. Since the use of antiplatelet agents and anticoagulants is indicated in patients with significant medical problems, there are no standard recommendations. Every case has to be analyzed independently and discussed by the different specialists. In the ideal scenario, your IBD should be well controlled and in remission before starting these therapies, but this is not always possible.
Is my life expectancy reduced as compared to others? Will I die from this disease?
Most of the studies conducted this far have shown a greater incidence of several other diseases in the course of IBD, as well as a higher risk of some cancers. Globally, however, very few studies have shown a reduced life expectancy. The majority of patients, if well managed and attentive to the recommendations of the specialist, live a full and productive life in all fields.