7 Misconceptions of IBD
1. IBD is caused by nerves
There is no evidence that emotions or stress cause the development of Crohn’s disease or ulcerative colitis. But once you have the disease, stress may trigger a flare.
IBD gets confused with irritable bowel syndrome (IBS).
Although causal relationship is unclear, mental health problems such as panic disorder, anxiety, depression, and post-traumatic stress disorder (PTSD) are common in people with IBS.
2. Certain personalities are prone to getting IBD
About 50 years ago, it was believed that IBD was part of a group of medical disorders that were characteristic of certain personality traits.
Recent research has shown that this isn’t true.
In fact, during this earlier period, psychoanalysis probably made people’s ulcerative colitis worse because no other treatment was offered.
The underlying cause of IBD is biological, not emotional or psychological.
3. There is nothing more that can be done for you
If you are still sick and you were told that there are no treatments for you, you should see a gastroenterologist who specializes in IBD for another opinion.
Specialists often know about treatments, some of them experimental, that general gastroenterologists don’t know about. That’s understandable: general gastroenterologists are treating many different types of gastrointestinal patients and diseases.
The IBD specialist is focused only on IBD.
4. Some people have both Crohn’s disease and ulcerative colitis
While Crohn’s disease and ulcerative colitis are similar in many ways, you cannot have both at the same time.
5. Surgery needs to be avoided at all costs
The hope is that Crohn’s disease and ulcerative colitis can be controlled with medications.
But knowing when to say “enough is enough” is important.
A patient with ulcerative colitics who is miserable and continues to have serious symptoms may feel a lot better after surgery and a J pouch.
A person with Crohn’s disease may be best served by a resection of some kind.
A temporary ostomy is an option that is may be underutilized for patients with severe perianal disease or rectal Crohn’s that may benefit from complete bowel rest.
6. You should stop taking IBD medications if you’re pregnant
For good reason, there’s limited data from human studies about the of the safety of IBD drugs during pregnancy. No one wants to risk the health of the mother or the child.
But recent research has shown that it is safe for pregnant women to take many of the commonly prescribed IBD medications. Uncontrolled, active IBD is what appears to cause bad outcomes.
Timing the doses of some medications can reduce the chances of any possible risk to the fetus. That’s particularly true of the anti-TNF medications (Remicade, Humira, Cimzia), which are given weeks apart.
Many women find out they are pregnant after the fetus is six- to eight-weeks old. Stopping treatment with the immunomodulators (6MP or azathioprine) at that point in the pregnancy is a bad idea for two reasons. It will not protect the fetus from congenital malformations, and it puts the mother at risk for a flare that could have worse consequences for the pregnancy.
The only medication that absolutely must be stopped prior to conception is methotrexate. The evidence linking methotrexate to birth defects is strong.
7. You can stop medications when you start feeling better
Crohn’s disease and ulcerative colitis are chronic diseases. They often get better with medications.
But if you stop treatment, even if the symptoms have gone away and you are in remission, the chances of the disease flaring up again is high.
There’s solid evidence that people who stop treatment with an immunomodulator (6MP, azathioprine), one of the anti-TNF medications (Remicade, Humira, Cimzia), or methotrexate will have symptoms again.
Patients with ulcerative colitis who stop treatment with one of the 5-ASA medications generally flare against in 12-18 months.
The bottom line is that it’s important to continue with your medication even if you are free of symptoms.