IBD and Misdiagnosis: What is the problem?
As I sat home with my three sick girls today an episode of The Doctors blared in the background. The show's topic was self diagnosing and it discussed a beautiful high school girl who had gone undiagnosed with IBD for years. It wasn't until she looked at cells from her own GI tract through a microscope in one of her high school classes that it was determined something was amiss. I am sure many of you can relate to this poor girl's frustration. How hard must it be to go years without an accurate diagnosis simply because her doctors did not look in the right place?
In fact, as many people with IBD have told me, this girl was initially told she had Irritable Bowel Syndrome (IBS) and was being treated for it instead. She mentioned that she felt something more was going on, but from what I could tell she did not pursue it with her doctors. So what is wrong with the medical profession or us as patients, which causes years of misdiagnoses? Honestly, I believe the problem stems from several different areas.
First, as patients, we often fail to give our doctors ALL the information. Maybe we just tell them what we think applies or maybe we simply forget. Do not assume that your doctors are communicating with each other. Get copies of your medical records from your specialist or your previous doctor. Without the entire picture, you might wind up with an accidental misdiagnosis.
If you are diagnosed with something and the treatment does not help you get better: Go back to the doctor! Get a second opinion or see a specialist if you have to. Many people I have talked to are scared to offend their doctor by requesting a second opinion. If that is the case, or should your doctor give you a hard time for getting another opinion, you may need to consider finding a new doctor. A good doctor will not discourage you from getting another opinion.
There are many patients whom I have spoken with that felt they had to fight to be diagnosed. I truly believe a lot of time could be saved if doctors would listen to a patient's gut instinct about their own health. This is also true when it comes to a parent's instinct about a child.
IBD is one of those diseases that can look like many other illnesses. If you have the symptoms and other treatments have failed, ask your doctor if IBD might be the problem. Take a list of your symptoms, how your current treatment is working and a list of any triggers to your appointment. Discuss whether further testing might be useful in determining why you are still in pain and whether a specialist might be a good option for you. Good communication with your doctor is key to getting an accurate diagnosis.