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Living in the "new normal" with inflammatory bowel disease

#coronavirus #crohns #inflammatory bowel disease #newnormal #ulcerative colitis #workfromhome Apr 21, 2021


For the past year, as a country, the majority of us have been socially isolating to reduce exposure to COVID-19.   I remember thinking at the beginning of all of this that we would hunker down for a few months and “flatten the curve.”  Then, I imagined, we would take our masks off and go back to our normal routines.  Never could I have predicted that this virus would change so fundamentally the way I think about and operate in my daily life.   


We have all experienced the pandemic differently.  It has been devastating to all of us- but particularly to those who have lost work, lost a loved one or have had complications related to COVID-19 infection.    As someone with an autoimmune disease on immune suppressive medications, it has been easy to become focused on the ways that this virus has made my life difficult.  I think about the health risks of COVID-19 for myself and my patients and I am angry and scared, even as we move forward with mass vaccination. 


And while the virus has caused so much destruction in its wake, many friends and patients with inflammatory bowel disease have told me that the pandemic has actually also provided them a great sense of relief. 


The relief of being able to work at home with close access to bathroom, heating pad, medications.   


The relief of ditching the 45 minute commute punctuated with multiple bathroom stops during difficult flares.  


The relief of not having to explain to friends or family the food they order at a restaurant or why they need to sit on the aisle at the movie theater.  


The relief of telemedicine appointments.   


The relief of not having to search out every single bathroom in a new space. 


What might seem small- just the knowledge that you have access to the bathroom- can change how you feel.  When you lift that anxiety, the symptoms may still be there, but often they are not as intense and they certainly feel more manageable.  


It’s hard to talk about with other people,  because telling people that some parts of the pandemic have actually been easier for me can feel insensitive.  But as we ease out of this pandemic, instead of fearing the loss of this security, I am asking myself how I can take pieces of my "new normal" with me moving forward.  


I will embrace the changes in my life and work habits that have supported me during this pandemic.   


I will trust myself to be my own best advocate for my future.  


I will find ways to create the comfort for myself that I need to thrive.


What will you take with you?


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The Power of Belief in IBD

In my medical specialty treating inflammatory bowel disease, the placebo effect has been a thorn in the side of doctors.  I have called it the placebo “problem.”

In a clinical trial, when we are testing a new medication to see if it will be effective, we compare it to a “placebo” or fake medication (sometimes referred to as a “sugar pill”).    The placebo effect occurs when patients receiving the placebo experience a benefit.   

My colleagues and I look at the data published in clinical trials and see the clear improvement in patients getting both real drug and placebo as a problem.  It makes it hard to interpret their results  if many patients are getting better when they are not receiving the real drug.  In trials for inflammatory bowel disease, placebo rates for symptom response have historically been between 20-40%.  While accounting for the placebo effect is critical to know whether a drug is truly effective, I was ignoring an equally exciting and important part of what these studies show.  

Over the past few years, I have begun to look at the placebo response with curiosity and excitement.  If patients with Crohn’s disease and ulcerative colitis can objectively feel better by just believing that this is possible, than why are we not harnessing the power of the mind more and learning to do it better?  We may not even have to “trick” ourselves into believing we are getting a real medication.  Studies have shown that even when people know they are getting a placebo, they may still experience improvement in symptoms. 

While there is clearly a very strong mind-body connection in IBD, I think we have to be careful when we recommend harnessing the power of the mind to manage disease.  The placebo response as it relates to symptoms is high, but is much lower when we look at more objective markers of inflammation such as blood inflammatory markers (CRP, ESR), stool inflammatory markers (calprotectin) and healing of the tissues seen on colonoscopy.  Doctors, including myself, become concerned that patients will take this to mean that they should work on mindset instead of taking traditional medications.  We worry that our patients might then suffer long-term complications of undertreating their disease.  A better approach is to capture as much benefit as possible using the right medications and the right mindset tools.  

In medicine, we often tell patients that they are likely to have a 10-15% response rate to a certain drug.  That is what we call the delta- or difference- between the response of the patients who received drug and those who received placebo in a clinical trial.  So, for instance, if 20% of subjects receiving placebo responded to a medication and 35% responded to a drug, the drug’s overall efficacy (the difference) is 15%.  When I quote these rates of response with medications, my patients often become discouraged at the low likelihood that they will get better.  They may not even want to take a chance on a medication that might really work for them.  However, when we combine the medication and placebo response, things look much better. The full effect is 35%, not 15%.

So what if I told you that there was something you could do that would make your current medicines twice as effective at reducing your symptoms?  What if I also told you it had no traditional medication side effects (unless you count better relationships, increased productivity and less pain)? 

I think of the addition of the placebo response to traditional therapy as a starting place.  There are then ways that we can train the brain to be even more efficient.   Coaching and mindset tools are designed to help us work on believing that getting better is not only possible but inevitable.  Then out of that place of determination, we take the actions we need to help the body heal.

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