IBD Is Different For Everyone, Even In The Same Family.


Unknown-1As an IBD advocate I find myself talking about Crohn’s disease and ulcerative colitis all the time.  Over the past few years I’ve been amazed at how many families have multiple members with an IBD.  My family has two members who are affected by Crohn’s disease.  Not only do I have Crohn’s, but my older brother has Crohn’s as well.

Still IBD manifests itself in different ways in each patient.  Yes there are similarities in the symptoms that patients have, but there are also many differences too.  For instance I know some people who aren’t able to go near fast food and others say they digest it better than anything else.  Other patients are fine to have alcohol and others can’t drink any of it.  The general symptoms of IBD are the same, but all patients have different ones and also in different severities.  On top of the general symptoms, there are literally countless ways that these diseases can affect a person.

Take the two cases in my family.  My brother and I couldn’t have two cases of Crohn’s that are more different from each other.  Many people including me call my Crohn’s severe.  I’ve had over 30 surgeries, countless hospitals stays and many medications haven’t worked for me.  Yet my brother has what could be considered a mild to moderate case.  He has only been in the hospital a few times, had one surgery and his medication is working great for him.

You would think that since my brother and I have the same genetics that we would have similar difficulties with Crohn’s, but this is not the case.   This is why I tell everyone that IBD is different for everyone.  No diet works for everyone, no eastern medicines work for everyone and not all modern medications work for everyone.  For example, my brother has had great success on his biologic.  When I try the same biologic, I have a severe reaction to it.  It works for him, but causes me to turn red and not be able to breathe.

This disease isn’t like so many others.  We don’t have symptoms and proven ways to treat them.  There are so many different ways to treat them, so many natural ways that people are talking about, so many diets which claim to heal the gut, so many drugs which we are told will help, the CCFA even uses the word “cure” for surgery in ulcerative colitis patients.

The point I’m getting at is that all patients are different and the gastrointestinal system is an extremely complicated one in the human body.  We all have to do our research and find what words best for us personally.  Don’t just think that what might have worked for one person will work for you.  If that were the case I would have done exactly what my brother did.  Try everything you feel comfortable trying, keep track of how it might help or not, and create a combination of treatments which you believe will work for you.

Never Stay Quiet!

To help others with Crohn’s disease, ulcerative colitis and ostomies, please click the link below and make a contribution to the Intense Intestines Foundation which will allow us to continue our mission.

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One thought on “IBD Is Different For Everyone, Even In The Same Family.

  1. Very well stated! Hi:) My name is Lenore Shapiro and my daughter has Crohns. She was diagnosed at 12 and is now 24. You can read her story on our website nibdinkids.com and FB The Foundation for NIBD. We are a non profit that supports and raises awareness for nutrition research for juvenile IBD. Let’s change the way we first look at this devastating disease. We also help adults, but early intervention is one of our goals in educating people in the importance of proper nutrition. We are also a national resource link for CCFA under kids and teens. Thank you:)

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