10 Things I Wish People Knew About IBD

Crohn’s Disease, Ulcerative Colitis and any form of Inflammatory Bowel Disease (IBD) is widely misunderstood due to lack of awareness. 

There are so many aspects to IBD that most are unaware of.

And since May 19^th was World IBD Day, I have collaborated with another fellow Crohnie and blogger, Nathalie Begin from Gutsy Feeling, to come up with a list of 10 things we wish people knew about IBD. 

Below you will find the 6-10 things I wish people knew, and if you CLICK HERE you will see Gutsy Feeling’s 1-5 things!

10 Things I wish people knew about IBD:

6. Mental Health takes a big hit.

A large misconception about IBD is that it only effects your intestines.  Boy is that so wrong!  Unfortunately, this disease effects the entire body in horrific and unimaginable ways.  One way that it is incredibly crippling is with mental health. 

Depression is a real symptom of IBD, as well as anxiety and panic attacks.  It is no secret that more than half of your Serotonin is made in your gut.  Serotonin is the “happy” chemical of your brain.  Therefore, when someone’s gut is malfunctioning and diseased, it makes total sense that depression becomes prevalent.  The creation of Serotonin and other important chemicals for brain function are handicapped.  So be mindful and understand that anyone suffering with IBD is also enduring mental health challenges.

I know personally, my mental health would suffer majorly whenever I was in a bad flare.  Depression, anxiety and panic attacks plagued me.  However, once I got my flare under control, those symptoms went away. 

7. IBD medications can be crippling.

What most people forget about patients with IBD, is that the medications prescribed to treat the disease can be incredibly crippling themselves.  As we all can relate, prescription drugs can be quite the double-edged sword.  They may work wonderfully at relieving one symptom, but simultaneously they wreak havoc in other areas of the body.  This is especially true with many IBD medications.

For example, anyone who suffers from IBD has been prescribed the steroid Prednisone.  It is the text book therapy given in order to zap inflammation of the gut quickly.  However, Prednisone is not nicknamed “The Devil’s Tik-Tak” for nothing.  It may be great at lowering gut inflammation, but it brings on a nasty list of side-effects that make you want to never see the drug ever again!  Your mind suddenly plays tricks on you, you can’t sleep, your heart beats fast, you get night sweats, you are either ravenous for food or not hungry at all, your emotions play games on you, your hair falls out, your joints swell, your face puffs up, your belly distends and I can go on and on.

So just understand that IBD itself is horribly challenging, but even the medications can cause even more challenging symptoms. 

8. The exhausting game of trial and error.

Unfortunately, IBD is a highly individualized disease.  Meaning, there is no one treatment that works for all IBD sufferers.  Because the digestive system is so complex and has so many parts to it, treating the disease can be incredibly complicated. 

For example, Crohn’s Disease is a form of IBD which can affect your gut anywhere from the mouth to the anus.  So no two people with Crohn’s are alike.  One person with Crohn’s may have the disease in the esophagus and small intestine, while the other may have it in the stomach and large intestine.  In turn, therapy for the disease will look completely different and what works for one may not work for the other.

So always remember that IBD is a journey.  Each patient has to use trial and error to figure out the therapy that works for them.  It is exhausting and frustrating to discover what works and can take years.  In my personal journey, it took me about 5 years to finally understand what my body needed to heal.

9. It can be life-threatening.

Yes, it is true. You can die from IBD and most people don’t know this because they assume that it’s not that serious. But it is. It is way more than just a “bathroom disease.”

Throughout my journey of advocating for patients with IBD and meeting others through this blog and different platforms, the stories I am exposed to are astonishing. There are thousands that have to endure life-changing surgery in order to remain alive, and sadly there are those who even die from complications.

Whenever surgery is performed on the gut, risk of life-threatening infection and other complications are astronomical. Even without surgical intervention, if not properly treated, the disease has the ability to effect other organs and cause life-threatening complications.

10. Food and its complex relationship with IBD

I think common sense tells us that diet plays a crucial role in a disease that involves your digestive system.  And it absolutely does, however, it is quite complex and this is not widely known. 

As mentioned above, IBD is extremely individualized and effects everyone vastly different.  One IBD patient may be able to tolerate vegetables while the other can’t.  Another may do well with dairy while another can’t even have a taste of it without being sent to the Emergency Room. 

Everyone has different tolerances with food, because everyone’s gut is not diseased in the same location.

Overall it’s important to remember that IBD is more complex and involves much more than just your intestines. 

Mental health is debilitated, medications prescribed are crippling, all patients have to go through an exhaustive trial and error period to figure out what works treatment wise, diet is complex to understand and sometimes medical professionals can lead us astray furthering healing time. 

So if you know someone with IBD, make sure to be compassionate, patient and offer a lending hand when possible.  They have a lot going on, as their journey towards healing is quite taxing. 

I hope this helped shed more light on Inflammatory Bowel Disease!  Don’t forget to CLICK HERE to read the rest of the list of things we wish people knew about IBD by Natalie Begin at Gutsy Feeling.

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