What it Truly Feels Like Living with Crohn's Disease

There is a lot of information on this site regarding Crohn's disease. Some articles are informational regarding specific symptoms such as diarrhea, joint pain, or mouth sores. Others offer inspirational advice on how to deal with a new diagnosis or what to tell loved ones when you aren't feeling well. They all encompass the true nature of what it is like to live with Crohn's, one piece at a time. 

But, if you are newly diagnosed, all of this information can be overwhelming, and some of it may not pertain to you at any point during your journey with IBD. For example, I have never experienced bloody diarrhea in the 15 years I have lived with Crohn's, but I am all too familiar with joint pain and fevers during flares. 

It may also be overwhelming to feel the weight of carrying a chronic illness for the rest of your life, and additional information is too much of a burden. So, rather than go through each potential symptom one may experience as a Crohn's patient, I would like to walk you through what it actually feels like living with Crohn's, from a mental standpoint.

How it feels to be diagnosed

Everyone has their own unique story about when and how they were diagnosed. For some, it was after a lengthy battle with doctors, determined to find what was wrong with. For me, however, it was an accidental finding during a CT scan for a kidney stone, and my life was changed in a matter of minutes. 

Regardless of how and when patients are diagnosed, we all go through the same emotions of denial, anger, depression, questioning, and acceptance. 

People may experience these in different order, but the feelings are all the same. Even those who have suffered for years with an undiagnosed ailment still don't believe they are handed a life sentence with Crohn's. It takes some time to finally accept our new reality, and we appreciate those who are there to hold our hand as we move through this processes towards acceptance, even if you have nothing to say.

How it feels to experience a flare

A flare can come out of nowhere or it can start appearing in minor ways like occasional stomachaches, more frequent cramping, or fatigue.

Every patient experiences flares differently, and I have never had the same type of flare twice. 

As I mentioned above, I never experienced bloody diarrhea which is quite common among IBD patients. I have, however, experienced joint pain, high fevers, a distended stomach, multiple abscesses, bulging bruises, nausea and vomiting, and mouth sores - all of which were experienced separately over the course of 6 years.

And despite every flare physically feeling different, the emotional toll always hit the same, "Why me? Why now?". It is a feeling of defeat, knowing the long road ahead of testing, hospitalization (sometimes), medication changes, antibiotic and steroid doses, and trying to pinpoint why the body decided to flare again. 

It's like watching the same movie over and over, with minor character changes that happen to be your symptoms. It also makes you feel worthless, that your body cannot uphold to its standards and function like a "normal" human being. I have often felt like a broken car that was taken into the shop one too many times before someone decided it was time to trade it in for a new model, only I couldn't trade in my body for a souped-up version of myself.

How it feels to start a new relationship

Imagine taking all of your insecurities and putting them on display for your future husband/wife to see, knowing that these traits are going to stay with you forever and that person sitting across from you will either have to accept all of it or walk away. That's what it feels like to start a new relationship living with Crohn's. 

I have had many relationships end because of my disease (thankfully I weeded out the bad ones) so it was frightening to tell my husband when we first met that I had Crohn's. I waited about 2 weeks after we met to tell him, which was exactly 5 weeks after my partial colectomy, and he didn't care in the least.

I truly believe that the right person for you doesn't care about your disease (as my husband said, we all have something) and if you someone makes you feel like you are a burden to them, kindly show them the door. It is never an easy conversation to come out and say you have Crohn's, but use your instincts to trust when the time is right, and let fate do the rest.

How it feels to miss important events

I have missed many fun and important events because of my Crohn's and it never feels good to cancel. Calling someone who is depending on you to be somewhere to say you can make it feels like you're not only letting them down, but like you are being selfish even though that is not the case. I have had unfortunate experiences where individuals didn't understand why I had to cancel, and it made the physical pain I was enduring just as bad as the mental anguish I felt after bailing.

I have had to cancel trips, postpone work events, and miss milestones in my friends' lives because of not feeling well or having a flare, and there was never a time where I felt "good" about missing out. My body needed the rest and/or treatment, but it was never something I chose to do without my body forcing me into it.

How it feels to hear the word "remission"

After living with my disease for 7 years, full of hospital stays, medication changes, tests, and more, I finally heard the words everyone who has IBD wants to hear, "You're in remission," on August 11, 2016. In my hazy reality coming out of anesthesia post colonoscopy, I looked at my GI in disbelief and had her repeat what she had said. The three words I had prayed to hear were finally true, and it felt amazing. 

I honestly cannot put into words exactly what it felt like, but it was an elation I have never felt before, but also a sense of relief. And, there was also a feeling of cautious optimism because I knew that remission may not last forever, but I was hopeful I was on the right path toward more healthy days in my future.

Share with us!

What are some feelings you have endured while living with Crohn's?  What was it like to first be diagnosed, experience your first biologic infusion, or be declared in remission?