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What’s it like to experience an IBD flare?

When a loved one or friend says they’re “flaring”, you may wonder what they mean. You may question how serious it is, how painful it is or what this means for the person going through it. Unless you live with Crohn’s disease or ulcerative colitis, it’s impossible to truly grasp how a flare up flips your world upside down. As someone who’s battled Crohn’s for more than 13 years, I’ve unfortunately experienced my fair share of flare ups that required hospitalization. Lucky for me, since bowel resection surgery in 2015, I have not had a flare up that required medical attention. Please knock on all the wood around you!

Vivid memories of flares

Despite the three years outside of hospital walls, the pain, exhaustion and emotional aspect of my past flares lives vividly in my memory, and always will. I can go back to each flare up, remember exactly how it started, how it felt to drive to the hospital, and what it was like enduring countless tests, pokes and prods. When you experience something like this, it stays with you. It’s traumatic. It’s gut-wrenching. It’s something many people push under the rug or choose not to talk about. A simple “Get Well Soon” card doesn’t do the trick. When you’re released from the hospital, it’s not an ending to a flare, but often only the beginning. Medications are often updated or changed, recovery physically, mentally and emotionally begins. You are not the same. It’s a setback in every sense of the word.

The signals

After your first flare that requires hospitalization and as time goes on with your IBD battle, you get an innate understanding of the signals your body is trying to tell you. You know when to listen. You know when it’s something you can’t control on your own. Determining when to seek medical attention is something that always weighs on me. I’ll go back and forth in my mind. Give myself a few more hours and see if things get better. Personally, once the vomiting begins or the fevers strike, I know it’s time to head in.

You know a hospital stay is likely

Showing up to the emergency room is emotional for many reasons. For one, deep down with IBD, many of us know the likelihood that we’ll be admitted is very high. I always pack a hospital bag every time I go to the ER, knowing that I won’t be going home. There have only been two times where I’ve gone to the ER and not been admitted. You know you’re about to undergo testing that involves drinking disgusting concoctions of liquid. You know there will be IV pokes, medications that ease the pain but can also make you feel sick. You know test results can paint a clearer picture of the culprit, a culprit that could result in surgery, a long hospitalization, or changing up your medication. You know steroids are probably in your future. It all starts playing out in your mind, because you know.

It’s emotional

You know what’s going to go down and you know this won’t be your last time experiencing it. There is no end in sight. The feelings of frustration and worry fill you up until you’re overcome with emotion. An emotion that can be released as sadness or anger to those around you. You may lash out at those by your bedside. Not because you are mad at them, but because you’re mad at the situation.

When you stand tethered to your IV pole and look at your reflection in the bathroom mirror, you feel a sense of loss. You can’t help but notice all the bruises from the needles, your darkened eyes, your body that begs for a shower. When you do laps around the hospital corridor you feel the eyes upon you, the strangers feeling sorry for you, wondering what’s wrong with someone so young, who should be so vibrant.

Then, there’s dealing with countless doctors, nurses and hospital personnel. There are those who will lift your spirits and there are those that will knock it down the moment they briskly walk through the door. The lack of compassion and empathy so many of us face throughout our patient journey from medical personnel is incredibly disheartening. I remember getting a phone call. Yes, a phone call…from my former GI telling me I would need a bowel resection. It was my first surgery. I guess walking into the room and having a face to face conversation was too much of a burden on him.

Just be there for us

So the next time you’re visiting us in the hospital, driving us to the ER or holding our hand on the couch before we make the decision to head into the hospital, know what thoughts are running through our minds. Take a moment to pause and recognize how raw and defeated we feel. And just be there. No judgement. No questions. Just be there. We’ll share what we need and when we need it when we’re ready.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • thedancingcrohnie moderator
    4 months ago

    Thank you for writing this. It is spot on.

    Always dancing,
    Elizabeth (team member)

  • 4 months ago

    Thank you for your share. I felt like you shared from my soul. So many years and so many doctors, nurses, hospitals, surgeries and most of all disgusting tests taken. I was diagnosed in 1994 but was “sick” sixteen years before that. So many of those years doctors telling me there was nothing wrong and it’s all in my head. I have had 5 surgeries, the last one was in 2012. While reading I felt every emotion that you shared. I was a mom to 3 young children when I flared so bad that they did surgery not even knowing that I had Crohn’s. The shame and powerlessness was and sometimes is what gets me. Now I’m a Grammy too. I’m trying to make the holidays perfect and telling my active disease this can wait until next year. My resolution will be to take care of myself and keep fighting the good fight. Hugs to all you suffering out there.

  • Aya.
    4 months ago

    I was diagnosed three years ago.. It’s still undetermined but all my symptoms point to ulcerative colitis.. There are new symptoms now but I am overseas and cannot contact my doctor. As you said the medical staff mostly is so bad.. I had to change my doctors four times and I’m not sure if I should settle with the current one. I am 22 years old studying medicine away from home in Egypt, in a really poor city where there aren’t any hospitals and specialists really and the ER is a joke. Last year I had my first flare and I felt like I was dying. I’m the type of person that doesn’t share anything so even my roommates didn’t know, until one night I collapsed after knocking on my roommates door… I have a really bad relationship with my father, am not really close to my mother, and still I don’t have any good friends, so I was all alone.. As if medicine isn’t hard enough with being sick that semester I failed and I am currently taking the whole year again. The blame, the bad things my family had to say was enough for me to cut them off this year, I feel like I have no one but my books and passion for medicine to survive. All I want to be is a good doctor in the future, better than all the doctors we ever had to deal with, and I will always remember what it’s like to be on the other side because I will always be there, my disease is going nowhere and that’s something I have to learn to accept. I have to admit I am scared of the next time I get a relapse because I don’t know how bad it’s going to be.. And of course being alone and having responsibilities makes it even worse.

    I wish you all the best in life, and I pray for god to heal your soul and grant you many good days as much as you had bad ones.

    All my love and respect <3

  • BrandieBowman
    4 months ago

    The moment I started reading the part about being tethered to an IV pole I started to cry. Ive been here so so many times I’m 37 and have had Crohn’s since I was about 5. 32 years of starring into a mirror and feeling shame and like I’ve let everyone in my life down. This is such an incredibly raw look at what IBD can feel like on any given day. Thank you for sharing it was beautiful!

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