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When Loss is so Real

The IBD Community has suffered so much loss lately. So many young warriors have lost their battles against this disease. Horrifying isn’t it?!

When I talk about or explain what Crohn’s Disease is, I give the usual spiel about how awful it is and that it’s basically like AIDS that doesn’t kill you. It’s everything else that does. It rots and erodes you inside out.

I’ve told it and expressed the severity without really truly accepting the permanent toll it can have. It can take my life. It can take me from my children and my husband.

Close to death

And yet I have been so close to death multiple times.

I haven’t really accepted that. I feel it when I’m sick or when I’m thinking about not being around for my children’s futures. Then the tears come and I feel it to my core. So deeply that I have panics attacks and can’t stop crying.

My husband still does not understand the severity and the true reality of this disease.

In 2011 while 37 weeks pregnant with our first child, my stoma stretched and tore a tiny little hole that leaked into my abdomen.

I’d been in surgical remission for 5 years at that point and I knew things weren’t right but everyone dismissed it as round ligament pain.

By the time our son was 5 months old, I’d been in and out of ED, and my specialist said my Crohn’s was back when I knew it was more.

I flew interstate and they immediately found that my body was shutting down. I was dying, and I had 2x 5cm abscesses in my abdomen filled with fecal matter. My husband was completely useless and kept insisting I was putting it all on. People say it was his way of coping, but I’ll never let him live that one down.

I needed so many more surgeries and more complications and more moments close to death on that road to recovery.

The lingering one is now living with only 1.75m of my bowel. That’s not a lot to play around with. That poses so many risks on its own.

I live and I love

I’m a realist too. Knowing reality as harshly as I do, I know (despite everyone’s reassurance and friends ultimate denial) that I’ll be lucky to live 20 years.

That itself is a cold, harsh, and devastating reality.

I need that mental prep. I don’t want it to be real. In fact, writing this makes my heart race and I break into a sweat.

I don’t live every day with this reality of my disease being able to rip my world apart, but I do live life like it’s my last day.

My life revolves around making an impact on this world. I want to see people educated and the stigma removed. I live with no regrets and I love with every fiber of my being.

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


  • dodo
    1 year ago

    I was diagnosed with Crohns in 1974 and did very well until1980when things started to fall apart. My husband, altho’ “supportive” on the outside, apparently thought it was all in my head- a fact I just found out about recently.This really shook me.How long had he been thinking this way?Is some of that attitude still there-I’d say yes.I’m quite angry about this-feel like I should have carried copies of my x-rays around with me all those years!If anyone doubts me now I just show them the scar on my abdomen-that usually shuts them up. Persist and don’t be a victim !

  • Pam.Kingsland moderator
    1 year ago

    Hi @dodo, thank you so much for weighing in. How frustrating! IBD can be such a misunderstood disease and so many just don’t understand what you are going through. I can only imagine how you felt when that secret came out 🙁 I hope that the more we advocate and spread awareness, you will not feel the need to carry copies of your x-rays around! We’re all here for you, you are not alone! Warmly, Pam (team member)

  • thedancingcrohnie moderator
    1 year ago

    This is definitely a sobering read. I feel like so many forget how severe this disease can be, and there are many that have to deal with tough realities.

    I commend you for your strength and for spreading awareness amidst such trials. You are the definition of a warrior. Press on, dear friend. Rooting for you.

    Always dancing,
    Elizabeth (team member)

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