The Life of a Ghost with Crohn’s Disease


When I was interviewed for the IBD Round Table, I made the comparison between having Crohn’s Disease and living as a ghost.  It didn’t dawn on me just how accurate that description was until I began to think more about it.

My experience with Crohn’s Disease (before my ostomy) has been extremely negative, not only because of the physical and mental suffering it’s caused, but how it affected my family life.  

For my family, my being sick was like being dead – and I’m not trying to sound dramatic, either. For most of my disease, I couldn’t take part in birthdays, weddings, funerals, trips to the park, the mall, the backyard, let alone be present for dinners or playtime.

I was a ghost.

For my kids, the idea of “daddy” was there, but daddy wasn’t – not to cuddle or laugh with, not to watch movies or go strawberry picking with.

I wasn’t living in a house, I was merely trapped in one, and my haunting meant that I’d see less of my family and more of the inside of an empty room.

I wasn’t around for them, and it hurts to recall all the lost YEARS I spent being too ill to be a good father or husband.

Being a parent is tough, let alone being one with a chronic illness, so if you have kids (of any age), please let them know that not being able to do the things they love doing with you is not their fault.  

I didn’t do this enough, and I regret missing those opportunities to let my kids know that our circumstance was not their fault. 

If you are living as a ghost, or find yourself becoming one, let those around you know that you’re struggling. Isolation is not required when we are hurting, nor is it an ideal way to battle this terrible disease, so their mere understanding can go a long way.

Question: Has IBD ever turned you into a ghost? How have you handled it?

19 thoughts on “The Life of a Ghost with Crohn’s Disease”

  1. This is the best and most accurate way I have heard it described. Thanks again. I too am most definitely an ostomy ghost.

  2. Hi All, still being new to VO I am still going through Erics posts. AN OSTOMY GHOST, I have never really thought of it that way before but it has given me flash backs that says its TRUE. I can remember one very unpleasant weekend a break away was planned with friends. I had been feeling not so bad for a few weeks and had been looking forward to it. my partner at the time and another couple had rented a sideside cottage. I was probably their about one hour when crohn,s turned up for his weekend. The first thing my friends had to do was go and purchase loo roll when they should have been getting the beers in, Plus my mates girlfriend then took it into her head I was in some sort of bad mood and spoiling it for everyone else! OH BOY!! Funny that couple aren’t on my Christmas card list any more. Thankfully a month later I was with stoma and really knew who my friends where. Bring on the happy times and life is GOOD

    • There’s a saying that you find out who your real friends are when you become sick. Looks like you were able to weed some out yourself.

      I’m really glad to hear that your stoma has made things better!

  3. Agree completely. The disease was bad, but 7 years of surgical complications was worse. I have been a pretty high maintenance ghost at times too.

  4. Night sweats ..
    It is winter here, overnight temps between -1 and 4 degrees (C) at the mo. No heater on. One sumner weight doona.

    I have to wake my partner to help turn the mattress over (even soaked thru thick bath towels) and change sheets and doona while I shower. Hair is wet anyway.

    Dont you just hate that awful feeling? Waking up soaked, shivering to the core, toweling the sweat that feels creepy dribbling down your spine frim the nape of your neck – tired but facing the whole rig moral of getting dry enough to head back to bed!!

    Im just blessed that my partner is so wonderful about it all, help ful and more concerned about how I am than having their sleep disturbed.

    Red flag, yes. But waiting months to get checked out by the specialists with pointy shoes sux! 5 weeks till my surgeon can see me .. Oh goody! XD

    I like your blog, VO, you dont pull any punches. You tell it like it is!
    Thank you for listenening!!!

    • Winter?! I guess you’re from down under? =)

      That feeling is terrible, especially when you wake up in the middle of the night and you’re half asleep! Having an understanding partner definitely helps, and I’m glad you’ve got that!

      Good luck with your appointment.


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