The Life of a Ghost with Crohn’s Disease

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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. 

Isolation while sick

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?

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Member

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

Guest
Troy

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.

Guest
Casper

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!!!

Guest
Call me Casper

Crapped myself in public looking for a loo. Been late to pick up the kids cos I had to change an accident. Been too sore to sit and too raw to wipe. Now I haunt my ensuite and the repetitive household tasks. I disappear and reappear again over 20 times a day – hoping to rest in peace knowing the chores are done when the afternoon crushing fatigue sets in and my eyelids are too heavy to hold open.

I never noticed how gradually IBD’ers become ghosts, wasting away and moaning from the hall to the toilet.

The social life drops off first, then travel slowly falls away and becomes a panic attack about going grocery shopping. Soon – the partner is bringing home the shopping after work while you text a list between trips to the john.

Sadly, my partner attends family occasions appologising for my absence. They dont understand and I appear aloof or rude or seem to be just making excuses which torments this ghost as I haunt an empty house with a ring of fissure fire so cutting and cramping so crippling and diarreah so violent that I sometimes feel like Im about to pass out. This is no feeble attempt to get out of family gatherings this is living hell!

Even my kids think its normal to converse with me thru a toilet door and slip their pictures under frequently for me to see.

Your photo was brutal – you have had it tough. Im yet to have a fistula (thanks for the heads up on how serious this can get) and pray I can avoid major surgery but I do have a refferal to a surgeon .. probably because of a weird perianal golf ball and what looks like a skin tag .. but even at this early stage of disease I have been relegated to live a ghost of a life.

Did you get wicked night sweats with the presence of an abcess?? I have the unfortunate skin ulcer manifestation as well so I find myself haunting this place just as much from self conciousness as everything else.

I occasionally force myself outside my haunt for medical reasons .. my psychologist has been just as valuable as my GI specialist.

Such is life. At least this spook has an internet connection, ha ha!

Guest
Jane

This is brilliant. I shared it with my partner and it is exactly the unnamed pain we are experiencing. It could only be written by someone who has lived it. I said “no” to another party yesterday where my friends of a lifetime are gathered. My partner went alone, again. I’ll stay in an empty room and get another paper plate of food covered in foil.The point is it really helps to give this difficult experience a name and a description. It makes it smaller and more real at the same time. Thanks VO!

Guest
Ryan

This really choked me up so like my life at the moment I’ve got two girls 3 & 7 and I’ve missed so much with them it makes me so sad. But I’m going to change this I’m going to get a ileostomy. keep up the good work

Guest

I just re-posted mine he other day, but I know the feeling.
https://crohnsknows.wordpress.com/2014/12/11/like-talking-to-a-ghost/

Guest

I’ve missed three funerals and close to a dozen Christmas get-togethers due to ulcerative colitis. (One of the funerals I’d traveled 300 miles for and just wasn’t able to go. I ended up very familiar with the hotel bathroom.) I felt terribly guilty, but at least my immediate family was very supportive. Since then, I’ve decided that if someone wants to see me, they know where I live.

I hate not being able to take my daughter places and do things with her. I hate not being able to go hiking with my husband. I hate that this disease keeps me at home so much, with the fatigue and the oh-gods-where-is-the-bathroom worry and the time-for-my-next-dose that consumes my non-working hours.

The best compromise I’ve been able to find is to do what I can, when I can. Tabletop and video games are a decent way to spend time with friends and family. It’s not hiking through the forest or running a marathon or driving down to Los Angeles for the weekend, but it’s better than nothing.