The land of no sleep – Crohns, Winnie and the Land of Nod

Me asleep after exhausting day!!!

One of cruelest things about having Crohns, Colitis and IBD is the lack of sleep…..Ok, I hear you all shout, stop your moaning thestomabaglady we have all suffered from no sleep. We have all gone to work with only two hours sleep with a massive hangover, feeling so tired we fall asleep in an important meeting, while all our colleagues watch as  dribble runs slowly down our cheeks before 3, 2,1……and your back in the room, jerking awake so violently that everyone, including the boss, not only notices it but makes some sort of creepy snide remark about a bed is for sleeping in or, even worse you get a serious talking to about your health, how you are a grown up, and shouldn’t be partying on a school night

Ok so if that’s happened to you it is a bit funny!!!

But the sort of sleep depravation I am talking about here is the kind you get when you have something really worrying you so badly that the little voices in your head start an internal argument which, no matter what you do, you can never silence, meaning they go wittering on and one, round and round, until you are screaming for peace and quiet and giving in to looking at your bank balance tomorrow, paying off your bills, or saying you are sorry to your sister for stealing her one-eared teddy 15 years ago.


For Crohns sufferers that one off hellish night, that never ending endless night – where the clock ticks so slowly you are sure that it’s not moving at all and have to keep getting up to play with the batteries and put the mechanism against your ear so you can hear it ticking to check it’s working – happens EVERY SINGLE NIGHT.

Let me put it this way. It doesn’t seem to matter how good my illness has been all day – my Crohns could literally have been singing and dancing in the fields with flowers in her hair surrounded by animals singing with her (like in Snow White) – the moment I put one foot near the duvet she screams RIGHT SUCKER YOU’VE HAD IT EASY! I’M GOING TO KEEP YOU, YES YOU, AWAKE ALL NIGHT!!!! and she is always true to her word, my Crohns never tells a lie.

Oh dear me looking knackered

In 13 years I don’t think I have ever had what an average ‘unsick’ person must call a healthy night’s sleep,  but my exhausted and battered body has needed every little tiny second of it. I long for a day when I close my eyes and am not woken by the sound of beeping hospital machines, excruciating joint pain, vomiting and reeling nausea, or feeling like someone is trying to cut their way out of my abdomen using a rusty razor blade…how lovely and refreshing it must be to wake up refreshed and feeling well rested without having to knock yourself out with alcohol, sleeping pills or tramadol to even get three hours in a trott undistrubed for your battered body.  

Its a cruel world where your body fights all day, needing every ounce of energy to cope with all the blood, countless toilet visits and mind-numbing pain, but then isn’t allowed the basic human right of getting a few hours uninterrupted sleep just to replenish, recharge and think “hey I might just have enough energy to do all that again tomorrow”.

Sleep is a basic human right. You can always tell when someone is starved of it – they’re that person in the supermarket at 2am wearing Snoopy pyjamas with a glazed look in their eyes, pushing the trolley around randomly throwing boxes of Crunchy Nut Cornflakes and pet food off the shelves without even looking at them, and then, trying to pay at the till with their Boots Advantage or Organ Donor Card. 


Crohns/Colitis are exhausting and unrelenting illnesses that zap their poor, weak victims of every ounce of energy they have, making it a massive 007 style mission to do even the smallest of mundane tasks. We need sleep. Our bodies yearn for it with a burning desire that never leaves us….we can never sleep on demand, or at the times we need to or have the rare chance to, instead our bodies always try to sleep at the most inappropriate moments – my most recent experience was at my desk while halfway through a sentence while talking to my boss (I hope he didn’t notice) – but by then I had been awake for around 4 days straight.

Anyway, as I lay awake at 4am last night after Winnie woke me filled with so much hot air I could have levitated off my bed, I decided to start a new Vblog for everyone out there with IBD, or any other illness or personal problems that stop them from getting a ‘good’ night’s sleep and leave them hovering their flat, polishing their wine glasses or raiding the fridge between three and four in the morning just to stop themselves going insane and finding a concrete brick to knock themselves out with just to get some rest. The videos are called #ostomyhour as Winnie always wakes me between 3 & 4 am, I don’t know why this is, but since the operation eight-weeks-ago I haven’t managed to get past 3 or 4am without waking up for some sort of Winnie or Oscar related reason. WEIRD I know.

So the idea of #ostomyhour is for me to share the reasons why I can’t sleep, how I am feeling, what I am thinking, what I have tried to solve it etc….but it is for everyone in the world who sufferers from lack of sleep for whatever reason – to join in, comment on, tweet on and basically pass tips on.

So below is me at 4am this morning trying to look half human despite my lack of makeup and mega sexy bed-hair, talking about my sleep issues, my Crohns and my stoma bag. Please join the #restlesstweeters and bloggers out there and comment on my blog, vblog and my twitter @thestomabaglady about your sleep and your ongoing problems with your ostomy or IBD!




Hope you sleep better tonight 🙂 


5 thoughts on “The land of no sleep – Crohns, Winnie and the Land of Nod

  1. I have great sympathy – not because my bowel is a pain in the butt but because I watch my eight year old son struggle with sleep every night, so by association, I feel your pain. Have you tried melatonin?

  2. Reading your blog is amazing. I’m 23 and have IBS, granted its not like IBD but I’m
    In constant pain, make multiple loo trips a day and have embarassing moments and situations that go along with it. You’re an
    Incredible woman and an inspiration to me. All those days I lay on my floor crying wishing it wasn’t happening to me and wanting to go out partying with friends but feeling too embarassed to leave the house in case there was an ‘accident’ seem completely ridiculous in the face of what you’ve been through. Thank you for your honesty, humour and wonderful sense of spirit that has changed my outlook on life 🙂 xxxxxx

    • WOW! Your comment has moved me to tears.

      The idea of this blog was to just show people, like you and me, that they are never alone and shouldn’t suffer in silence. I didn’t think anyone would ever read it and the fact that my experience and story is helping you to deal with your IBS is just incredible. I feel really moved. Just remember I am just like you 🙂 I have my good and bad days, remember that its ok not to always feel good, just stay strong and keep going, giving in with these horrid conditions is not an option.

      You may not think it right now but you are a very brave person. Probably the bravest you know, and the strongest. I have had days that I have been angry I can’t go out because of my Crohns and have drinks with my friends, in case I have an ‘incident’, but eventually you realise its just a night out and there will be plenty more in the future. It may be embarrassing (it is :() but try to talk to your friends about it as they will probably be more understanding then you think, you never know one of them may be going through the same thing.

      Good luck with everything. I hope you keep reading and following my blog. xxxx

  3. Hi there! This post could not be written any better! Reading this post reminds me of my previous room mate!
    He always kept chatting about this. I will forward this page to him.

    Pretty sure he will have a good read. Thanks for sharing!

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