What a load of sh**! Living with Crohn’s Disease Part 1 – from diagnosis to first surgery

I’m sat here on this lovely summer’s day 3 years to the day that I had my first major operation. An operation that would lead to a further 4, and counting…

I was diagnosed with Crohn’s disease in September 2012. Big L was 1 and Little L was a sparkle in his father’s eye.  I’d suffered with what had been previously diagnosed as IBS since my teens and been backwards and forwards to the Dr’s since.  It turns out it was actually Crohn’s. Crohn’s and IBS have very similar symptoms and Crohn’s is apparently hard to diagnose. It was found because I’d been ill with what I first thought was flu for over a week.  I had had a fever and my mum insisted I go to the Dr.  I had started getting pains in my stomach too and they quickly became crippling. The Dr thought it was appendicitis and sent me for blood tests.  The results came back the following day and I was sent to A & E. Following a CT scan appendicitis was ruled out and I was told it was probably Crohn’s by a junior doctor who came round in the middle of the night.  I had no idea what it was and she said I should wait to speak to the consultant in the morning.  I thought people with Crohn’s were skinny (I was and am anything but skinny!). A consultant came round the following morning to confirm they thought it was Crohn’s and that they would arrange an appointment for a colonoscopy.

Ahh! Colonoscopies! They really are a delight.  I won’t go into too much detail now but it involves drinking the most foul liquid known to man while it pours out of your backside so best done in the vicinity of your loo.  The only upside is the pethidine you get as sedation while you lie on your side and a Dr guides a not insignificant sized camera up your bum.  For your entertainment you can watch the camera’s journey through your colon.  The only thing missing from this cinematic experience is popcorn really.

Anyway, I digress, as usual.  Biopsies confirmed Crohn’s and the little journey around no man’s land confirmed that the Crohn’s had caused significant scarring to my terminal ileum making it too thin for food to pass through and it was that that was causing the pain.

I was put on the drug Pentasa but told that the scarring could not be reduced and my best bet would be an operation. A bowel resection to remove the damaged area.  A major operation but it could be performed key hole and I should only be in hospital for a few days.  Hmm.

The following August I had the operation. By now I was well under the thumb of Chrohn’s. I was exhausted and taking very regular trips to the loo. Poor Big L was not having the fun filled start to life that I had hoped for him and my mum was helping out with childcare frequently.

Anyway.  It seemed the operation went well. The surgeon was happy.  He cluttered off to Florida on his holibobs the following day.  Lucky bastard.  I started to get a lot of pain.  I was told it was normal.  It got worse.  Then the fevers started.  Fevers that actually made my whole body convulsed.  Just a reaction.  Nothing to worry about.  I was taken for a scan.  Nope all ok.  Blood tests.  My inflammation markers were getting higher and higher.  I hadn’t seen Big L or my mum for a couple of days.  I literally felt like death and didn’t want them to see me like this. Vince came to visit and I just lay in bed willing my life away.  I started throwing up green stuff like something out of the Exorcist. I covered a nurse who had basically accused me of making it all up, a little victory!  Finally, 4 days after the original operation the Dr decided that I definitely had a leak. He tried putting a tube down my nose to draw out the green stuff but I kept gagging on it. He decided that I needed emergency surgery. Which was a tad inconvenient for the hospital staff as it was a Sunday afternoon and they had to be called in. I had visions of the surgical team downing their silver cutlery half way through their Sunday dinner. Poor gits.

I called Vince and my Mum to tell them I was having emergency surgery.  That was a painful experience I can tell you. My mum broke down in tears.  Then off I went to surgery.

I came to in a darkened room with lots of flashing lights and noise.  I was in intensive care.   It turns out I had got a leak, 2 litres of fluid was sloshing around.  I had septicaemia and was on the verge of multi organ failure. When I was fully conscious I discovered I had an ileostomy and mucous fistula. Kind of like colostomy bags.  Shit! Literally! I also had a central line delivering all kinds of drugs.  This was not supposed to happen. I was supposed to be home by now.  I’d  got a 2 year old to look after.

I think you’ve done pretty well to get to this point so I’ll leave it there for now and continue my tale another day. It does go on a bit!

Thanks for reading, until next time

3 Comments

  1. Id sort of forgotten about this! You are one strong Woman (and Mutha!)
    much love xx

    1. Thank you! We live the hand we’re dealt don’t we? Xx

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