The Irony.

Well Fuck… That’s probably the best way to describe the last two weeks.  I’m currently sat writing this staring out of my hospital window with six little holes in my stomach, shitting into a bag… Weird right?! My whole body is swollen beyond belief, battered and bruised. I’ve gone up about six dress sizes from all the swelling and it’s all in very random places… Making me look a little like Mr Blobby…

But let’s go back to the beginning.


This is what 18 months of pain looks like.

On Wednesday 27th December 2017 I crawled on my knees to my first appointment with my surgeon.  My anaemia was so bad I couldn’t stand in the lift and my insides were so unhappy that I just felt (and looked) like a zombie. There and then, my incredible surgeon admitted me. THANK GOD! The nurses got a cannula in my hand, hooked me up to all sorts of drugs and my first of seven blood transfusions, quicker than you can say colon removal. This is where it got rough… I couldn’t make it three feet to the bathroom and if I did manage to make it the only thing I was passing was pure blood.  Safe to say my body was not happy at all.

This went on for 6 days while I went through a CT scan, an X-ray, two sigmoidoscopies and an endoscopy to make sure that it was definitely the Colitis and nothing more serious. I was just so ill that I didn’t care what they did to me. Everything was hurting – I could feel my colon just grinding and twisting – all I wanted was the pain to end. So after all the additional tests and it being confirmed that my colon really did hate me, on Tuesday 2nd January I went down for the big chop! I spoke to the anathetist team, surgeon and GI before being put under so I knew what was going to happen but to be brutally honest I had been so unwell that I don’t remember much… I just wanted it to be done. A nurse laid me down on the bed, placed a mask over my nose I was out.

The next bit was where it got scary. I can remember being wheeled down a corridor, in the most unimaginable pain – my whole body was shaking and I was just so sore. It felt like I had been in pain for hours but it was probably just minutes. I woke up in a side room in the ICU with mum and dad on either side holding my hand and stroking my face and the pain stopped (I mean it was probably the IV morphine I was on but having mum and dad there made all the difference).

My surgeon came to see me the following day and said that the 4 hour surgery was ”easy peasy” and went ”hunky-dory” – nice to know it was easy for him when I look like I’ve been in a fight… I was in intensive care for the next two days drugged up on morphine and everything was a bit of blur – I do remember being down there but it kinda feels surreal looking back. Regardless of how swollen I look, the tube up my nose, catheter in and central line in my neck (that thing is fucking nasty!) I remember telling my mum that for the first time in ages I didn’t have a tight, twisted UC pain that I had become so accustomed to. I was bloody sore from the surgery but it was different to the pain of my insides waging war on themselves.

Getting out of ICU was a relief, and three days post surgery the tube in my nose was due to come out, along with the central line in my neck and I even managed to walk down the corridor. I saw my stoma nurse that afternoon and we went through all the ins and outs of bag changing. This is going to take some getting used to – To see your insides poking out your stomach is… gross… And due to the pickle I was in before I went down for the surgery, I did have a slight complication. Usually the doctors pack the rectum and leave it in place to heal for eventual j-pouch or permanent ileosomy surgery, but mine was so inflamed that I have a fistula along with the stoma. It looks a bit mouldy and that is going to take some getting used to but I’ve been told this will just heal up a few weeks; I had prepared myself for the stoma but this is going to take some adjusting to.


Anyway… Day 4 post surgery and ensue hating the world. EVERYTHING HURT! I’d been taken off the glorious self administered morphine and I couldn’t get up to pee without needing a nurse! Everything that I ate made my tummy grumble and gurgle, making everything so difficult. I just wanted everyone and everything to go away! But that is part of it all – I know I’m going to have these kinds of days and I need to let myself just be angry.


Moving onto day 5… The pain isn’t constant anymore and I can pee without needing a helping hand! Im also not scared of food anymore! With the UC everything that touched my lips meant running to the loo and praying that I didn’t have to clean up an explosion on the way there! I’ve been so used to the constant worry of not making it to a bathroom, getting that out of my mind is step number two!

But finally I can finish this blog post on a high! I’ve been writing it for 3 days so you’d hope so… I’m now 6 days post op and IM GOING HOME! I’m getting to grips with the stoma and her name is Rosie! Rosie and I are now getting to know each other and I’m hoping she is going to give me my life back! Fistula ‘Jim’ (get it Rosie and Jim…haha) is going to take some getting used to but baby steps!


I guess its the irony of all this is having a blog called Trust Your Gut when you don’t actually have one anymore!


One thought on “The Irony.

  1. Hey! Congrats! I had my surgery (total colectomy) on 10/17/17 and life has been so much better ever since! I was on a lot of prednisone for all of 2017 and I’m finally down to 2.5mg!
    I must share with you that (according to my IBD Specialist) having a fistula automatically changes your diagnosis from UC to Crohn’s, even if that is the only criteria–she changed my diagnosis to Crohn’s Colitis when I developed a perianal fistula. This is because UC only presents in the surface layer of your colon but Crohn’s goes through multiple layers of tissue and presents anywhere along the digestive tract, with severe rectal disease being common. I found the change of diagnosis a bitter pill to swallow–UC is “cured” with surgery but Crohn’s is forever. However, IBD Specialist said that as long as I go forward with a protectomy and make my ileostomy permanent, then I likely will remain disease-free and won’t ever need meds again. My surgeon offered me a j-pouch with the understanding that Crohn’s patients have a high likelihood of complications, making the pouch uncomfortable at best and at some point it would most likely need to be removed. If I was younger I would probably take my chances on the pouch, but I’m middle-aged and I don’t want to go through multiple surgeries. I don’t want to take meds anymore. And I will do anything to avoid another fistula. I don’t know why your surgeon glossed over the fistula–they do not heal easily and alot of people are stuck with them for life. The abscess that caused my fistula was the worst pain of my life–right up there with child birth. So I decided to keep my ileostomy rather than gamble with a j-pouch. I say all this so you know the deal, in case your docs haven’t explained it.
    For tips onlife with an ostomy, I watch youtube videos–my favorite ostomy vlogger is “Lets Talk IBD”–she is so cute (young, slender, and has red hair–like you) and very informative. Try all the samples but my favorite appliances are by coloplast–write down the item #’s of any ostomy products you like because trying to order them without the exact item # is impossible (found that out the hard way). Any questions, just ask! Happy, Healthy New Year!

    Liked by 1 person

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