“You call that normal?”

The amount of times i’ve spent in hospitals and being admitted is ridiculous. i used to brag a few years ago that I had never been in hospital; never broke a bone, never been poorly, well guess who’s not laughing now.

The first time I was admitted in hospital was an eye opener. Sunday 19th March 2017, I had been diagnosed around 5 months and never really had a good day, but for me I just got on with it, thought it was something that I just had to deal with now!

I went into A&E through night with the worst pain i’ve ever been in, Dr Valentine (honestly) assessed me with the usual questions “how many bowel movements a day?” “what are your bowel movements like?” “Have you noticed any blood in the stools?” To which I replied, of course, I go around 10 times on a good day and there is always blood… but thats just normal for me.

“You call that normal?”

Trust me, now I know, that’s not just normal and it was always etched into me. It is not normal.

I spent my first week in on a max dose of the usual prednisolne and because I’d been losing that much blood a good old iron and potassium infusion! Luckily I was in my own little room with my own toilet, where my Mam could visit whenever she wanted and bring me nice snacks and company! Sounds like a holiday camp, I knew I was going to have to get used to this, it certainly wasn’t going to be my last time.

I’ve since been in multiple times, to different hospitals. Whitehaven, Carlisle and Newcastle RVI, it’s nice to try different hospitals, different scenery but each time a new set of friends made.

I could go on all day about the people I’ve met whilst being on different wards. I liked being in my own room, and sometimes that was essential (like when I had to have a commode as I was going on toilet about 30 times a day, and I was not comfortable with 5 others watching me do that) but I like being on a ward for the conversations and it stops it being so lonely.

It goes from the lovely Lillian who kept waking me up through night as she believed there was a dog licking her hand (definitely dreaming), to the wails of Frank who managed to wake up at 8pm every night and then fall asleep at 7am the next morning, Bernadette and her carers who put me and Connor on to our favourite Thai Van in Carlisle Viaduct carpark (Shoutout to the Pad Thai strEAT food).

In my last visit to the RVI for my sub-total colectomy, I was in for 15 nights, made bearable by every single person on the ward, I will never forget any of you! (Apart from the woman opposite who complained she couldn’t get any sleep when they discovered through night I fell ill with an infection and had to keep coming in to monitor me and whizz me off for emergency CT scans, honestly I would much rather have been getting some sleep too.)

And the story begins..

Hi All,

This is me, Kirby Johnston, 23 from Whitehaven, Cumbria.

Jesus it’s like a CV isn’t it, honestly it’s not all going to be as boring as that, but formalities first!

Not really sure about this, but here goes! I will (hopefully) be bringing you an insight and some stories about living life with Ulcerative Colitis and and ileostomy!

My goal is to spread awareness of the disease and break the taboo. We all use the toilet, some more than others, but nobody seems to want to talk about it! It’s embarassing to talk about, but it really shouldn’t be. I remember the first time I really noticed something was wrong, it was just after I came home from a family meal, May 2016. My Dad actually suffers with bowel problems, Crohns, and when I was 16 he suffered a perforated bowel leaving him with a colostomy. Since then he has had it reversed but as a family we were all aware of the disease. Therefore, when I went on toilet that night after the meal and noticed some blood in the toilet, I knew right away something was wrong and after telling my parents a doctors appointment was booked for the next day.

Alot of people have problems getting the doctor to take them seriously and it’s awful to say it but believing just how bad it is. When I went to the doctors that next day I went through my symptoms, told them about the blood and it just felt like they were going to chase me off, but as soon as my Mam mentioned my Dads history, something just switched on. I had to take bloods and stool tests and then I am pretty sure when they came back I was referred to a gastroenterologist for more tests (the dreaded camera). I had my official diagnosis of Ulcerative Colitis in October 2016, when I was 20 years old.

So there we have it, thats my story… ha, I wish, thats just the very start of my story and let me tell you there is so much more to go!

It’s hard to explain Inflammatory Bowel Disease (IBD) unless you actually live with it 24/7, actually I would say it is unexplainable. Unpreparable too, nothing could ever prepare you for living the rest of your life with an incurable disease, but everyones cards get dealt and sometimes you don’t get the hand you want.

I have got so many ideas I want to write about in this blog, I want to tell my story, every single detail. But, there is so much to go through so i’m going to need some help.. I need to know what people are interested in, what people want to actually know, there is so much to tell… well 4.5 years worth of living with a chronic illness to be exact!

  • Surgeries
  • Medication
  • Symptoms
  • The dreaded steroids
  • Hospital stays
  • Colonoscopys
  • Working with IBD
  • Relationships with IBD
  • Travelling

So please tell me if you like what i’m talking about, share it around, get my story out there! I just want to help, even just one person feel like they aren’t alone in what the are going through 💕

See you all on the next post..