If you have had a bad time with your IBD, this blog might make you feel better. Maybe you’ve had a really bad day, or maybe something really embarrassing has happened. Or maybe things just haven’t gone your way. You’re not alone.
To show you’re not alone, In this blog post I’m going to list my worst, most embarrassing, most stressful experiences from my journey with IBD. I’ll share mine, and if you’re feeling brave, you can share yours in the comments.
I’ve put my list in ascending order – so they get worse as we go up.
Number 3
This is an odd one – I was actually already in hospital, with a major ulcerative colitis flare.
I was on a bed in the ward, and there were maybe 11 other beds on the ward.
Not particularly private. It was the kind of bed with a pull around curtain, no walls or rooms to yourself. Just the bed and curtain.
There were two bathrooms between the 12 beds. They had a shower, basin, and toilet. All pretty standard stuff.
However One of them was out of order due to plumbing issues. Can you believe that(!), a gastro hospital ward with plumbing issues in the bathroom – you couldn’t make it up!
So me, in the hospital having a major UC flare up. That meant when I needed the toilet, I really needed to get there quickly. And one of the bathrooms was out of order.
That made my whole experience so much more stressful. I was constantly on edge as to whether the bathroom would be free at the point I needed to rush to the toilet.
I would lie on my bed, constantly watching who went in and out of the bathroom.
It got so bad that I actually said to the doctor that I needed to be discharged so I can be at home with my own bathroom. I was probably discharged a couple of days early as a result of this.
I had finished my IV steroids and was on oral steroids at this point, so I was starting to recover.
But for the week or so I was in there, it was just awful. Really stressful.
Number 2
It was the early days of my time living with a stoma. I was still mastering the skill of fitting a bag, and fitting it properly.
I was going out and I was running late, so I was rushing. Because I was rushing I had showered and gone out pretty close together.
This meant my nice, clean, fresh bag hadn’t quite had long enough to stick properly.
I slapped it on, then got dressed, and shot out the door.
I was visiting a friend who only lived a few minutes around the corner from me.
As this was the early days I wasn’t in the habit of carrying spare supplies with me.
You can probably guess where this is going. The bag came away whilst I was out at my friend’s house.
As I didn’t have any supplies I had to get my friend to go back to my house. She had to bring back fresh supplies for me.
I remember being so embarrassed by what had happened. And by the fact she had to go to my bathroom, and go through my cupboards to get fresh supplies. It was really humiliating.
There was a big lesson I learnt that day. One I kept with me for the rest of the time I lived with a stoma . I always, always, always, carried supplies with me either in a rusk sack or in the car.
But at the time, I was truly mortified.
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Number 1
My top worst moment I have had with IBD is around my daughter being diagnosed with ulcerative colitis. But also the wait we had to go through and all the waiting lists to get her officially diagnosed. Without an official diagnosis we could not start her treatment. She was getting more and more unwell as time passed.
It started at the GP. That led to a referral to a children’s unit that didn’t actually deal with medical issues.
That led to a referral to our local hospital. Which led to a referral to a much bigger specialist children’s hospital.
There were weeks of referrals and waiting lists, whilst all the time she was getting more and more ill. In the end it got so bad she was admitted into hospital via A&E.
So, Whilst not directly my own IBD, my daughter’s UC is hereditary, and watching my child go through this was far worse than living it myself.
I should say, once we got her into the system things have improved a lot. She’s now on inflixamab and is getting to grips with things. Now we have the official diagnosis, the care she’s getting is great. It was just as a parent, it was a really heartbreaking process to go through.
It’s that experience that inspired me to create Pouch Heals and do these blogs and videos.
To watch the video version of this blog post please click play below. To see more videos from Pouch Heals please take a look at the Pouch Heals YouTube Channel