Nearly five years being officially diagnosed living with a chronic gastrointestinal illness, I thought it was time to share what a day can be like living with irritable bowel syndrome. Firstly, no day is ever the same – it depends on how much I eat, when I eat, the speed I eat and what I eat.
Symptoms vary from day to day drastically and I am always trying to learn about how to control new triggers with a food diary. Irritable Bowel Syndrome although considered a common condition, has become more complicated for me.
I also have Ehlers Danlos Syndrome III, Mast Cell Activation Disorder, Gastrointestinal Reflux disease (with more gastrointestinal investigations pending) and this is what one of the worse days with Irritable Bowel Syndrome look like:
The Things Wikipedia can’t Tell you About Living a Day with Irritable Bowel Syndrome
*Alarm bells* ringing.
“It is that time already, time to get up?”
These moments are the nicest of the day because I normally am symptom free.
Then as I move to get out of bed, I realise symptom free?
That was too good to be true, and pain has greeted me in full force. I put my hot water bottle that has gone cold to the side, hold my bruised stomach as precious as a new-born child. I try to think what I ate and drank yesterday that could have made me so bloated and swollen. I throw on about five outfits around my room to try and cover my food baby.
As all this commotion has been going on, and I have missed breakfast yet again, and notice I am going to be late for work. As I waddle to the bus stop, knowing I can’t carry my weight if I need run for the 8.13am bus, I have a 50:50 chance of missing my eyes fill with sadness.
“Why did I even bother to set an alarm?”
“Why didn’t I call in sick?”
“How on earth am I going to get through another day of pain?”
I smoke two cigarettes to try and open my bowels and question if it is worth it to play Russian roulette and fuel my body finally with breakfast. This may sound extreme, but due to my acid reflux I don’t know if I will be cursed with throwing up, severe constipation or torrential diarrhoea in the mornings. If I forget my medication, on a really bad day, it is all three.
Most people, with a gastrointestinal illness will tell you mornings are a nightmare and if we could sleep through them and the pain – we would.
Although, to live a functioning life we just have to grin and bear it and brace ourselves for the first dose of food. I mean it should be gluten and lactose free food that is, I normally settle for free fruit. A few bites in, it’s a mind over matter type of test as I try so hard not to vomit in the bin. I open my draw and take anti-nausea pills, mast cell stabilizers and anti-histamines.
Other people can’t see Irritable Bowel Syndrome, just that I am a gassy individual, that frequently suffers from abdominal pain.
Within 5 minutes, I discretely walk fast to the disabled toilet. Rummaging around for the air freshener spray, praying that no one is stood outside and wipe any sick from around my mouth. I check for blood in my stools and if it is present, I know it’s set the tone for a hell of a bad day.
To the disgust of some colleagues, I have farted and burped out loud, hooray I have got breakfast out of my system.It is around 9.20am and I am now ready to start work. Breakfast has exhausted me, so I reach out for my caffeinated drinks to give me energy to actually start work.
A few hours have passed and now it is lunch time. On a really bad day, there is no lunch time because I can’t put my body through another few hours of hell. On a day lunch does occur, I walk to a nearby supermarket. As I keep an eye on the time I read through all the packaging, for my never-ending list of food allergies. These include: wheat, nuts, crustaceans, garlic, plums and apples. Then there’s the heavy intolerance to gluten , lactose, pork and tomatoes.
Sometimes, there is literally nothing I can eat in the local supermarket – Crazy, I know. So I take something I shouldn’t have.. Itry and get it out my system quickly or go hungry. My therapist has stated eating something I am allergic or intolerant to is considered self-harm but if I have run out of food at home, I fell I am literally left with no choice.
On a day, I eaten bad foods for me, I still note them down but I become weak and lethargic. There is nothing I can do but take another three trips to the disabled toilet and then spend my lunch break resting. You can find me, asleep with my head on the staff dining table in the dark, trying not to move. This gives my body time to adjust to the poison I have fed it.
Despite Irritable Bowel Syndrome, I always try to have a productive day at work because I am on an industrial placement as a part of my Uni course. Although, some days I still get more work done than others. I find student life a bit easier because I can sleep away the pain multiple times in the day. However, this brings its own challenges like waking up to miss lectures and of course meeting deadlines.
The work day is over and it’s time to head home. I then have to think if I have plans, and if I do – cancel them. I am so exhausted I can’t even cook dinner let alone face socialising. Sometimes friends understand, other times they are annoyed and to be fair a life with Irritable Bowel Syndrome can become quite lonely, rapidly. I get stressed I have unfinished Uni work, haven’t done any art for my charity fundraiser, or written another blog post.
With no boyfriend, I take a bubble bath, slip into my soft pyjamas and put my electric blanket and Netflix on. I take a quick nap and then have to wake up to take never-ending list on medication. You would think with no dinner for energy, I would sleep throughout the night but I am normally in so much pain for this ever to happen. If I need to give body some food I will put something quick in the air fryer or eat some crisps and fuel my body with smoothies. I have to be very careful at dinner time because if I eat anything more to trigger my symptoms I will be in bed for the next few days like a zombie.
Shock, horror, I need to the toilet again.
Now I am constipated, and I have to find something to squeeze to try and open my bowels and hope that piles don’t come out. I smoke a few more cigarettes and then try again. I make up a new hot water bottle, shut my eyes and as the sleeping tablets finally kick in, I fall asleep in the early hours of the morning.
Hoping tomorrow will be more productive and involve a little less torture.
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Like what you see?
If you enjoyed learning about my personal experience with Irritable Bowel Syndrome, you may enjoy a short poem I wrote about it.
A Devil Disorder in Disguise: An Original Poem about Irritable Bowel Syndrome
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