Days in the Life with Ulcerative Colitis

Here is Becky with her first blog for TOTM!

So last October I was diagnosed with ulcerative colitis, which is defined by the NHS as: “a long-term condition, where the colon and rectum become inflamed.” That’s about as fun as it sounds.

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As this is my first post, I was really struggling with a way of outlining ulcerative colitis in a way that would explain what it is, does, how it’s treated and how serious it is to people who haven’t heard of it, to introduce my personal experience of it and also to give a concept of the scope of this illness.

But…that’s a lot to ask of a blog post. Also, I think you’ll agree, it doesn’t exactly sound like a laugh a minute. So instead what I’m going to do, is quickly (cough) summarise my history with the disease, and then give you three days in the life: a bad day, a middling day, and a good one.

So. I’d been noticing symptoms of ulcerative colitis, on and off, for two-ish years before I was diagnosed, so the diagnosis itself didn’t come as a surprise to me. My dad has had the illness since long before I was born, so I’d grown up knowing vaguely what it was and how much it affected his life – which thankfully, from an outside perspective, was not much. That said, in the ten months since I was diagnosed I have been on a learning curve so steep it’s basically been vertical. I’ve been on and off various kinds of medication, and have yet to get the condition under a more permanent kind of control; but myself, my doctor, my glorious nurse and my mother’s furious googling are onnit.

A Bad Day

We might as well start with the crap (expect a lot of toilet puns. It’s not classy or clever but you’ve got to get your kicks where you can!).

2.45am – wake up to an instant churning and cramping in my stomach and have to make a dash for the bathroom. Symptoms have been getting steadily worse for a week or two at this stage, but this is the first of recent occasions it’s gotten me up in the middle of the night. Not an encouraging sign.

3.15am – get back into bed with a still-aching stomach and try to get back to sleep.

7.45am – my alarm goes off. Feel a swell of dread as I’m waking up, because my stomach is not happy. The pain caused by colitis varies, but for me generally takes the form of abdominal cramping, with the bizarre additions of feeling as though someone is moving furniture around in my insides, or that my organs are doing Mexican waves.

8.15am – return from another trip to the bathroom. It’s not looking good – there’s basically just water and blood coming out of me and I feel like my guts are being put through a mangle. Get back into bed even though I should be getting ready for work, giving myself half an hour to make sure things aren’t improving before making the dreaded call in sick.

8.45am – make the executive decision that I can’t make it into work today. Have only had to take a few days off for my colitis since being diagnosed, but as I’m an uncontrollable people-pleaser and only work part time, it causes me a supreme amount of guilt anyway.  

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9.30am – call in sick. Have to laugh at the Britishness of automatically answering the question ‘how are you?’ with ‘I’m alright, thanks’ despite having spent the last fifteen minutes worrying if I’ll actually be able to make it through this phone call without lobbing the phone at my boyfriend and running to the bathroom.  

9.50am – I take the day’s first batch of tablets and try to get back to sleep – I’ve found that the longer I can sleep the better my stomach is when I eventually get up. Thankfully, I happen to be naturally blessed with an almost superhuman ability to sleep far more than any human being wants or needs to.

10.20am – drift awake. Assess stomach: not good. Go back to sleep.

10.55am – drift awake again. Still churny and painful. Go back to sleep.

11.50am – wake up and, finally, feel like I can actually get up. Pad cautiously around in my dressing gown, sipping a glass of milk and keeping close to the bathroom. Am experiencing enough fatigue at this point that I don’t have the energy for much more than just sitting. So I sit, and go to the bathroom, and feel variously sorry for myself. Pete (boyfriend) is working from home and periodically looks in to bring me some water, ask if I want to eat anything (I don’t) or give me a cuddle. Call my mum to whinge about how rubbish I feel (as with her I can go all-guns-blazing for the Self-Pity Oscar and she still has to love me). Am very, very lucky and grateful to have wonderful people around me who look after me.

3pm – head into town for an appointment with the IBD nurse at the hospital. Am nervous about the walk in, but haven’t eaten anything so no disasters.

3.30pm – see my absolute heroine of an IBD nurse, who spends the first five minutes of our appointment telling me that she’s a bit emotional because she’s just had a last appointment with a long-standing patient who’s moving to Dubai. I could kiss her for instantly making this feel like a conversation between two people, rather than a clinical analysis of my most recent bowel movements. I explain what’s been happening, she offers some solutions and ultimately sends me off with blood test packets and prescriptions, and the promise that I’ll call her if things don’t improve. I adore her.

4-5pm – rattle through my seventeen-zilllionth blood test of the year, head off to the pharmacy and wait around for my prescriptions.

5pm – feel able to eat something for the first time today, and for reasons best known to my guts, that thing needs to be a muffin, along with the second batch of tablets. Feel as full as if I’ve had a five-course meal after one raspberry muffin (and I speak as someone who has been known to eat an entire large Dominoes pizza in one sitting, by myself).

5-7pm – laze around whilst Pete makes tea for some friends we have coming over tonight. He’s asked me if I wanted to cancel three or four times today, but frankly I’m not sure when I’ll be feeling better, and I resent missing out on nice things because I don’t feel well. This attitude can backfire.  

7-11pm – make possibly the least sparkling conversation of my life with our friends, and experience a lot of frustration at being unable to eat one of my favourite meals. I rip a tortilla in half and construct a tragically tiny burrito, but even that’s a struggle. It’s lovely to have the distraction of friends, but it comes with the added anxieties of trying not to be noticed every time you slip out to the bathroom and make all sorts of colourful and embarrassing noises.

11.30pm – go to bed, after being as sure as I can be that I’m done with the bathroom and taking my last (and biggest) batch of tablets.

A Middling Day

5.30am – wake up; my stomach’s not terrible, but it’s definitely having a good old churn, and I still have to abandon my lovely cosy bed for the cold bathroom I’m resenting more and more.

8.45am – I’m up, dressed, ready for work and hovering anxiously. Sometimes colitis and I do this little dance where I know I’ll need to go to the bathroom in the near future, but all feels calm and well until I’m pretty much bang on halfway between home and work. There have been occasions where I’ve gone through the park at the end of my morning commute like the f***ing Flash.

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9.15am – make it to work. Not feeling great, but my colitis is always at its worst in the mornings and I take a lot of comfort in knowing I’ll feel better in an hour or two.

11.30am – I notice I’m feeling better when I realise that the bubbling, cramping sensation in my stomach has given way to good, old-fashioned hunger pangs.

1pm – I have some lunch, and though I’m a bit cautious for an hour or so afterwards, I feel fine.

5pm – head home from work, and haven’t thought about my stomach for hours. Looking forward to making and eating dinner with Pete, and continuing not to think about it for the rest of the day. I am constantly asked if and how my diet has changed in response to my illness, and I’ll write a full blog post on it at some point, but the short answer is: no, it hasn’t.

11pm – go to bed, hopefully feeling alright.

A Good Day

Pretty much like one of your days, only with a grumpier morning and more tablets.

Whoops, that was still really long. Sorry! Hopefully it gives you a sense of my ulcerative colitis at least, though this is far from a summary of the illness as a whole. I haven’t included the worst days or the best days, for the sake of fairness, but can happily say that the vast majority of my days since diagnosis have been of the Good or Middling variety.

There are many, many more aspects to ulcerative colitis and my relationship with it that I’ll go into in future; hopefully some of them will come in under 1600 words…

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6 thoughts on “Days in the Life with Ulcerative Colitis

  1. pepmorgan63 says:

    Thank you Becky for sharing a bit of what your life is like with UC. When people ask what it is we always end up talking about Medical definitions but to gain some insight into what it is actually like for you to live with it is invaluable.

    Liked by 1 person

  2. Chris says:

    I could have written this!

    I have Crohn’s and I emphasise so much with the morning hover, “I feel like there’s more to come out, but I need to leave, but I know it will be the 20 minutes I’m not near a loo I’ll need to go, but I’m going to be late” then I spend the entire journey worrying and being hyper aware of every gurgle in my gut!

    That first middle of the night toilet visit is when I know my flare up is getting bad. Then after months of it the first night I don’t go is such an acheivement!

    Liked by 1 person

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