My top 6 daily struggles of living with Ulcerative Colitis

1. You always need to know where the nearest toilet is.

Yes this is at the top of my list for a reason people!

Those of you who suffer with any type of Inflammatory Bowel Disease like mine, such as Ulcerative Colitis, or Crohn’s, will know that when you’ve got to go, you’ve got to go!

There is no such thing as waiting till later or until we get home, when our stomach is telling us otherwise, we have no choice but to listen to its commands.

Believe me I wish I could be that normal healthy person who can wait for hours on end until they get to the loo, but with us fellow colitis warriors, it is just not the case.

We can’t take it or leave it, we can’t drive a long journey or sit on a train full of passengers when our illness is playing havoc with our body – Unfortunately this comes on even stronger in a stressful environment, or in a busy supermarket, or in a clothes shop just as we are queuing up for the till! (Abort mission, abort mission).

And it is very embarrassing, especially when the shop keeper tells you that their policy doesn’t allow you to use their toilet, an ongoing problem today in the life of people with autoimmune illness it seems. ‘So I guess I’ll just shit on your floor then’? I’m thinking inside my head.

But I guess we can’t have everything in life can we, and I am thankful when I get home in time – (not always the case).

Chances are I could be sat at home happy and relaxed, with no major things to do that day, and I may only need the toilet once or twice, because I am not stressed, I may not have a massive amount on my mind to overwhelm me in that moment, I may be watching Loose Women – But as soon as I am back into my daily busy life – Uni work up to my eyes, running a small business and work, then BAM!

Hello Colitis my fellow friend, here to remind me that you are still here.

2. Finding gluten free options that don’t fall apart in your mouth or taste like sawdust would be nice.

This has been a major problem with me since I realised I couldn’t tolerate all starchy foods, such as bread, pasta, white potatoes, rice, the list goes on.

When I got diagnosed with Ulcerative Colitis, I knew nothing about the relationship between food and how it affected me, until I kept a food diary, then I saw that every time I ate jacket potatoes, (one of my old favourites), I would have to run straight to the toilet! Bread and pasta would make me bloat, and I ate a pizza once from a popular takeaway, I won’t name names, but I was full on sick after I ate it for hours, and I’m sure it was food poisoning.

Anyway reflections aside, I then had to bite the bullet and try and find gluten free options. This was a fun process.

So each thing I tried it still affected me, because all the supermarket products still have chemicals in them that we’ve never heard of, so I came to the conclusion after trying shop bought gluten free products, that everything I ate had to be fresh in order for me to stay well, and any bread I ate form a packet just fell apart as soon as I tried consuming it, or tasted like cardboard.

I am still yet to make my own bread, which is probably what I will have to end up doing – I don’t see myself as much of a baker.

Now I mainly eat all fresh produce and nothing from a packet with terms I don’t understand, that way I know what I’m putting into my body, and I feel much better for it.

3. Your day has to be fully planned out, including a plan B and anything in between.

This is a daily thing I have to do, because if I don’t plan my day then I get overwhelmed by all the tasks I need to get done, whether it’s exercising in between Uni work, taking a break or having to go and run some errands, it can all get too much if I don’t plan it all in advance.

So to prevent my colitis flaring, i.e. running to the toilet every five minutes due to stress, the best way is to limit the daily stresses of life, which lets face it is not easy and not fully achievable – But by planning my days the night before, meditating and taking some deep breaths before sleep, this can help my day go a little smoother.

4. Going for a brisk walk to try and burn off a heavy meal is not an option.

I know most people love a brisk walk, and enjoy burning off those calories from the meal they ate around an hour ago, for example. Don’t get me wrong, I love a good walk in the fresh air to get those good endorphins moving, and for the calorie burning, but walking after food is a no no for me.

People say things like:

‘Oh why don’t we go for a walk along the seafront and burn off those fish and chips.’

‘A brisk walk will do you good’. (I can assure you, no it won’t).

Then they say things like:

‘It won’t make you feel any better sitting down all day, you have to get moving’. (Trust me when your in a colitis flare-up, your only goal is to not shit your pants and get to the toilet in time.)

‘Exercise is good for you, it has so many benefits, and it will give you more energy’?

The list goes on, you see where I’m going with this.

I am fully aware of the benefits of exercise, which is why I run 3-4 times a week – But I do it on an empty stomach, having had one black coffee and no meal beforehand, which keeps my runners trots at bay!

Also, because I have Colitis, my body doesn’t digest food like a normal healthy person, which means I can bloat straight away after eating, or need the toilet straight after eating, so walking so soon after food does not help my inflammation levels.

5. We are never just tired – We are the definition of chronically exhausted.

So one thing I am is always tired due to this condition.

It gives me chronic fatigue on a daily basis, so no matter how much sleep I’ve had, no matter how happy and joyful I am, or appear to be, the tiredness is always there.

This affects my energy levels on doing regular daily tasks, such as meeting friends, going food shopping, going to put fuel in my car, just those small things that take all my physical and emotional drive to get up and go, which is also where the anxiety and depression stems from.

People assume you should have the same energy levels as them, I am afraid this is just not possible with an autoimmune disease, you have to go at your own pace.

Some days I will go for a five mile run, others I will lay in till ten and watch Netflix in bed all day, because my body needs the rest. If the inflammation in my body is too high, I am fully wiped out, my body can’t cope, and it goes into shutdown mode, which means I cannot always do the things I want to do.

The feeling of lack of energy really can knock me down, and makes me question if I’m good enough, in my relationships, in my work, because I am worried that I come across lazy, or just not with it, like a normal healthy person might feel.

It also affects my memory, and gives me brain fog, which can sometimes come across to people that I am not listening and not understanding what they are saying, but in fact I do understand and I do listen, it’s just I might not be as enthusiastic because of the chronic fatigue taking over.

All I can do is try to make people understand that the fatigue and exhaustion with this disease is very real, regardless of how bubbly and energetic I may seem on the outside, but for someone that doesn’t suffer with an autoimmune illness, it’s very hard to fully acknowledge.

6. You always get judged for using a disabled toilet, because ‘you don’t look sick’.

This is one of the most annoying daily problems of all, because people assume your young and fit on the outside, and they assume someone who looks so well cannot possibly be disabled in any way, even if it’s hidden.

There are so many hidden disabilities out there, and so many people are quick to judge, just because you don’t use a wheelchair or a walking stick.

I do however feel something is being done about this issue, and I am so happy to see so many shops and supermarkets supporting the ‘not every disability is visible,’ sign on the toilets and public areas, it is a move in the right direction for chronic illnesses like mine.

I am what a woman with a hidden disability looks like.

7 thoughts on “My top 6 daily struggles of living with Ulcerative Colitis

  1. Thanks for sharing such an open and honest piece. While I don’t have IBD, I can definitely sympathise when it comes to limiting stress and needing to know where the nearest toilet is โ€“ when my IBS was at its worst, I used to panic if there wasn’t one nearby (not helpful in terms of limiting stress haha). Wishing you strength in combatting these daily struggles.

    Gemma x


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