20 things you’ll only know if you have Inflammatory bowel disease

Inflammatory bowel disease (IBD) is a term used to describe the diseases Crohn’s disease and ulcerative colitis.

While both diseases affect a sufferer differently, many symptoms can be very similar.

Here are 20 things you’ll only know if you have IBD.

1. People tend to confuse it with IBS

Inflammatory bowel disease and Irritable bowel syndrome are two completely different things. IBD is a term used to describe Crohn’s disease and ulcerative colitis.

IBS is a long term condition affecting your digestive system.

If you’re a sufferer of IBD you’ll know what it’s like when people confuse your IBD with IBS – IBS isn’t glamorous either but it’s not the same.

IBD is an incurable illness, IBS is a condition which is non life threatening.

2. Talking about poo becomes normal

You become comfortable talking about your toilet habits. It’s not uncomfortable, it’s just everyday life for us. There is no taboo talking about your bowel movements when you suffer from IBD. It’s just normality.

3. You’ve been pitched a product that will magically cure your IBD.

The chances are that you’ve had someone contact you a least once since diagnosis claiming they have the ‘cure’ for your IBD. This could be anything from juice drinks, tablets to aloe vera. Unfortunately drinking some juice drinks or taking some capsules will not cure you of your IBD.

IBD is currently an incurable illness.

Whilst some of these products may help one person, that doesn’t speak for the majority. If you are a sufferer of IBD you know some days how desperately you wish the disease away – these aren’t cures.

4. You may be given medication that may make you worse before better

In some cases medications prescribed can make you feel worse before you start to feel them working. You desperately want it to start working straight away but of course this isn’t always the way. So, we power on through and hope that this is the right treatment for us.

5. There are a lot more symptoms than just going to the toilet

Yes we do spend a lot of time on the toilet but that isn’t the only symptom of IBD. Things like stomach cramps, blood, diarrhoea and weight loss including many others are all symptoms caused by IBD.

6. You get tend to get misdiagnosed with everything under the sun before IBD

The chances are that when you started to feel ill, you were misdiagnosed with something other than IBD. For females it’s commonly misdiagnosed as ‘women’s troubles’ – unless you haven’t already been told you have the dreaded IBS, of course.

It can be frustrating when you know it’s not any of these.

7. You don’t get embarrassed anymore

Poo? So what. We don’t tend to get embarrassed anymore. We can’t really do much about our IBD other than try and aid it into remission. We tend to talk openly. For any non-sufferer this might be embarrassing but for some sufferers of IBD we don’t mind talking about it, we can educate people who don’t understand.

8. As much as people try to sympathise, they’ll never understand

It’s easy for someone to say ‘I know the feeling’ – but they don’t. Unless you’re suffering, you have no idea the physical and mental impact it has on your body and your life. You can try to explain or educate someone but will they ever really understand?

9. Accidents can happen

You’ve more than likely had an accident because you haven’t been able to reach the toilet in time. With IBD the urgency can sometimes take over and you have no control over your bowels. It’s almost like you’re running a marathon but the finish line keeps moving further and further away – are you going to make it?

There’s been a few times where accidents have happened to me and now I’ve learned that most of the time it’s out of my control. If you don’t laugh you’ll cry.

10. It can result in surgery

In some cases of IBD, when all medication has failed – or if it has gone un-diagnosed for too long – the decision is made to remove some or all of the bowel. Dependant on the severity of the disease in some cases the patient can have the entirety of the bowel removed.

11. You get really good at finding the nearest toilets

You’re like a ninja, you need to get to the toilets in record time. You don’t want to have an accident, so you plan out your route between leaving the house, making sure you know where to and where not to go. You try to be picky when it comes to cleanliness but sometimes when you’ve gotta go, you’ve gotta go.

12. You know the Bristol Stool Chart off by heart

Seriously… it is a thing. If you’ve ever had a hospital admission or been presented with this by your GP you’ll know what we’re talking about. A chart that outlines the size, shape and consistency of your poo! During hospital admissions you usually fill the stool chart in every time you open your bowels.

You become a master at knowing when things are not right and you’re able to describe your poo perfectly.

13. You’re judged for using disabled toilets

Sometimes we have no choice. We absolutely can’t wait for you to finish using the toilet. If we did, we’d have an accident and no one wants that.

Not all disabilities are visible and comments such as ‘you shouldn’t be using these – they’re for disabled people only’ aren’t acceptable. Would it be acceptable for us to tell you that you can’t use a toilet when you’re desperate? No.

14. It’s much more than just a ‘poo disease’

While IBD is a lot to do with your bowels, it can affect other parts of your body too, including your skin, your joints and your eyes. Not forgetting the impact the disease can have on your mental health.

15. Bowel prep isn’t great

Sufferers of IBD will usually undergo investigative procedures a few times in their lives. Colonoscopies usually consist of bowel preparation – if you’ve ever experienced this you’ll know what I’m talking about.  Firstly you’re advised to avoid most foods and stick to light snacks.

The dread bowel prep begins and there is no possible way to make this sound ‘nice’ – it’s honestly like drinking the worst possible drink you could ever imagine. Though you can add things to it to make it taste ‘nicer’ – this doesn’t make much difference.

However you will notice it getting to work quickly. It can only be described as the heavens opening and you releasing every single thing you have stored in your body. Stay near the toilet.

16. Hospital is like your second home

You’re on first name terms with the receptionists, the nurses and porters too. They know who you are, they know your family.  You don’t enjoy your hospitals stays at first – who does?

Blood tests and procedures become routine and you sometimes fear them less each time.

17. You’ve had some questionable hospital experiences.

Anything from another patient opening their bowels on your bed, to patients threatening to kill you… you’ve had it all.

18. You become a lot more knowledgeable on the illness

While you’re no expert, you are a lot more knowledgeable on the diseases than you were before diagnosis. You’re able to confidently talk about illness and learn more about it. When you talk to non-sufferers they’re amazed you know so much.

19. You’ve been told changing your diet will cure you

‘Eat something healthier, you won’t have any issues’ – this is the last thing we want to hear. It’s most definitely not the case, some of the healthiest people can sufferer from IBD. Changing your whole diet will not cure your IBD. Making adaptations to your diet and cutting out potential trigger foods can help your symptoms in some cases.

20. Flare ups aren’t pretty

Let’s not sugar coat it, when your disease is flaring and you’re suffering badly, it’s not easy. You just want to give up, you feel like the only safe place is the toilet and nowhere else. You’re exhausted and you just want it to stop.

To all IBD sufferers out there, please remember that you are some of the strongest, most inspiring people around. Never let your illness make you feel any different. I salute each and every one of you.

Words by James Conlon

6 thoughts

  1. Thanks so much for writing this! I want to send it out to some friends and family, but even that wouldn’t really do anything.

    What I find crazy is that, even though you listed 20 things here, it doesn’t even scratch the surface of what actually goes on. Each paragraph (which you’ve written beautifully) could potentially be expanded into a full book.

    UC sucks.

    Like

  2. I got told this may i have Crohns, it took four yrs different doctors saying it refux, last doc sent me colonoscopy and bingo,cronhs,dont no how ling had it,howeva started having flare ups after getting gallbladder out,i no there no cure, but have changed my diet,caffeine free, and feel better,not so many flare ups, like what i just read, makes lot of sense! got to have it,to understand it…..

    Like

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