The Price Tag Of IBD Week 2: Anxiety

Anxiety, well honestly where do we start 😳, it’s such a massive issue when you’re living with any type of inflammatory bowel disease!

The best way I could think to write this, so that it was relatable to everyone, was to set it out as scenarios. I thought it might help people to get their heads around what we are actually dealing with here.

So, on that note we’ll begin;

Scenario one:

You’ve got to do the school run, simple task, right? It’s a twenty minute trip, drop them off, and then home again. In total, a mere forty five minutes out of your day. You haven’t eaten breakfast, because you know that will trigger your need for the toilet. The same goes for having a drink, even water, that will just travel straight through you too. So your up, washed and dressed, dehydrated and hungry, but ready to leave. However, because you know the motion of the car will always trigger your bowels, you rush to the toilet before leaving just to reassure yourself that you’re empty.

You get in the car, you’ve been travelling for ten minutes, and your tummy starts to hurt, you feel the cold sweat appearing on your forehead and you start to feel clammy. This is your warning sign that you need to find a toilet, right now! You’re in the middle of nowhere, on a fast moving road, with nowhere to pull over. When I say the tummy pain was your warning, I actually genuinely mean that, because by the time you’ve finished reading this sentence……… it’s too late!

I spent almost two years exclusively at home because of the anxiety around situations just like this.

Scenario two:

You’ve made it to the school (cause for celebration believe me), there’s public toilets close by, so you stop and use them before travelling home. On the way home, your car breaks down and now you need to wait for recovery to come and collect both you and the car. Recovery is going to take two hours, and once again you’re in the middle of nowhere. It can’t be that bad, right, after all you’ve only just been, right? Surely!

Absolutely wrong, twenty minutes into your wait, the tummy ache arrives, and the cold sweat covers your forehead. Now what? You’ve got to sit like that until the recovery person comes, on top of that, you’ve then got to get in the recovery man’s cab. What if he smells you? What if the car smells when he gets in it? What else can you do in such a desperate situation? Can you walk to the next village and knock on someone’s door? And if you do what’s the likelihood that you’ll even make it, none! Even if you did mange the walk, what are the chances that they would even let you in?

Scenario three:

It’s a friends wedding. She lives a hundred miles away, how are you ever going to make that car journey? How are you going to be able to make it through the ceremony, not to mention a meal too. Absolutely no chance! Now you have a decision to make: Take all the risks, knowing that it’s going to be life-changing in terms of embarrassing situations arising. Or, you can try and explain your condition to her and try and express how sorry you are. However, how do you explain all of that, without the shame of having to admit also, that one of the (many) symptoms you suffer from is potential bowel incontinence. The anxiety is horrendous no matter which choice you make.

Now these are scenarios related to anxiety around incontinence specifically, but there are so many other examples.

Fatigue, my god the fatigue! You are going to have to call work and arrange a meeting, because you literally cannot make it through the day without a sleep. It doesn’t matter how many hours you sleep at night, you’re still going to need that afternoon rest too. Not to mention the fact that you are already on reasonable adjustments because you can’t leave the house at the moment anyway. What will they think of you? Will they think you are being ‘lazy’ or ‘milking it’? Will you look like you’re not wanting to pull your weight? What questions will they ask you, and how are you going to answer them? Anxiety, anxiety, anxiety.

Today you wake up, your bones hurt all over your body, you can hardly move. As a result you know that you’ve got to contact the IBD team. They are going to put you on new medication, that’s going to have a plethora of horrendous side-effects. And more than likely, you’re going to have to make a physical trip to the hospital, for someone to shove something up your bum and take a look. So now you need to start planning how you’re going to make the trip. You’ll have had a tonne of laxatives the day before, so you’ll be pretty empty, but that doesn’t stop the blood or mucus. What about if they find something more sinister wrong with you? How will your life change? What if you poop on the camera? What happens if you fart at the consultant?

For now your incontinence is largely under control, but you still only get a couple of minutes notice. You’ve decided to plan a family trip to the Seaside. After all you’ve let them all down so many times recently, by cancelling trips, adventures and simple meals out, they deserve this, and so do you. Planning involves checking out every single service station along the route, to make sure they have adequate toilet facilities, and committing each one to memory, additionally you’ll need to be aware of how far the distance/time is between each one of them.

You make it to the seaside, now wouldn’t it be nice to have lunch? After all you’ve missed breakfast to make the trip, so why wouldn’t you treat yourself to lunch. Nope, you can’t have lunch, because that will mean you’ll need the toilet even more often and even more urgently. So everyone else eats, feeling bad for you, and trying to say ‘it’ll be okay’, but you know better. So you don’t eat!

However that means by 14:00 you’re absolutely exhausted, not only with fatigue, but also with the lack of nutrition. It’s easier not to bother going at all, isn’t it?

Your body can hold onto absolutely nothing that you put into it, be that food or fluids. So the weight is falling off you at an alarming rate, we’re talking about anything from a stone to two stone a month, EVERY. SINGLE. MONTH. You’re dehydrating too and that’s bringing you a whole new range of complications. What if they’ve got it wrong, surely this is cancer, nobody loses this much weight this quickly, unless they’re dying right?

What if I do die? What will my family do? What memories will my children have of me? Will they only remember these past two years, or will they remember the good times that came before? Do my family think I’m going to die? Do they know something I don’t? Do they think I should be trying harder to get more food and fluids into myself?

Have I looked hard enough for the answers? Do I really want to take these dangerous medications, and will they even make me better, or will they potentially make me feel even worse? I won’t be able to go out in the sunshine anymore, not without being covered up at least, because these new tablets put me at a high risk of skin cancer. Am I fighting hard enough? Am I failing?

What has my life come to?

What is my future going to look like?

Will it ever get better?

Will they fix me before there’s no ‘me’ left to fix?

The list is quite honestly endless, every single situation that life presents, brings with it a whole truck load of anxiety when you have IBD. And that’s just taking about the person themselves, it doesn’t even start to touch on the anxiety of the loved ones around them.

The worst part, in my opinion, is the fact that it isn’t just normal practice for IBD Teams to have their own mental health teams associated with them. I’m positive that the majority of people living with these conditions would benefit from some kind of support at some point during their illness. Even group sessions (online and in person to be truly accessible to everyone), so that people can talk through their anxieties with others going through similar and maybe even learn some tips and tricks to manage their own anxiety. Or even to find solidarity in some small way, that they are not alone.

If only hey!

Hopefully this Blog can help in some way with people not feeling alone anymore, and knowing that they are certainly not the first person, and definitely won’t be the last, to have travelled this path.

Sending lots of anxiety reducing hugs, to all of you who maybe reading this, and going through something similar right now.

You’re not alone ❤️