Guest Writer Nick Talks Honesty

Hi, my name is Nick, I am 25, and was diagnosed with Crohn’s disease when I was 13 years old.

My condition has been better in the past few months, so I’ve wanted to be able to help others while I am in a position to do so. I started a twitter account called ‘Awkward IBD’ (@awkwardIBD) detailing the ‘lighter’ side of IBD.

In my last post I talked about researching your condition and how sometimes it's better not to read up too much! 

So what would I next tell Little Nicky? (My 13 year old, younger self, not the son of Satan as portrayed by Adam Sandler… ) It would be to be honest with those around you.

This is probably the biggest thing I have struggled with, with regards to my Crohn’s. I guess in this respect, I am your archetypal male. Whether it is bravado, or whatever you will call it, there is a reluctance because of how others will perceive it. I will state very clearly right here, I do not advocate telling everyone you meet, the ins and outs of your condition, especially if you are in school… Rightly or wrongly, there could be people who don’t know you very well, or are too immature to fully consider the hurt it will cause you, who will judge, or make fun of your condition. This is obviously not right, but we don’t live in a perfect world, and my advice here is for you to get by the best you can.

Be honest, not only with the symptoms of your condition with those close to you, but also how it is making you feel. For me, my reaction is to try and make it look like I am taking it on the chin, that I can cope with everything that comes my way. That is who I am and who I want to be. However, if I am having a bad day and snap at someone, or act strangely trying to cover it up, the other person, has no idea anything ‘extra’ is wrong. It can very easily damage your relationships if you let it. You have to be able to swallow your pride, and let the people around you in. You can still be the person they rely on, who people look to when they need help, without constantly having to keep up a front. It will actually help you to be there for others, when they themselves feel they can help you in return.

A slight aside, but one that I feel needs to be mentioned; I have seen people writing online, that they have ended relationships or friendships, because they think they are too much of a

burden, and that they are saving the other person from having to deal with them. This is nonsense! If you have someone who you have been totally honest with about your condition, and how it makes you feel and they STILL want to be a part of your life, making a martyr of yourself will just serve to hurt EVERYONE involved. It may also cause you more stress and harm your condition (if we are looking at this from a purely selfish and medical point of view). Finding someone who truly wants to be with you, and will take you for all your flaws, whether medical, physical, emotional, or in my case, an unhealthy dose of all 3, is the greatest thing in life, so don’t push it away because of, ultimately, how you perceive yourself.

Being honest with your school or employer is also a necessary step. They don’t need the full ins and outs, but what I’d term a ‘working knowledge’ of your condition is essential not only for them, but for you. Let them know how it will affect you, and whether you need any additional assistance.  Schools, in my experience, will be very understanding, and give you as much support as they can. Work, has also been very good, though I understand some people’s reluctance in this respect. Personally I found if your condition does make any demands of your employer, show to them that you are doing all you can to negate any difficulties, and they will be very appreciative and understanding.

Finally, and for your health, this is probably the most important. IBD can, and unfortunately probably will, involve pain. Pain is a ‘great’ motivator for human beings, and unfortunately in most cases, a negative one. As a natural instinct, our actions will alter, whether consciously or not, to avoid pain. When it comes down to choices of medical treatments for instance, this is not necessarily a good thing. No man is an island, and this is a good example, where, having someone you can be honest with AND who can be honest with you, will benefit you greatly. I put off having treatments which involved needles and injections for years, I am probably in a worse state now because of it. However, I met my girlfriend, and she was the first person outside of my family, that I have been honest with about my condition. Making that first step and opening up to someone, and their reaction not being the sum of all those horrible thoughts you’ve had, is a very (and I hate this word, but it fits) empowering feeling. Having that extra motivator was the final push I needed to seek out the treatments I had feared for years, and they have made me healthier. Not healthy, but healthier… and I’d hate to think what state I may be in now if I hadn’t. For as long as I could remember, IBD was me vs my body. Now it was 2-on-1, and with every person you tell, it gets easier and easier.

Your own judgement can be clouded with regards to your own condition, so having people who know you, and can take a step back and see the bigger picture, will help you make the right decisions.

I’ll sign off with my favourite quote, I can’t remember who said it, but it stuck with me, and demonstrates perfectly why facing IBD on your own, in your own head, will never be your best course of action:

“You cannot be your own confidant… Surround yourself with people you trust to tell you things that you won’t tell yourself…

                                                        … then listen.”

IBD and the NHS

Talking to your doctor or nurse

Having IBD means that you are likely to see your GP and consultant more frequently than other people and so your relationship with them may be somewhat different. You may perhaps find your doctor saying things you’ve not heard before, like: “We’ll try this, but I don’t know if it will work.” Some patients find this honesty refreshing; others feel rather unnerved by it, or even angry. They think: why don’t the doctors know? If this is a very different approach from your previous experience it may take time to get used to it. Talk to your doctor about it if you continue to feel worried or unsure.

They're here to help, so don't hold back!

You may also be asked to take more responsibility with your medication. For example, your doctor may encourage you to experiment a little, to see what suits you. So it’s worth asking the doctor or nurse exactly what limits you can go up to, what you can take with what and so on. Our booklet Drugs used in IBD and our more specific Drug Treatment leaflets give more information about the different medications that are available for your illness.

Before you see the doctor, think of the important questions you want to ask and make a note of them. Make sure you include any changes in your symptoms or in how you are feeling. It’s amazing what you can forget when you’re actually in the surgery. 

Finding the right words

Some people with IBD feel embarrassed talking about their symptoms even to their doctor, but remember that doctors and nurses are used to discussing all bodily functions. Here are some words you might find helpful to use when talking to the doctor or nurse: ‘Motion’, ‘stool’ or ‘bowel movement’ are quite clear and straightforward. 

But they will be used to every other word in the book, so use what you feel comfortable with. If they ask you to describe your stools, you could describe them as ‘like toothpaste’, ‘like a cowpat’, ‘like sheep’s droppings’. Other words and phrases you might find useful are: ‘urgency’, ‘having an accident’, ‘fear of not getting to the loo in time’, ‘explosive diarrhoea’, ‘gas’, ‘flatulence’ or ‘wind’. These are just suggestions – if you think out your own descriptions in advance it can save possible embarrassment in the surgery.

There's no right or wrong. Getting your point across is the main thing here. Don't hold back!