• Living with Ulcerative Colitis as a young person

    Your IBD journey is a rollercoaster, just keep riding it.


    I was diagnosed with Ulcerative Colitis age 13, had emergency surgery to remove my colon (ending up with a stoma bag), then three more lots of surgery age 14/15. I no longer have a stoma bag but still suffer symptoms of IBD.

    – IBD isn’t just Crohn’s disease. When people ask, I normally say ‘you know Crohns disease? What I have is similar to that’. Ulcerative Colitis is less well known, and only affects the large intestine, whereas Crohn’s can affect the whole digestive tract.

    – You get REALLY tired. You might not realise it at the time, but at times, your body is fighting everything quite hard, and struggling to keep your digestive system running, which really takes it out of you, and you often won’t have as much energy as other people. This can become quite frustrating on the two extremes – either people don’t realise when you’re feeling pretty rubbish, or the opposite, when parents get a little bit too concerned that you can’t handle the busy life in your 20s! An expression my parents love to use is ‘don’t burn the candle at both ends’, but when you are living with Ulcerative Colitis, you do want to go out and have fun with your friends – there’s no point being stuck inside – even if the day after a night out does zap you of energy, and not just from the normal hangover!

    – You might look ‘well’, but be on constant medication. Some people will have to take medication for the rest of their life, but hide it very well. People will always be surprised when you say what is actually going on inside your body!

    – You can be diagnosed really young. It’s scary the amount of kids even under the age of 10 who suffer from it.

    [Editor: Research suggests as many as 1 in 4 people newly diagnosed are under 16. Some estimates suggest as many as 4000 children and young people may be diagnosed every year, and an increasing number are being diagnosed as babies and toddlers. Younger children (5-10 years) tend to have more severe disease, and will have disease for a longer time, including through puberty.]

    – IBD can’t be cured by just your diet. Every sufferer at some point will be told by people ‘why don’t you just change your diet?’ – it doesn’t really work like that – Ulcerative Colitis can be affected by lots of different factors.

    [Editor: Sometimes a particular food may seem to cause problems but it is dangerous to try dietary manipulations without the supervision of a doctor or dietitian as avoiding too many foods will lead to further malnutrition. Drugs, including steroids and other options, such as a range of immunosuppressants and biologic treatments, may be needed to suppress inflammation and bring about remission. In the most severe cases, surgery may be required.]

    – It’s not just a ‘dodgy tummy’ – it’s a chronic, incurable disease, involving a lifetime of medication, vomiting, diarrhea, fatigue, weight loss, joint pain – not everything all at once (hopefully), and not everyone will suffer from every single symptom – in fact, you begin to feel lucky when you’re only suffering from one of them!

    – The media and charities are doing a good job of raising awareness of the condition, but there is still lots to be done. A lot of people don’t understand it and dismiss it as just ‘having a funny tummy’. Sometimes I have to plan my journeys around whether there will be ‘friendly’ pubs and cafes around where I can use the bathroom facilities with no questions asked. When you’re abroad, McDonalds is a saviour! If you’re in the middle of a flare up, even something simple like an hour’s train journey brings its own complications.

    – Your quality of life won’t be as great as regular people, and as much as you appear normal – having a good job, social life, friends etc – it can sometimes be demoralising to realise that you’re having to cope with a multitude of medical problems on top of all the stresses of everyday life and the rising costs of living!

    But having said that….

    – You begin to realise that if you can live with something like Ulcerative Colitis which will affect you every day of your life, you can overcome anything (and quite a lot of regular problems begin to seem insignificant!). All nighters in the library and uni sports team initiations? Done. Not enough time to do food shopping? Simple to solve. Been rejected from a job? There will be others. That one probably had rubbish toilet facilities anyway!

    I was diagnosed with Ulcerative Colitis age 13, then over the next two years had four operations to remove my colon (resulting in a stoma bag) then have an internal pouch made. Fast forward 10 years, and I’m living my best life (well, as good a life as you can lead with IBD!). I graduated from Nottingham University two years ago and now work in sports PR in London. I’m really active and play lacrosse and netball three times a week, as well as having a fantastic social life. Your IBD journey is a rollercoaster, just keep riding it.