World IBD Day: Living with Ulcerative Colitis

In the UK, 1 in 123 people have Crohn’s or Colitis. That’s more than 500,000 people. Here at The Mix, we’re shining a light on IBD this World IBD Day. This is Ciaran’s story...

My name is Ciaran, and I was diagnosed with ulcerative colitis (a form of IBD) in 2018, aged 21.

My symptoms started in my early teenage years, but it took me a long time to get diagnosed because of my anxieties around what was going on with my body, and the absence of a support network. In this article, I hope to share some information about IBD and what it’s like to live with ulcerative colitis.

What is IBD?

IBD stands for Inflammatory Bowel Disease – a group of conditions characterised by chronic inflammation of the digestive system. The two most common types are Crohn’s Disease and Ulcerative Colitis (UC).

IBD can cause:

• Cramping pains
• Frequent and urgent diarrhoea, and rectal bleeding
• Swollen joints
• Mouth ulcers
• Tiredness and fatigue
• Lack of iron (anaemia)
• Losing weight and not wanting to eat
• Inflamed eyes
• Anxiety and associated mental health conditions

However, everyone is different and how you feel can change over time.

(Credit: Crohn’s & Colitis UK)

What was it like being diagnosed as a young person?

When I was diagnosed, I felt relieved that I finally knew for sure what I had been living with for so many years, and that it can be treated. However, I was worried about having a lifelong condition, specifically what my future would look like both in terms of quality of life and treatment options.

Relatedly, I felt a sense of loss around my past and future. I thought about how different my life would be without UC. I was also embarrassed at having something ‘wrong’ with me, particularly a bowel condition given the stigma associated with that part of the body.

Navigating school

School was really challenging – I was trying to navigate the usual difficulties of teenage years (e.g., relationships, exams) while attempting to manage and hide my symptoms from others.

However, the nature of UC and long days at school meant that it wasn’t always possible to keep my symptoms hidden. When people did draw attention to my frequent toilet use, I would try to explain away with excuses like “I was only going for a wee” or “I must have eaten something that didn’t agree with me”.

In order to prevent others from knowing exactly what was going on, I developed a set of unhealthy coping mechanisms and associated anxieties that I’m still trying to work through today.

Navigating university

University was a welcome change to school – it came with a greater freedom that meant I could better hide my symptoms from others. However, certain aspects of my university experience proved challenging due to my UC.

For example, early starts can be very difficult for me, and there were multiple key modules with 9am lectures that I was unable to attend and that were not recorded. Certain lecturers I was close to knew about my condition and that my absence wasn’t a lack of commitment; others didn’t know and I worried about what they thought of me. Either way, I felt like I was fighting an uphill battle, striving to compensate for my absence at lectures through high grades.

I had one lecturer who would draw attention to anyone that left their lectures early. In order to avoid humiliation, you had to let the lecturer know of your need to leave before class. How nice it would be to be able to predict the onset of ulcerative colitis symptoms in advance! How handy that would have been for my calendar – today at 4:20pm I will have severe abdominal cramps and need to rush to a bathroom. Needless to say, if I felt even slightly unwell on the days of such lectures, I would not attend.

Unfortunately, many things are not as accessible as they should be for people living with chronic conditions, and higher education is no exception. It is far from fair, and requires a lot of emotional labour and patience, but part of life with a chronic condition involves navigating inaccessible social systems to find the best solutions for you.

Treatment and management of IBD

My experience of the treatment and management process for IBD can be best described as trial and error – it’s about finding what medication, or balance of medications, works best for you; trying to stay in remission (symptom-free) for as long as possible; and exploring new medication/treatment options if you experience flare-ups.

The most challenging part for me has been accepting the uncertainty associated with the condition – it can be difficult to deal with unexpected flare-ups (which, in my case, happen to occur at particularly unfortunate times, like before going on holiday!) and medication that previously worked for you no longer doing so.

However, in recent months I have become more comfortable with this uncertainty.

Two things have helped me with this:

• Appreciating that uncertainty is a natural part of life by working with an IBD specialist psychologist
• Better understanding treatment options by building a relationship and communicating more with my IBD nurse

Living with any chronic condition requires looking after both your physical and mental health – but this is especially important with IBD, given the intimate link between the gut and the mind!

Acceptance

Coming to terms with having a chronic condition includes acknowledging that you will sometimes require adjustments and need to advocate for yourself in navigating broadly inaccessible social systems. This does not happen overnight; it’s a deeply personal journey that I am still on.

However, I can point to several important things over the years that I have done out of necessity, but which have in turn increasingly helped me to accept the nature of IBD:

• When going somewhere new, I’ll usually do a bit of research to see what the toilet situation is like – just in case (there are really helpful websites for this, such as the Great British Public Toilet Map and AccessAble).
• Formally disclosing my condition to my university, and using adjustments like coursework extensions when I had symptoms such as fatigue.
• Working from home when my symptoms make my in-person presence in the office difficult. I’d recommend talking to your employer and asking about remote working and their sick leave policy.
• Taking sick leave when I need it. It has taken a long time to accept that it’s sometimes necessary for my recovery. I still struggle with feelings of guilt and inadequacy when I’m off sick. But I’ve recently realised that your health comes first!

Misconceptions about IBD

IBD can be a tricky condition for others to appreciate.

For some people, the nature of IBD puts them off trying to understand. You do not have to explain or justify your condition to anyone.

You may find that those who do try to understand often hold popular misconceptions about IBD. For example, I have lost count of the number of times otherwise well-meaning individuals have, confusing IBD and IBS, suggested changes to my diet to ‘fix’ my colitis (a lot of people with IBD also have IBS, but they are not the same thing).

I believe that only those living with IBD can truly understand what it is like to have the condition. While most people are well-meaning, remember that you don’t owe anyone explanation or clarification, and those that care about you will educate themselves.

What would you say to someone who has just received a diagnosis of IBD?

• It will be okay. With the right treatment, it is possible to live an entirely full life with IBD.
• Your condition does not define you; you are so much more. At the same time, don’t deny it as part of you; acceptance is a key part of living well with IBD.
• Don’t forget about your mental health – if you feel the need to talk to a professional, ask your IBD team if they have a dedicated psychologist, speak to your GP, or self-refer to NHS mental health services.
• Surround yourself with positive people and experiences.
• Go easy on yourself.

What has helped you through the difficult days?

My partner. I am extremely lucky to have a partner who supports and encourages me in everything I do, and advocates for me when things get too much.

I make time for myself – this includes doing things I really enjoy, exercising, and resting when I need to.

Staying hopeful – remembering that there is a way through, and that things will get better.

Where can you go for additional support?

If you experience IBD, remember to reach out to family and friends for support when you need. Alternatively, the following organisations can provide help and resources:

• Crohn’s & Colitis UK – for accessible info, peer support and helpline services
• Your IBD team – for physical and mental health support
• Your GP
• NHS self-referral mental health services
• The Mix’s community – for connection and peer support