What's Ulcerative Colitis?
Ulcerative colitis (UC) is a disease where the immune system over-reacts in the large intestine, causing ulcers and swelling in the bowel. It's a form of Inflammatory Bowel Disease, a group that also includes Crohn's disease, which is a similar condition affecting the small intestine.

Ulcerative Colitis is serious and long-term. Symptoms include diarrhoea, possibly with bleeding and mucus, urgency going to the bathroom, compromised digestion and abdominal pain. These can lead to malnutrition, anaemia and fatigue as well as more serious complications. There can also be an impact on a person's mental health.

While there is no cure for UC, a range of treatments are available which help manage and curb the inflammation in different ways. Surgery is also used in some cases. What kind of treatment patients receive is dependent on their specific conditions and severity of symptoms.
Where can I find more information?
You should first talk to your GP if you suspect you have symptoms of Inflammatory Bowel Disease. They will decide whether you need to be referred to a specialist.

In addition there are a number of valuable sources of information online. We've linked to some different websites at the end of this page that you might find useful.
Can I talk to someone here about UC?
Yes, we have people in our community who are living with Ulcerative Colitis and Crohn's disease. You can sign up to be invited to our matching rounds where we connect people for conversations. If you decide to join the round, we will try to match you with someone to chat to about UC.

What happened in the lead-up to your diagnosis?

I remember I was at my girlfriend's house at the time, and – graphic descriptions ahead – I had to go for a poo at what for me was a weird time of the day, like 5pm or something. I then noticed it was an odd colour, sort of orange, but didn't think much about it. Then basically over the next few weeks I was having to go more and more often each day, and started seeing noticeable amounts of blood each time I did. It was a bit off and on though, some days I'd be more or less fine. My GP figured I had a virus and unfortunately it took a while to get referred to hospital and correctly diagnosed.

By that time I was really struggling – the way I tend to describe it when people ask, is to think of the worst stomach bug you've ever had but then extend its duration to several weeks, maybe even months.

What did you want to know when you found out you had this illness?

I didn't really know what to think nor to ask – I was probably too overwhelmed to come up with any considered questions, so at 19 all I wondered was, what's the fast-track back to health? I guess I was hoping to be told it was going to go away with treatment – which, somewhat devastatingly, it wasn't.

Photo of Alex aged 19 standing in the sun on Brighton Seafront

What were you feeling at the time?

Disbelief mainly (the classic "this only happens to other people" mindset), optimistic it might go away despite being told it wouldn't, and scared of having to wear a colostomy bag [A device that fixes to the outside of the stomach. Poop then drains into it directly from the small intestine, bypassing the large intestine]. Although later I would come to terms with the idea and indeed a bag ended up saving me – I hated the prospect at the time and it seemed extremely unfair that this was likely my future.

"The toughest part was feeling like I had to manage the effect of my illness on other people."

You're 23 years into your journey and have since had your large intestine removed. What's been the toughest part of surviving this illness?

The funny thing is it wasn't the bowel removal, which horrified me when I first heard about it. The decision, although massive, was quite easy in the end, I'd been trying to fight on and live as normally as possible, but I was getting soundly beaten and my life was nowhere near what it should have been at that time. I just wanted it back and I felt like this operation would give me that. Which it more or less did. I think sometimes letting go can be the best thing – at least in this case I believe it was.

However, with the benefit of all this hindsight, I'd say the toughest part was feeling like I had to manage the effect on other people. I had a supportive family and partner at the time, but I still felt extremely isolated and alone, and that it was important no-one else had to suffer the effects of my illness. Which seems ridiculous in retrospect.

What would you pass on to other people going through this?

One of the most valuable things I've learned is that you can't “fight” an illness like Inflammatory Bowel Disease. Your body can fight a virus, which is a foreign invader, but the way I look at my IBD is that it's my body itself that has a problem. It's upset and it needs something to change in order to recover. You definitely need resilience, but I've tried to let go of the idea of "fighting" my IBD, because that feels like fighting my own body.

Once I accepted this, it changed my whole approach to managing this condition. The really hard part is knowing what needs to change, but the research and conversations around IBD are beginning to point to certain things that might be factors. I know people who have brought their IBD into remission, mainly through their own research and trial and error. They've made changes in their lifestyles, diets, therapeutic treatments and so on, usually in combination. That's really inspiring.

Another thing is that I was offered counselling by the NHS when I had my first operation, and I turned it down because I felt like I was ok. I wouldn't realise until much later that I was not ok mentally speaking. I was in survival mode and very disassociated, and that had a massive effect on my choices for years after in relationships, my career, social events and so on. I'd say to others that it's well worth stopping to ask yourself if you really are ok, or if you're just surviving.

Photo of Alex dressed for cycling and standing with a mountain bike in the French Alps

What role has peer support played in your story?

Of course as founder of a peer support community I'm biased, but for me it's been transformative. I'm not very motivated to learn through reading, so it's through conversations with others that I've learned the most. A great example – Seb Tucknott of IBD Relief is a good friend of mine and has an extraordinary amount of knowledge on the subject. We've talked for hours about different things we've each tried and I've met other people through him who I've drawn ideas from as well. I look at my illness in a completely different way because of all these people, and I feel a lot more positive about my future with it.

For me it was a long time before I met anyone else who had my condition, but when I did it was at once educational and hugely reassuring. Not everyone has access to others that share their experience, and that's what we're changing with Someone Who Knows.

Alex is a member of Someone Who Knows and regularly joins matching rounds to talk about IBD, the J Pouch, surgery, gut health and the benefits of therapy.

"For me it was a long time before I met anyone else who had my condition, but when I did it was at once educational and hugely reassuring."

Looking for more information about Ulcerative Colitis, the Ileostomy and the J Pouch?

IBD Relief (UK)

IBD Relief helps people live better with inflammatory bowel disease through education, patient advocacy and research, and sharing the stories of people affected by IBD.


Crohn's and Colitis UK

Crohn's and Colitis UK helps people with IBD to  understand their condition so that they can make informed decisions about their health. There is a telephone helpline available too.


Crohn's & Colitis Foundation (USA)

The Crohn's & Colitis Foundation is dedicated to finding new treatments for Crohn's disease and ulcerative colitis, and improving the quality of life of children and adults affected by these diseases. Information available in English and Spanish.


Chrohn & Colitis NL

Crohn & Colitis NL advocates for people with IBD in the Netherlands, helping them to find information and connect with others and advising medical professionals on their behalf. Information available in Dutch.


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