MY STORY

Hi, my name is Liam. I have Ulcerative Colitis.

I had never heard the words ulcerative colitis before, let alone have any understanding of what it was or how it would affect me. Little did I know those words were about to change my life forever.

Upon returning from a holiday in Spain, I was rushed into hospital with, what the doctors believed to be, a severe case of viral gastroenteritis. After a week or so I was allowed to leave and spend the rest of my time recovering at home. But things were never quite the same again. 

I began suffering cramps and bleeding regularly which, I was advised by my GP, was concerning the gastroenteritis recovery. I went to see my doctor on various occasions, and I even ended up in A&E a few times too, but I was always sent home with little or no information about what was going on with my body. In fact with every visit, the answer as to what was wrong with me seemed further and further away. 

After a few years of constant pain, bloating and bleeding, not to mention continuously being told there was ‘nothing wrong with me’, I was finally diagnosed with Ulcerative Colitis. Like I said, I had never even heard those words before, let alone understand what the condition was or how it was about to change my life. 

Ulcerative colitis is an autoimmune condition which affects the colon, also known as the large intestine. It causes inflammation and ulceration on the inner lining of the intestine and rectum. It falls under a category of diseases called Inflammatory Bowel Disease (or IBD for short). 

So there I was with my newly diagnosed condition, overwhelmed and confused, and maybe even a little lost too. I slowly began to seclude myself. I struggled to talk about the condition openly. I saw it as a weakness. I suppose it made me feel less ‘manly’ and decreased my value as a person somehow. 

Still to this day I usually just tell people I have ‘problems with my stomach’ and to be honest I am pretty sure quite a few of my friends still think I have ‘IBS’ or ‘bad stomach cramps’. I get embarrassed when I have to explain that I have a serious illness. The usual response from people is a step back and look me up and down kinda thing. That is usually followed by ‘But you don’t look sick’, which is actually one of the most frustrating aspects of having an invisible illness. Most of the time we look ‘ok’ or ‘normal’, whatever normal is.

At the time of diagnosis, I felt so alone. I thought I was the only one in the world going through this suffering. When I looked for information, whether it was from my doctors, the hospital leaflets, or just searching online, everything seemed to be medical-based, or focused on treatments and diets. Nothing ever truly told the emotional or psychological problems that came with having this disease. Nobody ever told me that anxiety and depression were going to be as prominent a symptom in my life as the blood was in my bowel movements. Or that soiling myself in a public place was going to become a completely normal part of life. It is so much more than just physical symptoms, its emotional fatigue, its cognitive struggles, its social awkwardness, its deep states of hopelessness that completely absorb everything meaningful in your life.

I spent some time trialling different medications. I finally got some success with an immunosuppressant drug called azathioprine and my body went into remission. It was one of the most relieving and magical feelings I have ever experienced. After years and years of suffering, I finally had a semi-normal life, or at least a manageable one. 

Unfortunately, after a few years, my symptoms flared up again. I spent weeks in hospital, almost lost my bowel, and had moments where I was unsure whether or not I would definitely come out alive. It was scary. And a hugely significant chapter of my life. 

If you are anything like me, you will probably be wondering ‘why me?”, ‘why can’t I just have a normal life?’. I asked myself that question a lot. And trust me when I was growing up I could never have envisioned my life to be the way it is now. I could never have ever imagined myself being diagnosed with a serious chronic disease. But it was only when I began to suffer from that very disease that I learned the importance of health and the unimportance of everything else my life was filled with. The want for fancy clothes and new trainers, big biceps and a six-pack, new cars and luxury holidays or attention and respect from people who didn’t really matter, was gone forever. I learned to want for basic things like the ability to go to work, a loving family, reliable friends, a roof over my head, clothes on my back regardless of the label and most importantly the ability to wake up every morning and embrace life to the fullest. 

It was during my worst flare-ups I would have these revelations, I would watch people go through life without a care in the world, happily floating along. I would become jealous and would wish I could be in that place. But I slowly began to realise that what was happening to me wasn’t just a painful negative experience. It was an awakening to a world that I had been surrounded by my whole life, but I had never really seen. I discovered suffering in people close to me that I had never acknowledged before. I found respect for people for enduring things that I had never properly considered. I saw great strength in people who suffered in silence and still maintained a normal life. I felt courage from people that were invisible to me before.

So If you are someone who suffers from colitis or Crohn’s or some other chronic condition, then I want you to know whether it’s getting caught short in a public place, the side of the motorway or even just three metres from your own bathroom. Whether it’s getting raised eyebrows and curious looks from all those people around you who just don’t understand. Whether it’s those sleepless nights or restless days sapping your energy. Whether it’s the bloating, cramps and blood keeping you glued to a toilet for days on end. Whether it’s that overwhelming fear that it’s getting worse and developing into something more serious. Whether it’s the cold realisation your social life now revolves around access to a decent bathroom. And most importantly when you are so down and depressed that you feel like you have nothing left… well believe me. You are strong, you are resilient, And you will get through this. There is always light at the end of the tunnel.