As I crouch on the floor, doubled up in pain and clutching my stomach, the realisation that I am in the middle of a country park – far from civilisation and a toilet – hammers away in my head. It is a beautiful day in early summer; the kind that draws everyone out into the glorious sunshine. But here I am, with my son, partner, his friends and their children, desperately wishing that I had stayed at home.
I was diagnosed with ulcerative colitis at the age of 27, when I was eight months pregnant with my son. I began experiencing the symptoms from early on in my pregnancy but my GP had repeatedly waved me away with talk of piles, advising me to "just get on with it". As I grew seriously ill, I spent more and more time at hospital, with the doctors at a loss as to why I was so weak. I didn't bother to mention the "piles", thinking that they couldn't possibly be to blame. It was only when I was well into my third trimester, and an obstetrician asked if there was anything else going on, that I described my symptoms. I was immediately referred to the gastroenterology department and the diagnosis was made. I had never heard of the disease before, and at the time felt only relief that I didn't have cancer as I'd suspected. If I had only known what was to come, I would have been far more distraught.
Ulcerative colitis is a rare inflammatory bowel disease. It affects approximately one in 500 people in the UK but the number of sufferers is steadily increasing. In December last year, Manchester United footballer Darren Fletcher revealed that he was suffering from colitis and had to take an extended break from his career. Since his revelation, there have been numerous articles about the illness. They explain the facts, statistically and medically, but don't really get across a sense of what it's like to live with it.
The disease occurs when a sufferer's immune system attacks the colon, causing it to develop ulcers, which ooze blood and mucous. It is not known what causes it, though there are a number of theories. Some researchers believe that viral or bacterial infections can trigger the disease; others that environment and diet play a part; or it is possibly an auto-immune condition that occurs when a sufferer's immune system malfunctions for no particular reason. There is evidence that links certain genes with a vulnerability to colitis, as 16% of sufferers have a close relative with the condition. However, colitis manifests itself differently in every patient. The fact that it is unpredictable and chronic means it is often referred to as a life-limiting illness.
The symptoms are about as humiliating as they come: crippling pain and diarrhoea full of blood and pus. On the insufferably long car ride back to our friends' house that summer's day, it took all of my energy and concentration to hold back the floodgates. As I raced up the stairs to the bathroom, undoing my jeans as I ran and unable even to close the door behind me, I was certain I wouldn't make it. But I did. Most colitis sufferers have stories about times when they weren't so lucky.
Having colitis means a life full of such mortifying toilet dashes and dependency on strong medication, which is hit and miss until you find out which works for you. (One immune-suppressing medication I took, azathioprine, caused my neutrophils – white blood cells – to diminish so rapidly that a throat infection almost killed me. It also made me vomit for weeks and caused my hair to fall out.) The disease has weakened my bones and my immune system is in tatters. There are regular hospital visits, colonoscopies (just as fun as they sound), infusions and transfusions. Basically, a series of painful, uncomfortable and embarrassing experiences.
But personally, harder than any of the physical and practical discomforts is the loneliness. I am constantly fearful that I will suffer a severe flare-up and be hospitalised or, even worse, soil myself in public. I have to check everything I eat, as certain foods cause the ulcers to start burning in my gut. Every day I think about the part colitis played in the breakdown of my relationship with the father of my child. I wonder how I will ever be able to find someone to share my life with and worry what will happen if I get too sick to take care of my son.
But for all the despair the disease has brought to my life, there are always things to be thankful for, such as the support from family and friends, and my beautiful son, who keeps me getting up in the morning, even when I feel horribly ill. When I am well, I enjoy every minute of my day. I take opportunities and achieve things that I might never have attempted if I hadn't been forced into trying harder at life.
So don't take pity on me. Don't treat me as if I'm different. But if I ask if I can jump in front of you in the queue for the ladies, please step swiftly aside.
