Pancolitis - 'I lost a lot of weight and had to stay in bed'

Tony has had ulcerative colitis for more than 15 years. Having tried most medications, he is now on infliximab, which can only be given to certain patients. He is currently in remission, enjoys mountain biking and works full-time for the NHS.

“I was about 28 when I started having bloody diarrhoea and passing mucus from my bowel. I’d lost weight and was bloated and getting stomach cramps. It was very worrying, so I visited my GP.”

“I was referred to hospital and had a colonoscopy, where the lining of your bowel is examined with an endoscope (flexible camera) and a small sample of the lining is taken. The test showed that I had ulcerative colitis.”

“I was put on a medication called mesalazine, which helps reduces inflammation in your bowel. After a few years I went into remission (I no longer had any symptoms).”

“But a while later the symptoms came back as the mesalazine became less effective in controlling them. The doctors tried me on a short course of steroid tablets and a steroid enema to suppress the inflammation.”

“Ulcerative colitis is very unpredictable. Sometimes the symptoms can be mild and disappear quite quickly. It affects each person differently.”

“My condition was at its worst about seven years later, when I had another colonoscopy to see if there were any changes in the bowel lining. Then I went into remission again. I continued taking mesalazine, and I also tried azathioprine, which suppresses your immune system. For the next few years my symptoms came and went.”

“In April 2006, the colitis flared up massively, after building up over several months. I lost a lot of weight, had to stay in bed for a few days, and I was constantly vomiting. I phoned NHS Direct, and was advised to go to hospital.”

“I ended up staying in hospital for three-and-a-half weeks, recovering from the attack. I was given high-dose steroids through an intravenous drip, but after one week I had to stop because they weren’t working. The surgeon came and talked me through the next step – having a colectomy. I was devastated at the thought of having part of my bowel removed.”

“Then they told me there was alternative treatment available. Infliximab is a fairly new and expensive drug that affects the immune response and reduces inflammation. It’s only used to treat people whose symptoms have not improved enough with other treatments, or who can’t be given other treatments for medical reasons. Fortunately, I was a suitable candidate.”

“I am currently taking a course of infliximab and don't need surgery for now. It’s taken my disease into remission and everything’s OK at the moment, although I still get very tired.”

“Although I’ve spent a lot of time off work, my lifestyle isn’t really affected. I work full-time and enjoy mountain biking and going to the gym regularly.”