Story
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After just a few months' illness Steve was diagnosed with the horror of Crohn's disease in April 2014. Despite initial treatment with steroids, another tablet called Pentasa and then an immunosuppressant drug called Azathioprine, he quickly deteriorated and was hospitalised in early June 2014. Just two weeks later he had to have his entire large bowel removed - a life changing experience in itself. Unfortunately the story did not end there. He spent a further four weeks in hospital during which time he suffered septic shock and ended up in ICU. Furthermore during a second operation it was discovered that Crohn's disease was still present in his small bowel...
Back home in July/August, Steve began more intensive treatments to try to put his Crohn's into remission. He restarted the Azathioprine, but suffered a severe reaction giving him another week in hospital. So he was switched to '6MP', a similar immunosuppressant drug, plus Infliximab infusions. Now, six months later, he still takes steroids, 6MP, Immodium plus lots of other tablets - it varies, but has been as many as 40 tablets per day, currently over 20.
Crohn's is a truly devastating disease. Not officially 'terminal' but offering plenty of scope for fatal complications, infections and severe debilitation. Steve himself lost about 4 stone in weight in the space of 6 months, and is currently struggling to regain the lost weight because of malabsorption. He suffers from severe fatigue, excruciating pain, nausea, and because of these things, depression. He has to endure a boring, bland diet, no alcohol, no spicy food, not even his favourite Coca-Cola! On the rare occasions that we go down to our local pub, he has a glass of water. He feels that his life is on hold, and there's no end to his suffering in sight. We rarely eat out, cannot plan a holiday or even an evening out. Many Crohn's patients are unable to work because of their symptoms.
The usual treatment of Crohn's disease involves the use of steroids, immunosuppressant drugs, and biological treatments. These drugs all carry their own risks and potentially lethal side-effects including pancreatitis, liver failure, skin cancer and lymphoma. What's more, they don't always bring about the remission that the patient is hoping for. For many the situation seems hopeless.
However now there is hope! Ongoing research has shown that Crohn's disease may have a different cause after all, that it may actually be caused by a bacteria called Micobaterium Avium subspecies Paratuberculosis, or MAP for short. What's more, a vaccine has been developed by Professor John Hermon-Taylor of King's College, London, who is currently working towards human trials of a new blood test for the presence of MAP, as well as the vaccine itself. This is a really exciting development offering hope at last for many thousands of patients world-wide.
Steve was 50 years old when he was diagnosed - relatively old in Crohn's terms. He spent his 51st birthday in hospital, in agony, not knowing what lay ahead. Many patients are diagnosed as children - from babies through to teenagers. They even make teddies with a little stoma on their tummy to help explain to children what will be happening to them when they have to have their bowel removed. Heartbreaking. We cannot possibly imagine how a child copes with going through what Steve has had to endure over this past year. For older children and teenagers Crohn's also adversely affects their schooling, college and university plans.
Steve's disease struck out of the blue eighteen months ago. It has been such a frightening roller-coaster ride that no-one should have to suffer. If it happened to him it can happen to anyone, and if this research is successful in bringing about a simple vaccine to cure Crohn's it will be the best thing to happen to Crohn's patients of the present and in the future. We hope you will consider making a donation to bring this research to its conclusion as quickly as possible. It's what we're all desperately waiting for and some patients have been waiting for many, many years. In fact, many have lost their lives waiting.
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