So what does it feel like when you’re told you have a disease that’s incurable?
Perhaps surprisingly, the initial feeling was not desperation, but disbelief. Despite being told I had what orthodox opinion deemed to be an incurable disease, it took some time to fully believe it.
In May 2008 I was diagnosed with Crohn’s disease; a chronic auto-immune disease causing inflammation throughout the digestive system. In my case this meant bleeding and ulceration in my gut which led to abdominal pain, diarrhoea, weight-loss and arthritis.
Unfortunately there is much that scientists don’t know about Crohn’s disease. There is thought to be a genetic link, but since the disease is up to 50 times more prevalent in developed countries it seems likely that its causes are at least partially lifestyle related.
At first the disease was presented to me as thoroughly treatable; but one month and a colourful medley of drugs later, it was clear that my case, at least, was not.
My symptoms began deteriorating and soon I was informed that surgery was rapidly becoming the only option which might alleviate my condition. In my case this would have meant removing my entire colon and poking the end of my small intestine through a hole in my abdomen and into an attractive plastic pouch.
I didn’t like the sound of that, and having tried acupuncture, a macrobiotic diet, and being fed nutrients in liquid form through my nose, I was getting desperate.
Fortunately I noticed Nottingham professor of Gastroenterology Chris Hawkey was conducting a pioneering medical trial – using stem cells to treat Crohn’s disease. It is believed that Crohn’s suffers have a malfunctioning immune system which is overreacting to activity in the gut. The treatment suggested by Hawkey is to wipe out the immune system altogether then restart it without any of the abnormalities. Despite, or perhaps because of the Professor’s somewhat maverick approach, I signed up.
The first stage was to persuade my own stem cells, which normally remain within the bone marrow, to come out into the blood. This isn’t easy, but with intelligent use of drugs and natural enzymes the medics coaxed them out and encouraged them to multiply. After that my blood was circulated through a filter and centrifuged to collect the stem cells. The whole apparatus looked worryingly like a top-loading washing machine.
Once my stem cells were safely frozen, the doctors began the process of destroying my immune system. This consisted of extremely high dose chemotherapy and a potent drug called Anti-thymocyte globulin. Once satisfied that my immune system had totally gone, they returned my stem cells to my body to begin the process of rebuilding it from scratch.
I make no bones about the fact that the process was utterly gruelling – anyone who has had chemotherapy can tell you that. It did, however, work. This month, a year has passed since I left the hospital. Hopefully stem-cell transplants will become more widely available in the near future, bringing the chance of a cure closer to those who are currently suffering in silence.
First published in Epigram.