I sent this off to The Guardian a couple of days ago and thought I’d post it here. I had another infusion of infliximab a few days ago, but have been left wondering if “that day” has come sooner than I’d anticipated…
I live with a chronic condition. It is called Crohn’s disease, a disease which affects the bowel and can affect other parts of the digestive system. It is an autoimmune disease, but we don’t know what causes it yet. It is lifelong and incurable. It is only treatable. Its symptoms include diarrhoea, fatigue and abdominal pains.
I’m one of the lucky ones in that I am on a treatment that is working and has put the Crohn’s in remission, called infliximab. Infliximab is a drug that binds to a chemical messenger called tumour necrosis factor alpha (TNFα). There are only a few of other drugs that do this. Luckily, I am now starting to live a relatively normal life. I am a teenage boy doing normal teenage things – going out with friends, playing video games and eating a lot of food (something I couldn’t do when the Crohn’s wasn’t in remission!) But, in the past couple of years, I have had to do a lot of growing up, simply to try and cope with such a diagnosis.
Future treatments and potential cures are in development. I hope that within my lifetime that a cure will be found, however unlikely this is. I hope that many more treatments are developed to put people in remission for a long time, to prevent them suffering.
However, there will come a day when infliximab stops working. I wake up every morning hoping that today will not be that day. There will come a day where the next treatment stops working and any other treatments stop working and, my god, I do not want those days to come soon. I am young and yet I face a life of dangerous drugs, clinical trials and surgery to remove parts of my bowel ahead of me. And I wish I didn’t have to suffer with it.