Thursday was my last trip to the hospital for my Remicade™ infusion. The next will be back in the UK in, hopefully, eight weeks’ time.
The blood test taken on Monday showed that I had quite a lot of inflammation, suggesting that the reason for me not feeling great over the last few weeks was my Crohn’s becoming more active.
As usual, I was assessed by a doctor before my infusion. I was then seen by the consultant in charge of the unit. She decided that I would need a double dose of the Remicade™ and that they wanted to “look inside me”.
My heart sank at those words. In the UK that would mean a colonoscopy or small bowel study and a wait of 4-6 weeks – in other words, just before or after our departure.
Then I remembered that we were in France and things happen quicker, but I was worried I would get an appointment the following week while we had visitors.
I was still mulling over all these possibilities when I was told to put on my shoes as the porter would be taking me down to have my scan in a few minutes.
So, I took the lift to the first floor, an ultrasound scan of my bowel was done, the results phoned up to the unit and my infusion hooked up – all within 60 minutes.
The results showed nothing particularly abnormal, with no serious small bowel strictures requiring surgery. I was simply stunned by the rapidity and thoroughness of the assessment. My mind was put at rest, rather than worrying for 4-6 weeks.
I think I’ve only ever had one ultrasound scan of my bowel done in the UK. In France and the US it is much more common. With good training and an experienced eye, research has shown that it is as accurate as other diagnostic procedures – especially in more serious cases. It’s also quicker, cheaper and less intrusive.
I’ve also never been offered a double dose of Remicade™ in the UK, but this appears to be standard in the US and France when symptoms return and the Crohn’s needs knocking back into shape. The standard dose is 5mg/kg of body weight, so the double dose is 10mg/kg.
In fact, there is an almighty battle at the moment over whether Remicade™ should be available at all as a maintenance treatment for new patients. For me, the drug has had a profound impact on my disease and my ability to get more out of life – this year would probably have been impossible without it.
