Period: 2015
For anyone reading this feeling close to despair having tried everything to relieve their Crohn's symptoms, hope is out there! Nearly three years have passed since I started Infliximab and my life has returned to a level of normal I would not have believed possible in those dark moments when I began to doubt that I would ever be free of those debilitating symptoms. It is not a miracle, I know from experience that I must also do my part and take care of my body as much as possible, but it has afforded me over two years of remission and allowed me to get my life back. After seeing every other treatment fail, I will confess I had reached a point where I began to doubt anything would stop the symptoms long enough to provide any meaningful form of relief.
In October 2015, having been healthy and able to work full time for a while I decided to take a trip to Australia. Having been forced to abandon my dream of spending a year backpacking the entire country I decided on a whistle stop 1-month trip to celebrate the fact that I had my life back and, most importantly, to get it out of my system. Sadly, I had such an amazing time jumping out of a plane, snorkeling the great barrier reef and wandering through both desert and rainforest, that I remembered why I loved travelling so much in the first place. And why I'd been so depressed upon discovering that I would have to visit the hospital every 6-8 weeks for Infliximab instead of going backpacking again. When I returned from my month in Australia, I decided that I would go back and do the full year like I had originally planned.
A further colonoscopy last year (thankfully done under general anaesthetic, at least there was no anaphylactic shock this time!) failed to access my small intestine, just as it had on all previous occasions. Therefore a couple of months ago I underwent an MRE. The purpose of these tests is to ensure the bowel is inflammatory free and therefore clear the way to cease treatment of Infliximab. The NICE guidelines (UK only) state that "infliximab should be given as a planned course of treatment until
treatment failure (including the need for surgery) or for 12 months,
whichever is shorter." As I've been receiving biological therapy for almost three years now, the time has come to see if I can maintain remission without it.
I have only spoken with a couple of other people who had stopped receiving Infliximab, and both had been forced to start it again with 12-months, so I knew there was a risk my symptoms would return. With that in mind I decided to embark on the dream I had been forced to leave behind earlier in the blog
of further travelling. As Infliximab has required me to visit the
hospital every six to eight weeks for the last three years I had been
forced to put that particular ambition to the back of my mind. I realised I had to take this opportunity now, whilst I had my health. The flight is booked for April 11th, eight weeks time.
This week, I received a call informing me that my MRI scan showed active Crohn's Disease. This shouldn't have come as a surprise to me, as I have always had occasional mild symptoms even while receiving Infliximab, but to hear those words from the nurse was a massive blow. The past 12-months had been fantastic, I was healthy, happy, had a good job and good friends and I was planning on an amazing trip to Australia, with no idea when I'd be coming home. In one sentence from the Nurse my mind went back to those dark days when my life was ruled by the symptoms of Crohn's. My dream adventure suddenly seemed less certain.
As useful as Infliximab is, one of the downsides as with many drugs is that the body gets used to it, and over time it becomes less effective. Even if I were not planning on moving to the other side of the world for a while continuing Infliximb treatment no longer seems like the miracle solution it once did. Thankfully there is an alternative called Humira (adalimumab), which patients inject themselves with. My nurse tells me she has another patient who went backpacking to Australia and uses Humira. I will find out more about the drug when I visit the hospital in the coming week or two, but I do know that most patients receive three months worth of supplies at a time and typically inject themselves every 2-weeks. Easy enough, I can handle that. Further investigation has revealed that it must be kept stored at 2-8 degrees Celsius (26-46F). Since I plan to live and tour in a van for the first few months of my trip, this is not an ideal solution.
