A bag of nerves

So, tomorrow is my first Inflixmab infusion.

This is my second and final attempt at a biological treatment for my Crohn’s Disease.

Last December the decision was made, after much discussion and scoping, that I was to stop Humira. I was feeling a mixture of relief and freedom. No more fortnightly injections, no more struggling to get through a 14 day cycle, no more crappy immune system, I could finally start a Crohnie life without medication. For both my medical team and myself, it was a little test to see how well my body and disease could go without medical intervention; either from a new treatment plan or hospitalisation.

Since the start of 2013, I have to admit I have struggled to keep myself medication and health problem free. I have said many many times, to myself, my friends and my family, if it is not my Crohn’s it is something else. And these last 10 months have defiantly proved that. (Amazing to think that only recently, I was counting it as 9 months of hell, it’s now spilled over into 10 months, boy it’s really flying by now..!) I first suffered a flare up about 7 weeks into being medication free – I should note here that my scope last Christmas confirmed my Crohn’s was in remission and I would be able to keep going without needing to take Crohn’s medication – and I was devastated. My grand plan of going at least a couple of months without needing to see my GI or contact the IBD nurse with a problem was very short-lived. I was put on steroids and given Azathioprine’s sister, pure form drug; Mercaptopurine (6-MP)

I despise that drug for what it did to me. I was left bed ridden and in agony for days after having taking only three days worth of the treatment. My body could not tolerate its mechanisms inside my system and just made my body attack myself even more. So, no 6-MP for me. I went for a MRI scan to see what was happening inside and then put on Mesalazine (5-ASA). This drug worked for 6 weeks, give or take, but eventually, once the steroids were completely gone, I was back to the same pain and the same frequency of BMS throughout the day. I was yet to experience the agony of being up all night once again with this bastard disease. No, it would save that for the end of the Summer.

So, it’s the middle of summer and I’m still suffering but not to the same extreme as I once was. Most days I believed that the Mesalazine was working and doing it’s job, but this medication regime left me house ridden outside of working. I was extremely careful of  what I ate because I knew that if I went crazy with the food, my body would not be able to cope and Mesalazine would be nul and void. It was only a matter of time. And at this point, I was no way near when I am right now. Sometimes, I wonder how much of this pain and routine I got used to, to the extend that it just because second nature and part of my life. That in some ways, I became numb to the pain. I know, I know, that is just silly, I know how much my body was hurting, and it wasn’t just localised to my gut.

Fast forward to September when I have a double scope;  given to me after the most awful remainder of the summer with abdominal pain, nausea, heartburn and serious joint pains, knowing the outcome will be confirmation of what I suspected in August when I was taken to A&E with breathing problems because of restarting the 6mp route again. I was weak at the time, in my mind and body, and just wanted to get sick enough for them to reconsider biological treatment. Ironically, I was sick enough, am sick enough for Infliximab, I had become numb to the pain, used to it, but my procedures did not lie. I was accepted on the funding scheme weeks later, booked in for November 12th and here it is, less that 12 hrs away from beginning.

I am thankful for the NHS. I could not afford Infliximab without our National Health Service. I accept that I had to go through hoops in order to be funded and I had to be sick enough to warrant it. I knew that from the start of my 2013. I knew that I had to get much much worse in order to receive treatment. Seems utterly perplexing but, that is how it goes.I also know that Infliximab is my only option at present. I have failed all other conventional methods of treating my Crohn’s and things are only made more complicated by my narrowed large bowel and “cause for concern” narrowed join between colons.

Infliximab scares me. It makes me nervous. I am of course, aware of how much this medication will help me. I know that my past history of being on biological treatment is excellent and the same results are expected this time around. I know that this is what I must do, must face, in order to get well again, to become the person I was in 2012 once more. It is a step towards me taking back ownership of this bastard disease and being in control once more. But it does come with its risk. The amount of pre-screening for this was immense. The checks I must go through before receive an infusion, the care I am given whilst it is being administered and the care I must give myself between infusions is also of great important and significance. They do not take this treatment lightly, not only because of its cost and its side effects, but its implications for the future, too.

I know for one, that my narrowing could relax under these infusion or it could become more problematic, it all depends on how my body reacts. This, of course, scares me. It terrifies me, because I know how painful my narrowing is now, and it is “stable” for the moment, but the uncertainly it brings into my mind, without me consciously being aware of it, is a constant worry. This would mean surgery. Scary, big, grown up, big problem, Crohn’s disease reality.

But, I have an amazing nurse who is as hard as nails and tells me, reminds me always in fact, it is the positivity I need in my life and not the negativity. It is all about being, or pretending to be, happy and confident with this treatment. We don’t need any bad juju tomorrow, or at any infusion date, and I need to remain focused and positive that this will work for me, just like Humira did. And if it does, I will be so happy, I won’t be able to stop smiling, once I get through the “usual” drowsy first day side effects.

Here is some information on what Infliximab does, how it works, why it works and how it is being used to treat Inflammatory Bowel Disease, along with a whole bunch of other autoimmune conditions too.

NHS Choices

NICE Guidelines