So, this week I’m half way through my four weeks of this second infusion. This also means, I’m more than half way to my next infusion too. In fact, its 9 days away and honestly. I’m excited.
The difference between now and before Inflixmab is huge. And add to this how different I feel between first and second infusion, and now, awaiting the third, it’s quite amazing how this is really helping.
Now, as you already know, I am not biological naive, meaning I have received biological treatment for my Crohn’s in the past. That was between December 2011- and January 2013. This also means that my Crohn’s is categorised as being “moderate to severe” – something that some might find offensive; all of our collective individual experiences with IBD aren’t exactly pleasant and do they really need to be categorised, but yes, I believe they do – so despite the fact I was taken off Humira at the start of this year, I am still categorised the same. Despite all the medications I tried this year too, I am still “moderate to severe” Crohn’s Disease of the terminal ileum.
Being on biological treatment here in the UK means that you have failed or been unsuccessful with all other levels of medications – these being steroids, 5 ASAs, 6mps and immunosuppressants – before biological are considered. For some, now, they are being diagnosed and treated with biologicals from early days and been weaned off them to stabilise them; sometimes this is quicker and means less hospitalizations and fewer medications complications, but all we all know, IBD is inherently individual and this is all dependent on GIs and NHS Trusts. So, I went through alot of meds before I was allowed Infliximab. And I was given extensive time with my IBD and GI when it came to this. This is different to how it was before Humira; I was struggling at that point to avoid the hospital and I was unable to stabilise on anything given to me, not to mention the side effects. Humira was pitched to me in my darkest days and given the pain and frustration I was feeling, I agreed. Humira changed my Crohn’s into something I could manage without the hospital admissions and I could go back to my life and start to actually deal with my lifelong battle with IBD. Now, almost two years later, back on another biological, I am wiser and more confident about how to manage my condition.
That being said, I am careful. But I am also very realistic about my chances of this working. Luckily, it is. It is taking time, time of which I was very impatient with before starting this; and probably still am in the couple of days leading up to my infusion after my required blood tests, but I am much better at understanding that this is a strong medication that lingers in my system. Managing my pain and controlling my BMs is down to me and my diet. The Infliximab only works if I work along with it, to maximise its coverage and its effectiveness. Hopefully, I am doing a good enough job of this.
Whilst also avoiding all the bugs and sickness about, I also keep track of what I do, eat and feel. The pain has considerably reduced in this last infusion; I feel less cramping and stabbing pains in my abdomen and I’ve only got sharps aches in my knees nowadays. I’ve also been able to incorporate some more fruit juice and veg into my diet without too much problem, but found that certain foods definitely upset me, more so than without any medication. What I have noticed of late is how particularly warm I have become, almost like a radiator. I do wonder if I have picked up something; I’ve had a slight tickle of a cough and a start of a sore throat, but I don’t want to let it get out of control, so I take something straight away. Hopefully this has stopped anything getting too much of a hold on my compromised immune system.
My only really struggle is to keep my legs and feet going whilst I’m on a long shift at work. This means taking Tramadol at work, which has been fun and scary. I’ve been considering reducing this to Co-codamol once I’ve gotten into my next cycle and its gone past the festive period.
All in all, I’m finding Infliximab a positive experience. Of course, I am not so naive to realise that this might not last and there are cases of people have serious problems and side effects from them, but I wish to avoid a surgical intervention for as long as I am able to. I take all the negative press surrounding this drug with a pinch of salt and realise that sometimes, things happen and we have no control over them, and for the times when I can control it, I will. I know my paths for when I experience problems and that there is always help out there. That helps ease my mind quite abit, releases the pent-up anxiety and the stress with getting sick again.
This being said, I am feeling rather good and healthy, giving some light into why I am so positive. I’m sure that if I wasn’t well, I would be reporting this in a different light. But isn’t this all about raising awareness, and all of it helps towards the main goal…?