Infusion #3 was by far the best of the three.
Regardless of the cold and the coughing, I went off to the hospital, arrived and met my IBD nurse. Knew that the team had talked about my status and would have decided by the time I got into the infusion room if I was receiving it. Knew if I would have to wait out the rest of the Christmas week without my Infliximab. Knew if I would have to continue the antibiotics, continue to work and let the cold run its course. Luckily, despite my awful demeanor on Friday when I had my bloods taken, the weekend off work had proved fruitful, I was allowed to have my Infliximab without any problem.
Of course, the chesty cough I had and the build up of mucus didn’t really make me feel great on Monday, but they got started and took my starting observations. The IBD Inflixmab team had a new member; an endoscopy nurse who was joining my two IBD nurses. It was rather lovely having another familiar face – a side effect of spending at least two trips in the endoscopy a year, means you are very familiar with the staff and are remembered and welcomed in, which is always nice – and it also meant that one could do obs and canullate whilst the other mixed the medication; it was smoothly run operation.
So, canulla in, onto the new pumps (thank you Heart of England NHS Trust for the upgrade) and off I sat for the two hours whilst the infusion went into my system. I don’t really find this part boring. There is always something going on, someone to talk to, a cup of tea being made, toast being given to you, observations being taken. The only draw back is the inability of being able to go to the bathroom. Luckily so far, I’ve not been having a rough time, so I can usually last the two hours until I need to walk (albeit quickly) to the bathroom across the hallway. The next two hours, when I am observed, is what drags on. People start to leave; even the teenagers from the Children’s Hospital in Birmingham who only do a single hour infusion without any post-infusion obs – abit jealous, only one hours in the hospital would be bliss; this is all comes in due time, I am reassured – and the suite starts to wind down in the afternoon. Given the short days in the winter, by the time I’m allowed to leave, it’s always dark; it feels very much like a waste of a whole day, even though its only coming up to 4pm.
I had no reaction, no side effects of the medication, so thus far, it is working brilliantly, as far as I can tell. My bowel systems are only a problem when I’ve had too much of a bad thing or I’m fatigued – which I’ve been learning happened regardless of how far we are in an infusion cycle – and I generally feel so much better about it all; about all the biological side effects, the infusion process and my Crohn’s in general. This has been noted by not only myself, my boyfriend and my family, but work colleagues and friends. Which is always welcomed and appreciated. Of course, I have off days, when I’m not quite on top form – or at least what I can call my own personal “top form” – and I get told about that. As if I was unaware… of course.
I mull over the fact that my body only responds to biological treatment. That the cheaper and less messy medications have failed and I have gotten sicker on them. That this is my option at the moment, and whilst it is working I am trying to not dwell on for how long this will work. I will not be asking or requesting to come off this. I figure that I made that mistake before and I regret it, only way to learn from this, is to not repeat it; to continue through the “small problems” in order to avoid surgery until it is 100% necessary. I hope to go very many months, even years, without that being something I need to deal with. I will remain as positive and happy about what is happening now, and not think about the future – either negatively or with wonder – as it does not help the Present. I will deal with what comes to me when it does. Deal with that is right in front of me when it is there.
The next infusion takes place in eight weeks time, going down to a two hour infusion and one hour of observation. The following week; I visit my new GI for the first time.