We’re officially two weeks into 2018 – have you managed to stick to your New Years’ resolution?
At the beginning of the year, I wrote that my resolution was to stay optimistic, positive and strong despite my ulcerative colitis. When I wrote that, I was already struggling with my emotions regarding another year of illness and pain where medication didn’t seem to be helping. Although my symptoms were nowhere near as bad as they were in March/April/May or September (which were definitely the worst months of 2017 for me, health-wise), I felt that I’d hit an emotional low. Everyone around me was ready for a new start (‘New Year, new me‘ and the like), and I was desperately hoping that I’d be miraculously well just because the number on the end of the year had changed – I put far too much pressure on this.
However, I’ve had a great weekend. Yesterday, I walked 8.5 miles, went shopping, went to the cinema and I ate out at night (11pm!). Although I’m super tired today, I’m happy that my quality of life seems to be improving again.
I’m not sure what’s caused this improvement or how long it will last, but I believe it may have something to do with the new treatment I started on Thursday: Infliximab biological infusions. A combination of this new drug, steroids and an improved attitude seem to be paving the way for a happier me – even though I still have a huge moon head (and really bad skin all of a sudden; what’s that about?).
I thought I’d share my first experience of this drug as I would have liked to have known more about what to expect before my first appointment. I left work at lunch time as I had decided to take half a day’s holiday for it – too ill to use it for a regular holiday anyway, so I might as well get paid to go to the hospital! Sam picked me up and we went for lunch before heading to the hospital. Once we’d parked up at the hospital, we made our way up to P1 ward, which was the second to top floor! The view was incredible.
I’d not received a letter from the hospital, but I know my hospital number by heart at this point so I was prepared to tell reception who I was and why I was there. Laura, the nurse in charge, set me up with a fantastic view of the city (see above). She took my blood pressure, temperature etc. and then attempted to find a vein. I have terrible veins. They’re always a nightmare when it comes to taking blood. But, she managed to find a pretty decent one in my wrist for the cannula. First, she took two pots of blood, then flushed the cannula with saline solution (brrr, cold). I was then given IV steroids through it, before being hooked up to the Infliximab drip.
Laura told me she would start the rate of the infusion off slowly to begin with to see how I reacted to the Infliximab. I was to tell her if I began to feel nauseous or if I got a headache. Luckily, I had no adverse reaction to this and soon enough the infusion was at full speed. Because of this ‘trial’ period at the beginning, the whole infusion took just over two hours. My blood pressure, temperature, heart rate and such were monitored throughout.
A nurse once told me that if you drink a lot of water before having a blood test, your veins are easier to find. I’d gone a bit overboard on this advice and, about 20 minutes into the infusion, I really needed to use the toilet! This was not an issue at all, as I could transport roll the infusion around with me to the toilets on the ward. However, I would recommend wearing something that’s easy to remove/put back on again with one hand as the cannula had rendered one of my hands pretty much useless. I was wearing tights. Whoops. Next time, I think I’ll take leggings to change into beforehand.
The day after my infusion, I felt rubbish. This may have been a coincidence, but I had a really rough time of it. I didn’t sleep well (probably because of all the steroids), and whenever I have a bad night’s sleep, my symptoms are exaggerated. How I managed the commute to work, I don’t know! I had bad stomach ache, frequency, urgency, painful movements, headache and fatigue – a killer combo. Still, the show must go on.
However, when I woke up yesterday morning, I was so surprised that I wasn’t in pain. I had absolutely no movements yesterday, which I initially found concerning, but I definitely took advantage of this by making the most of the day. Today has been very similar, with very little pain, although I have been very tired (due to my adventures yesterday and the late night). I’m hoping that this improvement in my symptoms is because of the Infliximab and that I will continue to get better. My next appointment is at the end of the month, but I will be seeing my consultant in clinic for a catch up this coming week.
Fingers crossed, this is the drug for me!