My Flare-up 2015
After Christmas 2014 I started to feel a bit rough but put it down to the bug going round as everybody had it, After 2 weeks I wasn’t feeling any better and had started to lose weight. I contacted my IBD Nurse who agreed it was probably a flare-up and so arranged for some blood tests to check my CRP, B12, Iron level plus a few others, she also arranged an ultrasound. We upped my medication to the maximum dose and arranged an urgent appointment with my consultant. 1 week later and I was was no better, in fact I was worse and now struggling to eat without massive pain, vomiting, diarrhoea with blood and not to mention the insomnia so my IBD nurse arranged a short 6 week course of Prednisolone and calcium this started mid February. I also switched to living on baby food and cuppa soups as I couldn’t handle normal food.
My ultrasound appointment was mid February and the doctor doing it had fun as I’m very ticklish, we used so much jelly lube to help stop the tickling I required a towel to clean it up but we got all the pictures needed to show my entire large colon was inflamed.
My appointment with the consultant was for mid march and by that time I had been on prednisolone for 4 weeks but my symptoms hadn’t got any better and my weight had dropped to 54kg (down from 64.5kg). The consultant upped my prednisolone to 40mg and I started an 8 week reducing dose. Due to my ultrasound results and my previous history we discussed trying a new drug call Infliximab, the consultant filled out the paper work for the funding request and said I should know in the next 6-8 weeks if I’m accepted. After a week on the higher dose of prednisolone I was starting to feel better again and managed to start eating solid foods again, albeit only baked chicken and boiled potatoes.
My funding for Infliximab was approved at the start of April (just 2 weeks after applying) and I had an appointment with my IBD nurse the following week to fill out the paper work and get the screening tests done. Over that weekend my fistula comeback to life, it had been happily closed since 1998 but now its back so just another thing to deal with.
I spent 5 hours at the hospital going over the paper work and all the possible side effects along with getting multiple blood tests and a chest x-ray done. The results come back fine and I was given my first Infliximab appointment at the start/mid may. As I was dropping down the prednisolone my symptoms were coming back and when I got to 15mg they come back with a vengeance. After a chat with my IBD nurse and consultant it was decided I would be admitted to hospital and they could start my Infliximab early, this would also give them a chance to monitor me for a few days. As usual I was given fluids and monitored for 24 hours before being given my first dose of Infliximab.
It was decided my first dose would be a double dose and given over 4 hours and then monitored for another 24 hours, thankfully everything went fine and I was released after 3 days.
I noticed a big improvement in my symptoms after the first dose and the only side effect I had was extreme fatigue for 5 days after the first infusion, I was informed this is normal and will improve with each infusion. My second infusion of Infliximab come round and I had it as a day case patient at the rheumatology department, This time it was the normal single dose over 2 hours then 1 hour of fluids and again everything was fine. This time the extreme fatigue only lasted 3 days so its getting better.
My next infusion is the start of June and that will be the last of my loading doses, it will then go to 8 weekly infusions which will hopefully end this flare-up and put me in remission. I have just finished taking prednisolone (yesterday to be precise) and I’m hoping I won’t need to be put back on them any time soon. I’m also hoping to start reintroducing normal foods back into my diet as 4 months of eating just my safe foods gets boring, I can’t wait for a sausage and bacon sandwich.