Last time I wrote anything on my blog I had just visited my Gastroenterologist and he had prescribed me Prednisolone for the short term. At the time I didn’t really have any idea what was going on. As readers will already know, doctors sometimes are a bit vague and until you start asking the right direct questions, you will be kept in the dark. That was my experience. So I took it upon myself to write down exactly what I wanted to say. When I’m driving to the hospital I’ll go over the questions in my head but I know that when they call my name I will forget them all. I now have a brand new note book, (thanks Santa, aka Mum) which is full of little scribbles. I also jot down any symptoms I’m having and a general bowel movement note, because… why not!
What I found out from that meeting, was that I would need to have a MRI scan and a Colonoscopy. The results returned and from the scan and they could see no blockages, but they could see that 10cm of bowel was diseased. I managed to get out of that Colonoscopy as well, win! I was told that after having an ileostomy reversal you are about 90% more likely to have reoccurring disease in that area, so it wasn’t a surprise for the doctors, but it was for me. Since my reversal I had been in a constant flare up, I had just coped well until October and those two weeks had knocked me flat. This definitely wasn’t the news I was hoping for.
After taking the steroids for 12 weeks I had an appointment with my Specialist Nurse, who I have a good relationship with. I laid it all down to her that I felt I had no idea what was going on. I wanted to know what my future was and what medication was next, because I definitely knew I wasn’t staying on steroids forever. She explained it as rungs on a ladder; first, they tried Pantesa, next Mercaptapurine, then Steroids. My next choice of poison was going to be either Infliximab (Remsima) or Humira. I have heard of these from the many IBD accounts on Instagram I follow. I was told to read the leaflets and stick to reputable websites when researching, for the obvious reasons. I chose Infliximab in the end. The idea of going to the hospital every 8 weeks is fine with me, but I know injecting yourself can get very tedious after a while.
I have now had my second infusion and from the morning I woke up after it, I have felt better, still slightly fatigued, but I can’t believe the change. Over Christmas where most gain a few pounds, I managed to lose 8. My rings didn’t fit my fingers anymore and my jeans were hanging off. I was definitely shocked the day they weighed me for my first infusion. After the second one I had gained 2lb! I know what you’re thinking, ‘I shit 2lb’ but to me this was amazing progress. The struggle is real!
The only side effects I have noticed from the Infliximab, is especially the day after I have it, is a dull headache. I NEVER get headaches but these generally go with Paracetamol. Steroids always give me a rash on my face, so that has now made a sneaky return. Over all though, this treatment is a bit of a god send for me right now. So I’m very excited to get my life back and enjoy this remission, however long it lasts.