My diagnosis came in January 2016, and since then I have been put on several different drugs to try to control my Crohn’s. All of which didn’t work, until November 2016. By this point, I had been given around 5 courses of steroid treatments and then a drug called Azathioprine. I had been taking Aza for 2 weeks until my pancreas decided to disagree and make me feel like it was trying to escape out of the front of my body. Back to square one.
I was put on an IV form of immunotherapy called Infliximab. Initially I had an infusion every 2 weeks until it gradually increased to one every 8 weeks. I’ve been on this treatment now for 18 months. This drug is used to treat severe IBD, it works by targeting a specific protein in the body called TNF-alpha. This protein is naturally produced in the body as part of the bodies immune system to help fight infections by causing inflammation in affected areas. TNF-alpha is thought to be ‘over produced’ in those suffering with IBD, so the infliximab binds to this, therefore reducing inflammation and swelling. Ta-dah! You’ve been educated!
With most immunotherapy, it depletes the immune system. So while I have been on this drug, every cough, cold, infection etc that has gone around, I have caught. Now someone who is immunocompromised isn’t able to fight it as well as someone who has a fully functioning immune system. A simple cold has had me in bed unable to move, and a chest infection has left me unable to do anything for a week. About 6 weeks ago, I went down with tonsillitis, which was great! As someone who talks to people for a living, it was far from ideal. 2 courses of antibiotics later, it had finally shifted. Ofcourse, a chest infection followed, which I have now had for 4 weeks and 3 courses of antibiotics. Being immunosupressed is not fun!
So, I’ve been on this for 18 months now. I saw my consultant yesterday who reviewed all my recent bloods, tests and scans etc. The infliximab is no longer working, as I have no ‘active inflammation’, there is no point in me having it anymore. All it is doing is depleting my immune system, causing me to be constantly ill and making me feel useless!
Before I had gone into see my consultant, I had decided I wanted to stop my biological therapy treatment, just for the simple fact I was always ill! Luckily, my consultant agreed! It seems like what is remaining in my small bowel is scar tissue, which infliximab can’t help. I had an infusion booked for today, which reluctantly I agreed to carry through. So at 6pm today, I received my last infusion. To say I felt emotional may be a bit over dramatic, but I definitely felt like a chapter had closed in my IBD journey.
I am now immunotherapy free for the next 6 months! No more infusions, no more depleted immune system. Back to feeling some form of ‘normal’ again!
Although my consultant won’t see me again for 6 months, he has told me should I flare up, then either I can go back on the biological therapy, or opt for surgery. Now for some it may seem drastic, but I don’t want any more drugs pumped into me. I would opt for the surgery in a heartbeat! That is all if I flare up, which I’m hoping doesn’t happen!
Heres to the next 6 months. Heres to feeling better, and here’s to hoping my Crohn’s keeps it gob shut.