I know you’re all gutted I’ve been so quiet on here.. so here’s another post!
This one is dedicated to my treatment. I get asked by my friends etc what is an ‘infusion’ and what does it do.. so here’s a little post dedicated to answering exactly that.
I’ve had an up and down few weeks where I’m not feeling 100% and generally just exhausted. It scares me because I don’t want another treatment to fail and I’m so so desperate for remission.
My current medication is via intravenous infusion (a drip into a vein in your arm). I’m on Vedolizumab also known as ‘Entyvio’ which is slightly easier to say whenever someone asks 🤣.
Anyway, I’ve been on over 10 tablets a day since I was 17. Throughout the years I’ve tried various other forms of medication on top such as steroids and Humira injections. They deserve their own blog post though for being such bastards 😇
The tablets are meant to ‘control’ symptoms and manage things however since my major flare up in 2015 I haven’t managed to get things fully under control.. so that’s when these other drugs come in.. the big boys, the Bombay bad boys! I’m lucky in a way, each time I go back to my consultant with another failed treatment, there’s a new one to try! The research and development into new medication is amazing. However none of them guaranteed to work, of course as I’ve found out. I dread the conversation ‘we may have to think about surgery’ which I have every single appointment.. it makes me feel sick and I cry each time, just at the suggestion.
I hear/read such amazing stories about people getting their life back and feeling amazing having a stoma bag, but I cannot imagine my life like that. I guess in a way feeling like this has become the norm for me and I’ve forgot what it’s like to feel well.. but occasionally it gets on top of me and I realise I can’t continue to ‘manage’ as I am.
My current tablets are Pentasa (mesalazine) this is a slow release drug which aims to reduce inflammation and relieve the pain and Azathioprine this is used to treat autoimmune diseases where your immune system is attacking your own body, like Crohn's and Colitis. They are immune suppressants therefore my immune system is super weak and I’m prone to infections.. it also means it takes me a longer time to overcome things like a common cold and it usually develops.
My infusion is now done every 8 weeks, it starts as weekly, then 4 weekly and remains at 8 weekly in the hope you’ll enter remission. Entyvio (Vedolizumab) works by stopping the white blood cells from entering the lining of the gut and causing inflammation meaning this should manage the flare and you should then be able to carry on with the tablets to control the symptoms of the condition.
I’m unsure how much longer I’ve got left on this drug before they say it’s no longer working. These drugs are extremely expensive and they do not recommend being on it for long periods of time. To put it into perspective I done a bit of research.. ooh look at me! I found a document published in 2015 which states The NHS list price is £2050 per 300mg of vedolizumab this is the generic infusion dose and what I have each time, And people still complain about the NHS!!
Since 2015 this is the one drug which has dramatically improved my condition however I’m still not quite in remission and I’m still having some worrying symptoms. I have blood tests done a few days before my infusion due date to make sure it’s safe for me to go ahead, I go to the hospital day unit and sit in a lovely arm chair for a few hours. I have my infusion then I have to wait in case I have a reaction to the drug, at this point I’m normally fast asleep. It makes me feel automatically drained and achey; these are the two side effects I feel most along with some nausea.. these symptoms usually last about 24 hours.
The nurses are so lovely and try make the process as smooth as possible. Patients visit for all sorts of treatments and durations of time, I’ve met some inspirational people in that room. I’ve also met some particularly irritating people in that room.. some people bring their relatives like it's a full day out (you get offered a semi defrosted sandwich and a yogurt so basically afternoon tea).
One lady told me Eastenders was too aggressive and I should watch Emmerdale instead, I wish I could have told her to get out of my pub!!
They say nothing in life is guaranteed.. I often hope that ‘they’ are right and one day there will be a cure instead of just remission and learning to manage.
Anyway, that’s all for now. Here’s some photos to really set the scene for you all 😘
