Vedolizumab: A Rocky New Start

Have you ever wanted to just get through something, so you can start to feel better?

That’s how I’ve felt about this pending infusion.

I’m not one to rush through something, to just reach the end and say it’s over and done with, I appreciate my struggle and woes as much as I appreciate and celebrate my highs and all those good feelings that come with them. But these past couple of weeks, boy oh boy have I just wanted to fast forward.

My final loading dose of Vedolizumab was due on October 16th, a few days shy of the six weeks anniversary of starting the drug. This time, the protocol for getting to my infusion was different: pre infusion bloods were due from two weeks prior to my appointment, it was being held in a special unit at the hospital where they deliver lots of types of drugs via infusion and it wouldn’t be one of my IBD nurses doing it; it would be an infusion nurse; specially trained in administering mine and lots of other IV specialist medications.

New hospital = new people, new rules and new feelings.

I was anxious. I was scared and abit nervous. I’m back at work; I wanted – with all the will in the world – for this to finally start working. But I had some problems; I’d caught an infection and it resulted in a quite large facial abscess. I’d been put on antibiotics three days prior to my infusion, notified my IBD nurse and was advised to come and have the infusion as planned.  I sat in the waiting room, hoping my abscess wouldn’t hinder my medication. I wanted to know the cause, if this was just an immunity issue or it was because of the drug.

Because I didn’t pass my pre-infusion sepsis checks, my IBD nurse came down to see me. He explained that because Vedolizumab is gut targeted, they didn’t believe this was coming from the drug. It was possible that it just latched on to me because my body is fighting off everything and is run down still. Queue me thinking I should have taken more sick leave and gotten better before returning. But given the abscess, the team decided to let my antibiotics run their course and we’d attempt the infusion again, in ten days time. Meanwhile, ENT would see me to look at draining the abscess. Needles to the face, excellent.

I left feeling disappointed, obviously. But part of me also left feeling let down. Not by my team – all the care I’ve been given has been great so far – but by my body. I’ve been hit with nothing but problems since I came back to Peterborough and starting back at work. A cold. A blockage. This abscess and the subsequent ones that would follow in the days after. It starts to affect my mental health, and the perception I had about myself, now highlighted by how awful I looked. How much more could I handle? Was I handling this very well, was I coping? All the answers.. well, they weren’t positive ones.

Each thing that has come to me has added a weight to my body. IBD can pull me down quite abit of the time but I’ve learnt to cope with it by finding humour in my pain. The same with my ostomy too. But these other things, they have been the heaviest. Because I know they will fade away, maybe? But mostly because they add pressure to an already overwhelmed body and mind. And I could honestly do without them, but I have to get through them. I’ve got to let time run it’s course, let the antibiotics run their course too and in between all of that; have some faith. That I can do, but come on, time, hurry up abit more please!

***

Yesterday I returned to the infusion clinic and was finally given the go ahead for the final loading dose of Vedolizumab. After waiting an extra ten days, the infusion felt like it was taking forever. I felt the drowsiest I’ve ever felt after receiving medication for my IBD before. I hope this is a good sign; being my third attempt at this particular drug I’d begun to think my body was regretting it, rejecting it.

I’m still on antibiotics, I still have my abscess on my face but each day we chalk off another day done. I return to see my consultant in three weeks for a biological treatment review; deciding if this is a good plan going forward and how my scheduling will work, if it is working. Going from having nothing wrong – except the living with a chronic illness and the stoma – four months ago to having what feels like everything thrown at me lately; I knew I would struggle. And learning to cope with everything on your own is hard, especially for the first time. So I decided to be honest about it and hold my hands up and say “I am finding everything hard to deal with” instead of pushing myself through these hard times, knowing that they have to end, must end, will end eventually.

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