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.

Vedolizumab: Here We Go Again – Third Times a Charm

Today has been bittersweet. I feel like I’ve said that a lot, but the excitement of actually getting back into this whole ‘back on biological medication’ routine has taken over the fact that this was my last outpatient appointment at my hospital. If you’ve been following me for a while, you’ll know that I relocated at the start of the summer for a new job – read more here and here – and with that came moving my IBD care to a new hospital. It was a big challenge as I was, at the time, not receiving any treatment and […]

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Going Medication free..? Is this *the* IBD dream?

I received correspondence from my GI yesterday, following my clinic appointment with him last Tuesday. It made for an interesting read: “I am sorry you came to separate surgeries, initially an extended right hemicolectomy and then a subtotal colectomy. We have still got you on Vedolizumab and I am not a hundred percent sure this is the right choice for you at present. In theory you have been completely down staged surgically and so it maybe possible to trial you without treatment. Presently, under NICE, Vedolizumab was the last option I can provide without looking into trials. I note you have […]

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Vedolizumab: The Final Loading Dose 07.11.16

Four weeks have passed. My blood work was done the day of stoma clinic last week so I was on schedule to receive my final loading dose of Vedolizumab then on to a regular schedule of having it. As I said in my last post about Vedo, we still didn’t know if this was working yet or if it was going to work. We just had to complete the loading doses – week 0, week 2 and week 6 – before moving onto the usual eight weekly infusion schedule. I haven’t thought or planned past receiving that fourth dose in […]

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Vedolizumab: The Restart

Following my subtotal colectomy in August; my IBD team recommended returning to Vedolizumab. I had already tried Vedolizumab; receiving the three loading infusions last winter. This is where I was and how I was feeling as 2015 turned into 2016: “… So, it hasn’t gotten any worse, but the past year’s drug choices haven’t made it any better. I’m on a plato; and its going down, albeit slowly, over time. For me, the past 10 months haven’t been brilliant. They haven’t been the worse either, but I’ve noticed a definitely decrease in how well I feel in general, an increase […]

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To new beginnings…

Tuesday 23rd August (cont’d) “I’ve got a space for you on the end of the emergency list today, could be this afternoon, probably this evening though.” Ward round this morning and surgeon is keen to remove my colon today. Despite being busy, he will stay and do my surgery when his list is complete. Turned out that meant waiting all day – still experiencing more blood than I’ve ever known to come out of me – until the anaesthetist came to see me at 6pm. We talked through my procedure – a subtotal colectomy with ileostomy – and my options […]

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In for the long haul

Thursday, August 11th “I feel absolutely awful. If I’m honest, I’ve felt awful for weeks and I’m at the end of my tether. Please help me.” I was on the phone to my IBD nurse, begging for help. I’ve never begging for an admission but that is what came out of my mouth next; “I’d really like to be admitted.” She wasn’t shocked, just said she’d need to speak to my consultant and surgeon to find a bed for me on the Gastro ward – always going to be a big ask but I knew she’d come through for me […]

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The end of Biologics: Colorectal Referral – 12.01.16

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Hello 2016..?

I started 2016 in pain, surprise surprise! I slept through all the new year celebrations, awaking groggily in the morning, trying to find some strength. Why would I need to find strength knowing it was a Bank Holiday weekend, I hear you ask? Well, I’d received a letter the day before; a consultation with a new doctor at my hospital, a surgeon I found out once I’d Googled him (something I don’t like doing but curiosity was killing me) and I was going into over drive as to why and boggled by the short notice. Was something wrong? Was I […]

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Elemental, my dear Louise

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