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 in between appointments; despite my Crohn’s being ‘stable’. And as recent events have shown – read more on my troublesome summer, especially August here – it was only a matter of time before my body threw down a red flag and caved to the demands of my disease.

I received my second loading dose of my third restart of Vedolizumab this morning. And after the panic of yesterday:

Things went ahead as planned. What was delightful was the fact my IBD nurse made personal time to give me my infusion herself. The sticking point with starting a new biological treatment is the loading dose regime –  three infusions given week 0, week 2 and week 6.

NB: If you are new to IBD being treated with biological drugs – ones in which the medication alters how your cells react to inflammation, read more via NICE or my handy ‘Biological Treatment’ page here.

My WBC and my neutrophils were still raised but given the fact I am responding well to the steroid regime I am currently being weaned off of – ie no abdominal pain, no fever, no abscess, increased appetite and general feeling of wellness – and my Pre-Infusion-Sepsis checks were clear – no fever, no cough or sore throat, no chance of being pregnant, no changes in meds, no numbness or loss of feeling in fingers or toes, good BP and solid 02 saturation – we continued with my usual infusion.

I have been receiving a biological drug for almost all of my time I have spent diagnosed with IBD – I would estimate 4 1/2 of the 6 years I have had Crohn’s Disease for, so far. This means that I am used to being cannulated as an outpatient – which believe me, feels very different to being cannulated as an inpatient for some weird reason – and I am very used to the time spent having infusions too. Apart from Humira, which was delivered by a subcutaneous injection, my biologicals have been IV infusions, delivered by a CSN – usually my IBD nurse. She is a pro at getting me with a cannula first time, exactly like today. That was my first feeling of bittersweetness.

I have developed a close bond with my IBD nurses. They compliment each other well and work well together as a team to deliver a high level of IBD care for the patients at Good Hope. I can not praise them enough and I am ever so grateful for all their hard work; most noted is helping transition my care this month from Good Hope to Peterborough City.

They respect my experiences as a patient and know that I am proactive and determined to live well despite my chronic illness. Our relationship is one based on mutual trust and admiration and I will be sad to not see them again. But new relationships with new medical professionals need to be built and carved out from what I have already learnt and how I now go forward with my health and life.

 

What comes from today is a feeling of purpose.

It feels like this was all some how ‘meant to be’ and despite my sadness over being back on medication and realising that I still have the Crohn’s Disease, I feel lucky to be able to receive my medication, that it was approved and it is already helping me get back to my own ‘normal’.

My blood work is in good shape – my CRP was in the mid twenties on my discharge from hospital 10 days ago and today it was TWO. That is bloody amazing. My LTF’s are within normal range too as well as my U&Es. I next have bloods taken in two weeks ready for my third and final loading dose, this time in Peterborough. I’m weirdly excited and nervous about using a new NHS system and Trust to have my usual IBD blood work done and receiving my treatment. I have half a dozen hospital appointments lined up for October so far, so I am sure I’ll get used to it pretty quickly. I feel grateful that I have experience on my side. I remember how daunting trying to navigate the NHS was upon my diagnosis. That feels a lifetime ago but the lessons learnt and the tips & tricks I have transfer so easily.

Yes, sometimes being a patient is like having another full time job!

Sadly – or wonderfully – I enjoy being a patient. Not something often said and not something I would have believed I would ever say, but I take conform in being looked after. I take a stand when I know something isn’t right but I like being in the system. I feel cared for and known; even if it is as a “troublesome patient” with “a complex pattern of disease”.

In 3 1/2 weeks time, I’ll be almost at the end of my steroid course, I’ll be exploring the infusion clinic at Peterborough City Hospital and the next chapter of the IBD adventures continues.

The Return of… Everything

Follow my blog with Bloglovin   You always want to believe your consultant when they say “maybe we’ll be able to go a couple of years without any medications or big issues“. You believe because that is the sort of IBD dream isn’t it; managing without medical intervention? It was for me, back in June at my last appointment; full of confused optimism. Fast forward not even six weeks and I was bed bound, in constant abdominal pain; unsure of what was happening to me. I would suffer for weeks, spending days on end in and out of the hospital, […]

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“Remission” – One Step Closer

I have questions. So. Many Questions. 1. How do you determine if surgery has succeeded? 2. How do you measure ‘remission’? 3. Can you actually achieve it? 4. Do I want to be medication free? I hope these all seem logical, or at least follow on from each other. Maybe the additional, and probably first question should be Why am I asking these types of questions?   The period between Christmas and New Year was eventful for me. Not only did I catch some sort of stomach bug which really affected my ostomy – like it should do, really! – […]

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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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Vedo #5 – The Finale

Despite my best efforts, it seems my current run of Vedolizumab is over. This is what happened at the turn of 2015 into 2016: “I’ve finished my loading doses of my Vedo! That happened two weeks ago and was eventful as always – six attempts at cannulation; two of which were blown veins whose bruised still haven’t faded yet – and I spent 10 days post infusion with pain and severe aching muscles. Neither of which have completely gone and neither of which my consultant can fix, it seems. So I await the New Year and with it bring an […]

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The end of Biologics: Colorectal Referral – 12.01.16

I saw a surgeon last week. I’ve had Crohn’s for almost four and a half years but this is the first time I’ve been anxious like this in a very long time. It’s certainly the first time I’ve come face to face with a surgeon. It was nerve wrecking. The judgement of my disease and the awkward chit chat my IBD nurse made whilst he read my most recent scopes and scan results – MRI in November and scope in Sept 2013 (27 months ago) – felt like the longest ten minutes of my IBD life. Even more so than […]

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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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