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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Erythema Nodosum – My Extra Intestinal Manifestation

This time last year I was going through a rather rough time. I had just left hospital after a week’s admission to treat a bowel infection following my bowel resection in May. Antibiotics, fluids, nutritional supplements and lots of rest later, I came home. Unfortunately, it would not be my last visit to the hospital that summer. What I did start to develop at the end of this particular admission were red lumps on the back of my forearms. They looked like bites, they were incredibly itchy, as well as being really swollen and sore. Throughout the rest of the […]

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Being Medication Free: It’s Effects on My Body

Let me begin by stating some facts: Since I was diagnosed in 2011, I have had only two short spells when I did not take any medication for my condition. Those two periods of time were only a couple of weeks long in each case. I have tried all the conventional medications for my Crohn’s disease – meaning I have not taking any experimental or trial drugs to help my condition. My last method of controlling my disease was surgery. Let it be known that I do think that medications can help IBD. There has been many years of information, […]

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GI Clinic 21.03.17

This has probably been the first time in forever that I haven’t really been bothered about going to see my Gastro. I haven’t really had any problems; I’m not taking any medications, my wounds are all healed, my surgeon is happy with my current progress being made and my stoma seems to be getting into a solid routine. All good on the symptoms front; nothing to report. But, I still attended because I felt it was high time he saw how well I had been doing, what I actually look like when I am well. And it was a good picture. […]

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Coming off “The Radar”

I’ve had Crohn’s disease for over five years now and I think in all those years I have never ever been off the departments radar. You know what I mean right? I’m always causing trouble. If its not for being in hospital on their ward, I am taking biological medication and they discuss me in their weekly MGT meetings. Sooner or later I become unstable so I am then discussed because my case is complex and complicated; they discuss possible new ideas and plans for me. I imagine once I was a surgical candidate – the first time around! – I was […]

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Remission: I AM IN IT

So, this week is proving to be quite good. And I want to share my good news, because lets face it, sometimes it happens so infrequently, I just get too excited. Today I’ve had the results of my MRI scan from last week come back, in the form of my IBD nurse calling me to cancel and rebook some appointments with me. I enquired to what was open on the system for me yesterday via email so when she called me, I was abit confused. But its good news! After just five months since my ostomy surgery (and four months of […]

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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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What I’ve Learnt after Three Months with an Ileostomy

  Yes, it’s already been THREE MONTHS! Can you even believe it?! I know that three months is nothing in the scheme of things, and even three months out of 2016 doesn’t feel like an incredibly long time, but to me three months is a lifetime. When things don’t go right or you have problem after problem, even a week can feel like an eternity. That’s what I was experiencing before I had my hospital admission in August. I was trying my best to deal with what was happening to me at the time – codeine addiction and subsequent withdrawal […]

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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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GI Clinic – 15.11.16

I last saw my consultant the day I was admitted to hospital in mid August. I remember how disappointed he looked when he had to leave – he was going on annual leave for the rest of the month – and looked anxious. With good reason too, I would say goodbye to my bastard colon 11 days later. So today when we nodded to each other in acknowledgment before my appointment, it was nice to see him happy to see me. We talked mostly about my recovery from surgery and how Vedolizumab was going. I had received my final loading […]

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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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Nottingham GI Clinic – 14.09.16

At least three months overdue, rearranged twice during my extended post op recovery; we finally made the trip to Nottingham to Queens Medical Centre to see my second opinion Gastroenterologist. It’s always abit weird to see how another hospital organise their clinics. This was our second visit to see Dr Moran – head of Digestive Disorders, specialising in clinical trials for IBD – to discuss my case. Since we last came in January, I’ve had two surgeries, three admissions, two MRI and a CT scan and a colonoscopy. Explaining the last six months was going to be fun. I took him […]

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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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A Spiral of Set Backs

I last wrote anything about my Crohn’s disease back at the end of June. That is almost six weeks ago but feels so much longer ago. And in retrospect, so much but so little has happened. It’s just been one thing after another; without the last problem really going away. So I was being discharged in my last post after my bowel infection from surgery. That problem resolved itself a week after I came home because of the antibiotics my surgeon prescribed to knock it out of my system. It seemed to do the trick; I was eating more, managing […]

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‘RECOVERY’ AND BOWEL INFECTION ADVENTURES [15.06.16]

I was never given any real information on how to recover from surgery. Sure, I got details on what had happened to my body, what I was now missing and how to best adapt going forward but I never expected ‘complications’; even though they were there, in black and white, at the end of the procedure paperwork, to happen to me.  Complications included: Chest infection. Illeus (temporary stoppage in bowels). Damage to the bowel. Ureter damage. Internal haemorrhaging. Bowel obstruction. Stricture. Anastomotic leak. Wound infection. Urinary Tract Infection (UTI). Deep Vein Thrombosis (DVT).  Pulmonary Embolism (PE). All of which were most likely to occur soon after surgery, their chances diminishing the further […]

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RIGHT HEMICOLECTOMY WITH CYSTECTOMY – 12.05.16 – PART TWO

The weekend after surgery saw the most activity. This would be the removal of my catheter, getting out of bed for the first time and finally being able to eat. Having not been awake for the insertion of the catheter, the removal was pretty painless. It was more uncomfortable than anything and it did mean I would now have to get up and find the female toilet at some point; with a PCA pump and a bag of IV fluids. It’s quite amazing how much the catheter was doing for me because it wasn’t long before I needed the loo […]

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ONE WEEK TO GO

Seven more days of having all my insides, still inside of me. Seven more days of this constant, terribly draining pain. Seven more days in this current chapter of my IBD life. I know surgery isn’t a magic or quick fix. I know I will be in pain afterwards, a different pain from the one I’m experiencing right now but I am hoping this will be controlled better and not be constant once I’m off painkillers. I know its a big deal for my body to be put through; the worst its been through is a flare up four years […]

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