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 in IBD symptoms and a lack of a response from my body to treatments.” – Except from “I am Scared” Dec 13th 2015

“… I was starting to lose it. This is just getting ridiculous! What other options have I got left?! When will my body start to response and give me a fucking break?! When will be able to start living again?! Without really considering it or even consciously knowing it, I’ve been shying away from life, saying NO more than say YES and wanting to be at home instead of out enjoying things. Most days this is down to fatigue and pain but more and more often this is because I don’t want to because I’m waiting. Waiting for my body to be kick started and I can hit the ground running.” – Except from “Hello 2016” Jan 7th 2016

We decided to call it quits later on in January; pursuing a surgical option at Good Hope and a second opinion at Nottingham Queens.

That was probably the mistake we all would come to regret in August. After the agony of going through with a Right Hemicolectomy and then my horrible ‘recovery period’; it was concluded that Vedolizumab had indeed been working, if the results of my colonoscopies were anything to go by. There was one done in March and then again in August and the difference was completely and utterly shocking: healthy colon and 99% sparing compared to a blood filled and deeply cobblestoned colon not six months later. So here we are, one colon less but with a wonderful ileostomy later, to try this drug again.

The reasoning behind trying this again was twofold:

  1. I had no disease in my digestive system holding me back from getting the full force of this drug
  2. Given the history of how my disease progresses, it was prudent to be on Crohn’s medication ‘just in case’ and to keep anything that could occur ‘at bay’.

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I admit, I was very sceptically when it finally came around to having this medication administered. I was happy enough to go ahead when I was notified about this plan whilst in hospital recovering from my subtotal colectomy. I was the healthiest I’d been in a very long time; I didn’t want to ruin that by taking something that could potential affect that in a negative way. But, I could also see the logic in taking it: I was pre-empting any attempt my disease could have to attack me again. It was unlikely to happen so soon after surgery but they had reassured me once before that surgery would help and it didn’t; it had only made me worse. I was better to be protected than left vulnerable to my Crohn’s flaring before I could receive anything to help. I suppose in a way, my ileostomy journey made me more of a priority to my IBD team; I really had been very sick and they wanted to avoid making the same mistakes again. Good; we were finally on the right page and moving in the right direction.

20160926_101048615_iosMy previous attempt with Vedolizumab lasted just short of three months – receiving the three loading doses and one scheduled dose – and I hardly felt any effect of the drug in my system – negative or positive. I felt the same after my first infusion on this restart so I wasn’t holding out any hope that it would be any different this time around. I was feeling pretty healthy and happy from having my diseased colon out; I doubt I would have noticed. But once I had my second infusion two weeks after my first – October 10th – I was definitely feeling something. Was this hope, maybe?

Infusion two happened on Monday and it wiped me out for the rest of the day and the following 36 hours. Only today do I feel really capable of doing more than just resting up. I am taking this as a good, preliminary step forward.

I don’t think I will ever really stop doubting that this is working for me. Statistically; only 1 in 4 patients have a response to this drug. It has a now 20 week cut of period to determine if its working because it targets white cells specifically in the gut; compared to Anti-TNF drugs such as Humira and Infliximab which target a specific part of every cell meaning its responsiveness is felt quicker by the patient. You can’t test the effectiveness or the levels of Veolziumab in the patient’s system like other biologicals either; the only data to go on is blood work – CRP, FBC, U&E’s and LFTs – and if a patient is symptomatic. It’s also quite expensive; almost £3,000 per infusion.

20161010_083326618_iosWould I be better off not having it? Am I doing myself more harm than good?

Good questions; something we’ll never really know for sure because it’s such an unknown. There is no chance of a do-over.

Every decision comes with its own risks and benefits. Determining which way you move forward depends on if the benefits outweigh the risks and by how much. I’ve done it for so long now, it’s almost become second nature. It’s the one thing that keeps you on your toes as a patient with a chronic illness; things are always changing – either medications fail to work, your body or disease stops them from working or new and different treatment options open up – it’s the battle you didn’t choose to fight. But it’s necessary.

Please remember, what works for me, might not necessarily work for you. All medical decisions should be discussed with a Gastroenterologist or treating physician.

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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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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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RIGHT HEMICOLECTOMY WITH CYSTECTOMY – 12.05.16 – PART ONE

So last time, I had just had my pre op assessment for my surgery. I’ll admit, that appointment was extremely helpful – it calmed me more than I had expected and I finally felt relaxed for my operation and I knew I had made the right decision. On the morning of my surgery – Thursday –  I packed my overnight bag with some pyjamas, face wipes, my phone charger, kindle and dressing gown. I was told I was being admitted via the Day Surgery Unit at the hospital at 1pm. My dad had kindly taken the day off, so we […]

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GYN Surgical Consult – 19.04.16

The morning after arriving home from holiday, we were back at the hospital, seeing yet another surgeon. Thanks to my colorectal surgeon’s quick referral, I was going to see a gynaecological surgeon to discuss the removal of the cyst on my left ovary that was discovered on my last MRI in October 2015. I’m very glad it only took a week to get into a clinic to discuss this with them; it had been the one thing that had plagued me throughout our holiday – sleepless nights and irritability with my additional pain levels – I was more worked up […]

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Colorectal Surgical Consult – 11.04.16

So yesterday was my second appointment with the bowel surgeon at my hospital where my IBD is treated. After a positive GI clinic appointment last week – which you can ready about here – I was in two minds to expect a date for said surgery – a limited bowel resection – so soon; at the very least I was hoping to be put on the waiting list. This consultant’s wait was roughly 3 months when I enquired at our last appointment in January; if this was still true – unlikely given the upcoming doctors strikes – that would put […]

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Sunday; the night before

Feeling nervous about tomorrow’s appointment at the surgical clinic. Want to have it all booked and sorted so I know what I’m working towards this Summer but really dreaded it finally being in black and white. *** I know this is the best option right now. In fact, it’s sort of my only option right now. I’ve failed everything else, and even though the combination of biological drugs have made my colon better in the past twelve months, my terminal ileum is a mess. And it needs to come out so I can move forward; in so many ways! With […]

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Colonoscopy – 08.03.16

The information below is taking from the patient packet received with my appointment letter. Please contact your own hospital for information on this procedure, if you are requested one, as information can vary between NHS Trusts. What is a colonoscopy? A colonoscopy is a technique to look directly at the lining of the large bowel (colon) to try and find out what is causing your problems. A colonoscope is a thin, flexible tube with a bright light on the end. This tube is passes through the back passage and into your bowel. It allows samples of tissue (a biospy) or […]

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GI Clinic – 23.02.16

I’ve been due to see my consultant since December. The plan was to have a chat about what appointments I’ve had since we last saw each other, how I was feeling after finishing up Vedo – it was imminent to failure at the end of 2015 – and plan what we would do next. The latter of these three things has filled my mind with questions and full of confusion. I was unsure of what would come from my surgical option, what would come from seeing another Gastroenterologist at a bigger and more research led hospital and what would really […]

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This time last year…

.. I was experiencing my first really serious bout of “on-medication-but-feeling-as-if-I’m-going-without”. I had just completed my first year of Infliximab and I’d made it through Christmas. Boyfriend and I had plans to get away for the February break and picked Cornwall for a week’s holiday. I would have my infusion at the start of Feb and that would usually keep me going for at least a month. Oh how foolish I feel now. February 2015 was horrible. I would still have my Infliximab but I had lost total response to it; I wouldn’t be tested and know this for sure until […]

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Scope booked – oh the dread

FINALLY! After numerous phone calls, I’ve finally received my complete paperwork for my colonoscopy. Pre-assessment on Feb 23rd and procedure on March 8th. So after all this time waiting and then chasing for my appointment, I’m just as eager to get it over and done with. Its never a pleasant experience; which starts with many many cups of prep to get through, the enema on the morning, having a canulla placed when dehydrated from all the clean out work I would have done and then having a camera put up your butt. There are two siliver linings: 1. Full sedation […]

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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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Liver, PCOS and IBD – What a combo!

I am awful at keeping things up to date recently, but I’ve had alot to mull over and consider.   Since Infliximab #8 I’ve been to the hospital for various appointments. I’ve seen my Liver specialist, had a small bowel MRI done, finally seen a Rheumatologist, my gastro, a dental surgeon and my GP. None of these things are new nor are they unrelated; they have all somehow become interlinked. Typical. So after my last infusion, I spent my half term building up to a small bowel MRI. Nothing about it was pleasant, but I was suffered from the tail […]

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Infliximab #8

Yep, its been the two month wait for Infliximab. Feels longer; it was overdue by a week, caused by scheduling problems. Alas, I attended the hospital yesterday; after a problematic and rough week or so; very glad to be there and finally getting my infusion.   Prior to this, I had two lots of bloods taken. Both were okay, not as good as usual – WCC was up along with my CRP but my LFTs (and associated liver function tests) were falling FINALLY! – but what was troublesome to my GI, IBD nurse and infusion nurse, was these tingling sensations […]

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Infliximab #7 and Liver Problems

For all of 2014 my liver function tests have been steadily rising. When the new GI took over just before Spring, I suffered a couple of problems that lead me to A&E on a busy Saturday afternoon, in which we discovered how high my AST and ALT’s were – way over the parameter maximum of 40; some where in the 200’s – and the testing began. My GI order ultrasound, more bloods and finally a MRI scan in June before referring me to the Queen Elizabeth hospital in South Birmingham. My appointment was last Thursday, two days after Infliximab number […]

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Infliximab #6 and more…

Updates galore tonight – I’ve been extremely busy and to some extend, ignoring my problems a little. The build up to the latest Infliximab infusion was interesting; ten days before I started experiencing extreme fatigue in my leg and arm muscles. This would get a little worse each day, until four days before when I was unable to raise my arms higher than my shoulders. I consulted with my GP to see if this was an inflammatory response from an infection I had (possibly) or were my joints being attacked because the Infliximab was all but gone? After a round […]

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World IBD Day

As this ordinary Monday comes to a close to many, I sit here going into the final few GMT hours of World IBD 2014 with some unrest. Should I show them? No one has seen these before, I’ve not allowed myself to bear these photos to other humans, not even other IBDers.. what am I scared of? What am I afraid of, apprehensive about? Why not be brave and share you, Louise? Yes, I even full first named myself, that’s how much of an indecision this is. But, I want to show people what IBD can do to you, of […]

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