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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The Return of… Everything

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, not really getting any answers or […]

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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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