Infliximab #14 – The final one :(

All ready for my mini London adventure! :)
All ready for my mini London adventure! πŸ™‚

I got my usual pre-Inflximab blood work done ahead of schedule as an add on to my recent GP appointment, so theseΒ were all done and dusted two weeks before my infusion. In the lead up, I spent time working hard in my new job and treated myself to a mini adventure / Bank Holiday weekend getaway in London. Only to be in agony. I was definitely coming down with something but I persisted to be there and meet up with my old university friends. But I was sick – sick like I had experienced in a very long while and it took me a good amount of time to shake it off. But I did have an amazing time away from home despite that. I came home and was hit with a massive dose of fatigue – usual for my final few days before my infusion – and just let my body catch up on sleep, as much as I could.

So by the time my infusion came round on Monday morning, I was feeling okay. I was hydrated (or so I thought) and off I went to the hospital, remembering that my repeat drug and antibodies needed to be drawn before I could receive my medication.

Get the canulla in first time – internally shouting “WOOHOO!!” – and get my bloods taken. Tricky when a) the canulla plaster won’t stick on its own, so I have a ton of micro fibre tape slapped on my wrist to keep it in place; as my tiny veins can cause alot of resistance once on the pump (more about that later) and b) the vacutane won’t actually let me give my blood up willingly. We had to keep pressing my vein to help it draw into the vial and that took a complete age and was really hurting me. Once that was done and the line was flushed, I felt much better.

Taped up: unusual for a canulla plaster to not stick
Taped up: unusual for a canulla plaster to not stick

The pumps for infusions are different to those that deliver IV fluids and medications. They have a pump that regulates the flow of the fluid into my vein, a line with a filter on the end that helps filter the solution so its finer / purer. I’m not exactly sure as to why this happens but the actual pump means that the machine can calculate the resistance it has to push the liquid through the line and into the body. Small veins mean more resistance so much that it can either cause pain in the patients canulla site or it can blow the vein and stop the medication going through at all. I had to rest my hand in a certain position (alot like the claw hand Chandler has in Friends) so that my resistance was kept low and the canulla didn’t blow. The last couple times this has been a worry of my infusion nurse and my small veins cause her alot of concern.

A close up of the Infliximab filter in action
A close up of the Infliximab filter in action

I was getting creeping abdominal pain almost half way through – the sort of pain that makes you feel nauseous; that I’ve had on and off for a week, ten days now – and I knew something wasn’t right. The infusion finished and my observations were done, I was sent on my merry way.I grabbed a coffee from town and made my way home for some lunch. Came in, put my pjs on and sat in front of the TV for some catch up before the boyfriend came round. But the pain didn’t really go away. I started needing the loo with urgency and it was like a flood gate; everything was just coming out. I’ve never had such a rotten, awful feeling day on my infusion day. NEVER.

And it hasn’t stopped.

***

I’ve had the delight of spending half of yesterday and all of today off work. Last night I experienced another delightful bout of vomiting – I’m not really a vomiting Crohn’s patient – and more horrendous abdominal pain. All the while; thinking, knowing, that this just isn’t working any more. Why am I putting my body through this? I’m scared to eat because i don’t want to be sick again (seriously, it was truly disgusting and awful) or have god awful pain. The urgency to go to the loo isn’t letting up either, but at least that is something that is almost familiar to me at this stage on my IBD journey. So after phoning in sick to work, I called my IBD nurse.

We had a lovely chat once she returned my call, the long and short of it being that “no, this isn’t working“; agreeing with my doubts since Monday. It’s not a decision to be taken lightly and it certainty wasn’t a happy and cheerful conversation but it was honest and realistic. Having me fail biological treatment like Infliximab was a shock. Back in the Spring when this first happened, I was happy to take baby steps forward and try building myself up to stronger, more potentially harmful treatments by gradually changing my current plan – decrease the time between doses and add in Methotrexate – before we gave up. And that was sound advice after my blood work showed low drug retention and high antibodies. I wasn’t expecting that, nor was my GI. I follow his guidance, I trust his opinion; even when he says he doesn’t know what to do. So to be told today that really, in hindsight we shouldn’t have done that, and they won’t do that in the future in the same circumstances; was disappointing. But I’m okay with it. I know it did good for a while but now… it just isn’t. It’s gotten me this far, so I can find a new step. Just in time for Vedolizumab; my IBD nurse said. I am going to be put forward for it at the next departmental MGT (a team meeting where biological patients and their progress are discussed); but it came with a warning that it doesn’t have a great uptake with non-biologically naive patients – some where between 13% on loading and only up to 40% – it is no way near a definitely sure thing and it is not a fix. I am still looking at new MRI images (which I was expecting to happen, regardless, this Autumn) and going to Nottingham, possibly now even Oxford.

I’m willing to give it a whirl but how much of this is just putting off the somewhat inevitability of surgery? Its the big unknown and the big elephant in the room.

Elemental, my dear Louise

I had put off contacting my IBD nurse for weeks and weeks. Things were steadily going down hill, pretty much since the beginning of May. I started to feel unwell soon after my last Infliximab infusion but put it down to the stress of finding a new job and being unhappy at being at home all the live long week. But as the bathroom trips became more frequent, more painful and more full of blood; the more I started to think it wasn’t just stress. It’s so easy to fob yourself off with just something as “undefinable” as “stress” but […]

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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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Infliximab #5

Another eight weeks have passed..   Another Monday lunchtime spent at the hospital, this time only for two hours; a one hour infusion followed by a hour of observations. As always, there were problems prior to the infusion, discussed before the weekend in “Spring Forward” concerning my liver but after being given the green light to attend, I turned up, fretful from a good yet bad counselling session that morning, to have a difficult time being cannulated. Cannulation, I hear you say, isn’t this a common problem with IBD patients? It can be, yes, but then again, no. Despite how […]

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Spring forward

Nothing like spending a Saturday evening in the hospital is there? That’s where I was two weeks ago, after a painful afternoon of sickness, I succumbed to my body and was taken to our local A&E department. I got assessed, had my blood taken, lots of poking and prodding and then proceeded to wait for my test results. They came in, gradually over the next couple of hours; move from a stomach bug, to a infection, to a possible Crohn’s flare up, to finally a inflamed and angry liver: Β my ALT level was 214 Β – it is usually between 0-45/50 […]

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Infliximab #4

So, its been eight weeks since the last hospital visit for the magic mouse juice. This time, I was due to have a two-hour infusion and only one hour of observation. I had gone the eight weeks as was set out by my GI, IBD nurse and the hospital’s Gastro MGT team. Eight weeks are the standard set of time between infusions. As I had gone up and up in time between the first initial “loading doses”, I was now going a whole two months without another infusion and boy was it a long time! I had a great first […]

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Rough / Cough

This has been a rough one for me, more so than before. I can’t quite remember feeling this awful before, without the bowels going crazy and my body flaring. This, in all sense and purpose, is a cold. But given my immunosuppressed body, it has hit extremely hard; with each day providing me with a new and strong symptom, so much that I finished work on Friday afternoon – after a five hour shift that mostly consisted of me sneezing, coughing and generally loosing all sense of body strength and temperature control – and could not see any light at […]

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Half way through or half way there?

So, this week I’m half way through my four weeks of this second infusion. This also means, I’m more than half way to my next infusion too. In fact, its 9 days away and honestly. I’m excited. The difference between now and before Inflixmab is huge. And add to this how different I feel between first and second infusion, and now, awaiting the third, it’s quite amazing how this is really helping. Now, as you already know, I am not biological naive, meaning I have received biological treatment for my Crohn’s in the past. That was between December 2011- and […]

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Infliximab #2

Two weeks came around fast. I could hardly believe it was my bloods check up last Friday, let alone how quickly the weekend came and gone, then it was Tuesday. Time for an all day stint at the hospital, sitting around waiting for time to pass. This time, everything was delayed. I was on a later appointment schedule, so that I could make my already scheduled GI clinic appointment that afternoon, and from the start, it was running late. There was already three other patients on the pumps, so I had to wait for the first to finish, which was […]

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Infliximab #1

Yesterday was very interesting. I am very used to being at the hospital, the regularity of my clinic appts and my ‘need’ for blood tests within the NHS trust system, I’m there at least once a week some weeks. That being said, it was extremely nerve-wracking waiting to be called into the infusion room. With my regular IBD nurse off sick at the moment, I was handed over to her back up, partner in crime and she administered my medication. She is great, not as brilliant and proficient and professional as my regular IBD nurse, but she was just what […]

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A bag of nerves

So, tomorrow is my first Inflixmab infusion. This is my second and final attempt at a biological treatment for my Crohn’s Disease. Last December the decision was made, after much discussion and scoping, that I was to stop Humira. I was feeling a mixture of relief and freedom. No more fortnightly injections, no more struggling to get through a 14 day cycle, no more crappy immune system, I could finally start a Crohnie life without medication. For both my medical team and myself, it was a little test to see how well my body and disease could go without medical […]

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Infliximab

Yesterday I got the call that will hopefully start to change my Crohnie life again. My IBD nurse confirmed that the GI GMT have successfully approved me for Infliximab.Β  I go back to the hospital next Tuesday for a “routine” clinic appointment to fix my first infusion date, after my bloods, TB test and chest X-ray. I had had an god awful day at work. Short staffed, in pain and bloated to within an inch of my work uniform, I was eagerly anticipating my vibrating phone my apron pocket, telling me my answer was finally here. I was in completely […]

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