I am scared.

There, I said it.

It’s something I have been working up the courage to say out loud for a couple of weeks. But I’ve felt it in my gut for a long while now and its been making a break for freedom, unknowingly seeping out of my mind and into my actions and reactions.

So what am I scared of exactly?

Well despite my best efforts over the past year or so, my treatment plans of the last 12 months haven’t done much but keep me slowly declining, health wise. My MRI scan in November has shown a big 20cm of my terminal ileum that is bad, my current strictures – three in total – being kept at bay by my biological treatments and general active disease in my bowel. 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. Those treatments have been Infliximab on its own, Infliximab with Methotrexate, IFX and MTX 6 weekly and now Vedolizimab.

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 a early Vedo infusion – a full three and half weeks earlier than planned – to help try and increase my chances of this medication catching and bloody working. I so badly want to be the 1 in 4 that has it work but I can’t rest all my hopes on that. I need to look forward.

And forward is Nottingham Queens Hospital. In late January to see a new consultant, one whom I’ve heard so much good about, who is specialised in “difficult” cases and who is at the forefront of IBD advancement. I hope he has some answers. Or at the very least a new option for me to try, because my current consultant has tried everything since meeting me 2 years ago. It seems we have come to the scary option of surgery, if all else fails.

My last GI clinic appointment was this week and the conclusion was thus: “We always wanted to avoid surgery until nothing else was left and you may need to prepare for that now. I shall see what options we have here for that, if Nottingham proves fruitless”. Here I am hoping he hopes that Nottingham have something that he hasn’t.

Then I went for my liver check up at the QE; to be told it has come time to run more tests. Starting with new blood work to see if my inflammation liver markers have returned to normal or if they are still elevated. If so, then a MRI and a biopsy are probable.

I can’t help but laugh and cry. Sad because I just can’t catch a break with all of this and it feels like it is snowballing and I have no control but smiling because only a pile of bad news like this could happen to me.

So I am scared of all of this. That I’m trying so hard to get some control of everything, I’m trying to not be angry but being angry is all I can feel.

I need some help but I don’t know what help that is and I feel frustrated that I can’t find an answer. I’m glad that I am feeling it all instead of hiding it all away and refusing to deal with it, but a part of me just wants to push it down inside of me and being happier with my life.

 

 

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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