Do you ever have those moments when you just think ‘What else can be thrown at me?’
Not that I haven’t been feeling okay lately, but its been chock full of just things that need to be sorted and nothing is every simple with me.
For one reason or another, every week for a while, I’ve had my blood taken. Sometimes for my IBD monitoring or a potential flare up, my liver levels checking and then for clinics. It’s been pin cushion central, and I can handle that but it’s not normal is it?
The reasons for the blood test is another thing. There was my post Vedolizumab infusion liver check ups – as they still come up raised before hand and go down afterwards, something we have been monitoring for almost four months now. Then there was the possibly of my pain and rectal issues being a possible IBD flare up – it reassuringly wasn’t but my gosh, anxiety amiright? And finally, there was the twenty-one bloods that my new liver specialist took from me at our first clinic.
With regards to my liver, I am going back through all the testing once again. Bloods first, then a Fibroscan – both of which were done at my first appointment. She booked me in for a special MRI scan which will focus on my bile ducts and my liver – called a MRCP coming up in two weeks – and the results of that will determine our next appointment and what we do next; this will mean an actual liver biopsy. It’s been discussed with me before with my previous liver specialist, but because its painful and invasive, they held off. It now has become important to actually have an answer as to why I keep getting very high liver test results. I plan on getting some research done on the liver, but at the moment, I’m just trying to process the need for more and more tests.
The same day, I had a review with my IBD nurse. He gave me the results of my biopsies taken from my Flexi-sigmodoscopy done in mid Feb and it showed some ‘focal inflammation‘ but does not specify where, which is very unhelpful. But reassuringly it said it wasn’t cobblestoned or granulated which means it’s not more Crohn’s in my butt. However, inflammation could be a sign of what could be coming; I’ve been experiencing pain, lots of discharge and its generally an uncomfortable area, even after a course of the rectal foam enemas to calm it down. He assured me that my Vedolizumab should be working in that area, despite not being connected my new digestive tract (with my stoma). But, if its inflamed, we need to investigate after my next round of it in mid April.
They discussed me for potential surgery for its removal in their MDT meeting and I have yet to hear back on the outcome. At the moment, it’s a wait and see approach. I did say I was open to first trying a second line of medication along side my Vedolizumab infusions – which would be going back on Methotrexate as Azathioprine and Mercaptuprine are both out due to reactions – but that won’t happen until next liver blood work is done at the end of April. The end goal is to get the rectal stump removed, but it needs to planned.
So, it’s all go. It’s alot to remember, a lot to take it, a lot to consider too.
I’m usually not one to worry about my health as long as my medical team are on the ball – which at this moment, they are. But sometimes, I wonder what I’ve done to have all this happen to me. I’ve accepted my Crohn’s disease, accepted my stoma but this liver stuff and the fact a medication does not work 100% for me, for a lengthy period of time, frustrates and upsets me. I hide that part well, but I actually cried angry tears when I had to tell my employer about all of this. Because it means I have still not got any complete resolution to my issues and all I want is to be well. All I want is to work, be good at my job and live a good life.
Some how, I tend to thrive in the chaos.
Or at least, that’s how I feel. I find more energy and more inspiration when my ship is in rough and troublesome waters.
Until next time,