December always feels like the most scary month for me.
I have no triggers or flashbacks for this month in particular, but there is such a drive away from routine and towards joy, that it makes it a hard time.
The last time I felt like this was back in 2015. I had been having numerous issues across the spectrum of my IBD. They culminated in an increased feeling of fear; of what was going to happen, what that could mean, of what I’d have to go through and what it would result in.
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 it’s 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 definite decrease in how well I feel in general, an increase in IBD symptoms and a lack of a response from my body to treatments.I am scared.
I think, honestly, I was scared – see here, petrified – of surgery. Despite all my ‘big’ talk of being okay with it, I still didn’t want it. Despite knowing my medications were failing big time I was hesitant to look into what my options surgical wise would be. Little did I know that by the end of that year, I would be booked in and discussing surgery within weeks.
What else was I scared of?
Being hospitalised during Christmas.
I feared that – and still fear it – a great deal.
Since getting my stoma, that fear has been greatly lessened because I am – or at least felt – more in control of my IBD during the festive period than ever before. I knew what I could manage to do, what I could eat and actually planned ahead. That gave me great comfort, knowing that I had a plan of action – I could get cosy with my reality. And that is something I always want to have, feel and be.
This year; well this year has been a fucker.
COVID has changed the shape and nature of Christmas this year. The focus has changed from travelling home and being with family, towards being happy and safe at home. We have video calls, there are texting and photo messages to keep us all connected. But there is a big elephant in the room.
My IBD. It’s beginning to flare up.
Or it’s been flaring for the year and it’s been secondary to my hernia and subsequent surgery. Its causing pain and nausea – much the same as the rest of the year – but with my hernia fixed, it is a cause for concern. Put a small pin in the fact that COVID is a risky thing at the moment and the usual flu and colds and coughs in the winter; there is no plan yet for if I have been having a flare-up and if I need to go back on medication again. The not knowing is a time killer at the moment because all I want is my ability to feel better and plan ahead.
I swear, this year, has just destroyed all plans. So why am I wanting to plan ahead with my IBD? Because I do not want to experience the hospital at Christmas. Nope, nope, nope. Big fat nope all around.
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 am scared.
So, this fear, this feeling of being scared, it’s been a while but its familiar.
It’s the nervous energy in the bottom of my stomach that makes me low key panic when I get pain or when I get a temperature – most of which people would say these days is just COVID anxiety but nope, this is more cemented in me than a pandemic, it’s ‘chronic illness life’ – it is frustrating as heck. As well as being comforting. Is it weird that I am comforted by my body and my disease showing up right now? Like, I knew something was off but couldn’t put my finger on, couldn’t really figure it out?
But here is the thing; it is a legitimate thing to fear hospital during Christmas. Of course, pre requesting it here by saying, if I need to go in and I will happily go in and see what happens, but I shall also be doing all I possibly can to not.
The formation of the ‘flare-up possible’ plan is coming together. I am expecting more results this week, so sitting tight is priority number one. Second on the list; keeping relaxed and rested. I spiked a fever over the weekend so not keen on this rollercoaster being exasperated any more than needed.
Thirdly and most importantly, I need to go in for an SB MRI scan, it’s been two years since my last one. There is a good and strong need for this to happen ASAP – it will give a better indication of any stricturing disease – and while blood and stool samples are good, they aren’t good enough to stand alone. It will also be put forward for evidence if I need to return to biologics.
So while I don’t feel myself or 100% I do feel better than I have done in other flare-ups. And without a colon, I’m still unsure how a flare-up would present. Or, if it’s been simmering for a while – let’s say since my last calprotectin results in February – then maybe I am sort of used to it? That it’s become ‘normal’? It’s also important here to note, that flare-ups vary from person to person and well as differing in the same person, at different times!
Do you have any questions or queries? Or just want to share your own experiences?