I had really hoped to be at home by now, spending time with Hubby and the kids during half term. But instead I’m writing this from my hospital bed. Frustratingly there doesn’t seem to be any hope of me going home any time soon and I’m getting a bit fed up.
In my last blog I wrote about the steroids rollercoaster that I’ve been on for the last few weeks. This last week has again seen me on IV steroids yet again after having an awful flare up last Thursday. It seems that after a few days on oral steroids my bowel goes “erm, not having that!” and throws a hissy fit. The pain goes off the scale; the only way I can describe it is it feels like I have swallowed razor blades and they’re steadily working their way through my bowels shredding me from the inside out. And then there’s the fun of either having to go to the loo 30+ times a day or the alternative when everything grinds to a halt and nothing comes out. Things were so bad that I ended going down for another CT scan last Friday so they could see what was going on.
As well as trying to get this Crohn’s flare up under control the other isssue I have is my continued low phosphate levels. Who knew phosphate, or the lack of it, could cause so many problems? Well apparently my levels are dangerously low and discharging me just wouldn’t be safe as I could have fits or stop breathing. Neither of which are ideal are they? They’ve been giving me 2 or 3 bags of phosphate every day and last week they even started adding in additional phosphate to my TPN feeds in the hope that would help my levels increase. But no matter how much they pump into me my levels remain at rock bottom. And nobody knows why.
Initially the consultant thought that the iron infusion I had way back at the beginning of my admission may have caused the problem but yesterday he said he’s wondering if it is in fact the steroids. So the plan is to put me onto oral steroids tomorrow and then begin the process of weaning me off them. Steroids can’t just be stopped as if you do then your adrenal glands can stop working and that causes a whole heap of problems. So you have to reduce the dose gradually, usually over a few weeks. But I haven’t even managed a full week on oral steroids yet, let a few weeks so I’ve no idea how this is going to work out. But if I need to get off the steroids to fix the phosphate problem and get home then maybe I will just have to grit my teeth and bare it.
Yesterday I had my adalimumab injection (the immunosuppressant medication) and the consultant has decided that instead of me having it fortnightly they’re going to give it to me weekly. He thinks that if anything will help get me off the steroids and get the inflammation in my bowel under control it will be this medication so he’s not holding back. To be fair I think he’s just as frustrated with the whole situation as I am. He knows I want to get home; he wants to get me home. It just seems like at the moment we take one step forward and a then two steps back.
The hardest part of all of this is not having an end in sight. I think if they could say it would be 2 weeks, hell even if they said it would be 10 weeks, then I could get my head around it. But it’s literally a ‘how long is a piece of string?’ scenario. And at the back of my mind I’m starting to think of the C word. There’s 61 days until Christmas and I’m wondering how many of those I will be in hospital for. I’m wondering how much of my shopping I’m going to have to do online from my bed. Or how much extra stress it will put on Hubby to have to add Christmas shopping to his already overflowing to do list. But then I’m also thinking that if they get me sorted before Christmas I have more of a chance of being at home on the big day and maybe even being well enough to enjoy it. In all my years of being unwell I’ve never been an inpatient on Christmas Day and that’s how I’d like it stay! I’ve been discharged at 6pm on Christmas Eve once and been admitted on the 27th December but I’ve always had Christmas Day at home. Even though the kids are bigger now I just don’t think I could cope with being away from them on Christmas Day and I think it would be the thing to tip Hubby over the edge. So for now I’m going to continue to rest and hope that my body starts soaking up some of this phosphate they’re pumping into me.
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