Day four didn’t start well, I was up late last night and then very early again this morning on the toilet. Not feeling great at all but the one saving grace is that on a gastro ward there is no embarrassment of bum noises as we are all as bad as each other!!
I’m really looking forward to seeing Timm today as he his back from his business trip and is coming to visit, I’ve missed him so much!!! Thank you Caroline for being my ‘stand in Timm’ whilst he’s been away. His jobs for the day also include doing the school uniform shop, school shoes and back to school haircuts for the three kids as I had planned to do it all this week but obviously can’t due to being stuck here! So good luck Timm!!
I’m trying to stay chipper but I have to be honest and say I’m feeling pretty low today. I just don’t understand how I’m being pumped full of drugs but I’m feeling worse than when I arrived. I feel very sad, fed up and anxious today.
I’m writing these blogs through the day so hopefully will be feeling better later in the day once Timm has been.
This is my stomach, I’m having daily blood thinning injections as I’m at a higher risk of blood clots. The bruises are quite spectacular.
I’m starting to feel frustrated. I totally realise the enormity of the surgery. It’s a life changer for sure, but I’m hoping it will be a positive life changer. I’m so fed up of being ill. I’m gutted that this is making my kids so sad. I just want to be well, a normal person. And if that means living with an ileostomy then I can deal with that.
I just wonder how shit my life has to get before they’ll operate.
I’m sorry that today’s post is a bit of a downer, I suppose it’s just part and parcel of the whole thing. I’m usually good at painting a smile on but today is a struggle.
Timm came to see me today with the kids which both cheered me up when they were here and made me cry when they left. They made me laugh by being thrilled I’m too poorly to eat and so polished off my tea and pudding! I also had a lovely visit from my sister Nicola and lots of messaging back and forth from my sister in Australia.
The steroids are starting to get to me, my chest feels like its pounding and I feel an awful fluttery panic. I’m still not sleeping despite the sleeping tablets and I’m bursting into tears a lot. It’s like I’m getting the side effects without any of the good effects which just doesn’t seem fair!!
My consultant has been to see me and isn’t happy with the lack of progress with the IV steroids. He asked what I would like to do, to wait and see or to move forward in looking at surgery. I said I’d had enough, that after ten years with the disease that surgery was now the right option. He said he was glad I thought that as he thinks its the right way forward for me now.
The plan is now to keep me in for another two days worth of IV steroids. If there’s no improvement by Monday then it’s looking at moving to the other hospital and surgery.
If I improve then they would rather get me well and book the surgery as a planned procedure once I’m off all these drugs in a few months time. So it’s a waiting weekend now.
It’s frightening. I’m frightened. But I just think its the right option for me. I’m on the highest dose of steroids and mesalazine they can give and it’s not making any difference. I know the big boy drugs are just not right for me and so that leaves surgery. I just want my life back. I don’t want to be sick any more, I don’t want my kids to be sad and my husband to have a poorly wife.
I want to live without the fear of pooing myself in public. I want to live without bleeding all the time. I want to be able to plan my future. I want to be a normal person who doesn’t have to take a tons of meds every day.
I want to live.
And if that means living with an ileostomy bag for a while and dealing with a scary surgery (or two!!) then I think I’m ready for that.
I just saw this in a magazine and it struck a chord…
This is a scary time but I’m going to learn to sail my own ship, and that means going through some storms. With the support of my friends and family I know I can do it.
Love Sam xxx