Hospital-selfie because I’m trying to stay positive and because I can.

Thank you to @natsufatsu, @thatchronicfeeling, and @sillyriceball for all your kind words and helpful advise. I will be talking to my doctor again tomorrow about starting trials for vedolizumab but I may still request to speak to the surgical team just so I have a better understanding of what they can do and what the risks are. That way, I’ll have all the information and I think I’ll start to feel a lot better about my current health situation.

Thank you @natsufatsu. It is a difficult decision to make and it’s good to hear from you and get others opinions on these things. For now, I have decided I’m going to opt for trialling at least the vedolizumab before making any more permanent decisions. I spoke to my sister, @sillyriceball, about it as well and she has been very helpful for bouncing ideas off of too. She agrees I should try at least this one last drug. I don’t want to skip it in case it does work, and even if it only gives me a few months relief, I think it’s worth it. I’ve been a bit depressed about being in hospital again and just want things to go back to some level of normal.

Feeling conflicted…

So, I asked my primary care doctor this morning what the actual plan was because it seems to me that my signs of improvement are purely because of the IVsteroids I’m currently on. I know from experience that every time I go onto them, I improve, taper the dose and finish the course, only to relapse and end up back in hospital a month or so later. He said this is possible and that they want to either continue me on the humira or switch me to vedolizumab. But before they can do any of that, they need to get me clear of the c. diff infection.

What I’m conflicted about is every trial I’ve gone on – infliximab, humira – hasn’t really worked and I’ve ended up relapsing. So, do I go with the trials or do I just request the surgical route? I’m really unsure and I’m frightened of what will happen in the next few months; I don’t want to end up in hospital yet again only for surgery to be my only option.

gentle reminder

gentle-reminder:

no matter what you are going through right now, you are strong enough to endure it; there might be a struggle, you might feel alone or like everything isn’t real around you, but please, please do not give up – say it with me ‘i will not give up’: that’s your gentle reminder for yourself, hold onto it, and try your best to never forget it

“I will not give up. I will not give up. I will not give up!”

12:30am

I’m now on the last two hours of my second ten hour saline drip of the day (the first one was overnight last night and ended pretty early). I’m torn between trying to sleep throug it and just staying up because the pump will wake me up either way when it ends. I’m not overly sleepy so maybe I’ll just play some games on my tablet and if I dose off, it doesn’t really matter.

Tuesday update

I’ve just spoken to the doctor again today; my xray came back ok – no toxic megacolon. Also, the surgical team are still going to come talk to me but it won’t be for a day or two, I imagine.

The steroids seem to be working as well (much better than last time) so my inflammatory markers are lower and my appetite is coming back so I’m hopefully putting on a bit more weight. I’m also hoping that this means to c. diff infection is on its way out as my BM have slowed a little since starting the steroids.