I’ve just had the doctor come round and they’ve decided to put me onto humira, starting with four injections today. They’re also going to change the steroids I’m currently on – which I hope is only whilst I’m in here and won’t be yet another eight week course. Provided it all works, I should be home by Wednesday.
Feeling a bit down… sorry
Been in the hospital for almost a week now and, I’ve got to be honest, I don’t feel much better. I’m eating more, at least, but that’s down to the steroids boosting my appetite. Nothing else is working and I’m feeling so tired all the time. All I want right now is to feel better so I can go home and sleep in my own bed. Sorry for the early morning sad feels but I just needed an outlet for how I’m feeling at the moment.
Feeling pretty fragile this evening; they forgot to prescribe me my lunchtime meds so I ended up not taking them (even after I mentioned I needed to take them) and now I feel bloated and uncomfortable. I’ve told the nurse so hopefully they give me something to help, and with a bit of luck, I might get some more sleep tonight too.
So, every day this week the nurses have turned the lights out and pulled the curtains for an hour or so in the afternoon for a “quiet hour” so patients can rest. Usually during this time, I stay on my tablet. Maybe listen to a podcast or two (Welcome to Nightvale being the current favourite). Today, they didn’t do this. And I feel I could have done with an hour or so nap. Ah well, hopefully it means I’ll sleep better tonight.
I got a visit from my aunt early today too, which was nice. Looking forward to seeing my parents this evening, and my fiance said he’d be round tomorrow afternoon. Mostly though, I’m looking forward to going home but I don’t think that’ll be anytime soon.
Sunday morning
I think I slept a little better last – in that I didn’t wake up to the lady next to me trying to get out of bed and go home at three in the morning.
I’m still experiencing some discomfort from my flexi yesterday morning so the nurse recommended I go for a wonder to try and shift some of the gas still trapped in my gut. It’s a shame because it’s wet and cold out today where as yesterday (when I was too tired to leave the ward) was nice and sunny.
Speaking of the flexi, I spoke to the out-of-hours doctor last night and results are back saying nothing abnormal (for me) so the usual inflammation is present but nothing dangerous. They have to wait until tomorrow though to get any decisions made on my treatment so it’ll probably be a quiet day today.
My aunt might come to visit later, and my parents will too, which’ll be nice because I don’t get to see her often. Other than that, today will likely be filled with me playing mahjong on my tablet. It keeps me somewhat mentally active and gives me a great distraction from everything.
Warning! Slightly graphic post ahead!
Flexi all done (at last). The prep was just a standard enema but it was so painful! I had to have a nurse assist me. Then I was in a lot of pain for about an hour where I wanted to go to the bathroom but there wasn’t anything to pass so I just had to wait for the sensation to go. The flexi itself was also quite painful but the sedative took the edge off, at least. The nurse even offered me his hand to squeeze.
I’m feeling pretty bloated from the gas they pumped into me so I’m still hurting but nowhere near as badly as I was before.
The plan now is to rest before lunch, eat as much lunch as I can (only ordered a small omlette and jelly for after), then to rest for the afternoon before my parents come to visit me.
Sorry if anyone found this a bit of an overshare but I feel sometimes you can’t always hide the “gross” side of having IBD.
I hope you are all having a relaxed and spoon-filled day.
Saturday morning update
Flexi day today. They haven’t said when exactly but it should be over by one this afternoon. Shame I won’t know what’s what until Monday though; the ward doctors are few and far between on weekends. I suppose if there is anything they think I need to be told/needs doing and can’t wait until Monday, they’ll tell me.
[drawing of a green elephant saying “It’s okay if today is not a good day for you. It will be over soon and you’ll have plenty of good days again.” in a green speech bubble.]
Still waiting to see a doctor but one of the IBD nurses has just been round and they’ve got a flexi booked for me for tomorrow. She said she’ll come round on Monday afternoon to go over the results and then, I guess, we’ll go from there.
The steroids aren’t doing a whole lot so I may be in here a while longer if they can’t find a solution soon.
What Can I Eat 