Tag: ibd

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.

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.

Another check-in

The doctor has just been round. He want to do a few more blood tests and stop the colesevelam for now because it’s not really doing much for me. He also spoke about my infusions again so the possibility of them changing it is looking more likely. They might want to do a flexi tomorrow but it’s otherwise steroids for today.

Day three

In a new ward, with new ward-mates (most of whom were moved in during the early hours of this morning, like me) and a team of lovely nurses. I’m not sure if I’ll see a doctor today (doubtful as he only came round to me yesterday) but at least I’ll have time to dose and catch up on some sleep if they just leave me alone today. I was going to try and move around a bit more this time because staying in a bed for days on end makes my legs very stiff when I get out but that might have to wait until tomorrow; I’m badly lacking in spoons today.