My Experience with Ulcerative Colitis – the good, the bad and the messy
Tag: ulcerative colitis
Gluten-free bread and butter pudding with chocolate chips and glace cherries (instead of raisin) with double cream and a light sprinkle of cinnamon on top. Makes for a very tasty snack.
It’s about a week late but I’m finally getting my humira delivery on Monday morning! I got a call from the healthcare company this afternoon; they said a nurse should be in contact to arrange to come round to ensure I administer the doses correctly on Monday, but after that, I should then receive humira every four weeks and be able to give myself the injections no problem. This has made my day.
So, still no sign of my humira. I’ve spoken to the hospital and been bounced around from place to place but no one seems to know anything, so I’ve left a message with the homecare department in hopes they’ll call me back with some news.
Otherwise, I think I’m feeling better. BM have slowed but still aren’t “normal”. I’m able to get near my recommended daily calories but I’m finding it hard with just food so I’m taking fortisip drinks in the morning. My weight is staying put (just under the minimum weight recommend for my height/gender), so I’m not putting anything on but I’m losing anymore either.
I think my insomnia is slowly going too; I woke up around two this morning but didn’t take hours to get back to sleep again so I actually slept for a lot longer than I have been. I hope this continues.
I’m also now working for the rest of the week (although, only short shifts) so I’ll be kept busy. I’m hoping it’ll help take my mind off my flare and just get me back into a normal working routine. There has been talk of possibly cutting some of my hours, which I would rather not do, but we’ll see.
When you spend 20 mins on the toilet but nothing happens so you go back to bed only to return seconds later because now you need to poop!
Despite the mix up with/lack of humira today, I had a good Valentine’s day. My wonderful fiance took me out to TGIFriday’s for dinner and I was able to not only eat all my main meal, but also a strawberry sundae after. Feeling quite full but not bloated. All in all, a good day.
So, the delivery company have messed up; The hospital arranged for my humira to be delivered weeks ago but the only company in the UK that deals with delivering medication to patient’s homes has messed up somehow (They don’t even have me on their system!). I am now having to wait to see when the hospital can arrange for me to go in as an outpatient to have my next two loading doses at the hospital rather than at home. Very frustrated but at least I know what’s happened and don’t feel like I’ve been forgotten.
So, I called the hospital to find out if there was a specific time my humira is meant to be delivered today. They said I should have been contacted by the health care company that deals with the deliveries of medication like humira but when I said I haven’t received any paperwork or phone calls, they said they’d look into it for me. I’m a little concerned that someone’s messed up and I won’t get my injections today. This wouldn’t be a problem if I wasn’t going to be at work for the rest of the week. Now, I’m just waiting for a call from either the hospital or the delivery company. I’m trying to stay positive; I don’t need another anxiety attack.
I have my next humira doses tomorrow but I have no idea when the nurse is meant to come round. I’m guessing they’ll arrive anytime after 8am but I really have no idea. I’m getting up early anyway, just in case, so I really hope I get a decent amount of sleep tonight.
I have no concept of the pain scale, like…I just realized that last week I said I was in especially awful hip pain and when my pt asked to rate it I said “3”. And then this week I said I felt a lot better than last week and when she asked me to rate it I said “3”. I really don’t know what the numbers are supposed to be. I know it’s supposed to be out of ten but like. I think I rate the pain by what time of the day it is. Like “i will rate the pain I’m in at a 5 at the end of the day, so compared to what my pain level will be later, what I’m feeling right now is a 3.” I also think i rate in overall pain rather than specific pain? Like, systemically I’m at a five. Some parts will be worse or better but i just rate it all at five because that’s the average
Please show this to children. I could have used this when I was in the hospital with mastoiditis.
Like your asking a child to tell you what level of pain they are in?? All I know if I want to scream and go to sleep
My life exists on the border between 5 and 6. Sometimes it’s worse, but rarely ever better than a 5. A 4 is a good day.
I always thought the “rate your pain” thing was a bit pointless because my 5 could be someone else’s 7, but seeing it explained like this has made it a lot clearer. Thankfully, my doctors don’t ask me to rate my pain; instead they test how tender my stomach is by pushing on it gently and seeing how I react (ie. If I winced or say it hurt ect.).
What Can I Eat 