My Experience with Ulcerative Colitis – the good, the bad and the messy
I feel like I’m getting worse. I’m still on the prednisolone (25mg daily) and I’ve got my humira on Monday, but it feels like things aren’t getting any better. I’m trying to be as positive as I can to avoid stress, as that seems to be one of my main triggers, and I’m sticking to the low fibre diet as much as I can, but the last few days have been pretty bad. I’m conflicted about calling the helpline because I’m scared of what they might say. Plus, it seems pointless because I’ve got an appointment with my GI on 13th and the nurse may just say wait until then. I also don’t want them to suggest I come in for a flexi then decide I need to stay in the hospital again. I can’t be dealing with yet another hospital stay! I’m trying not to stress about it but I just feel like nothing is working and that surgery may be my only option now.
Sorry for ranting but I just needed to get this stuff off my chest.
I took my last two loading shots of humira last night and it all went fine. I’ll probably get a call to arrange for a nurse to come round and help me later but I’ll just explain that I can do it on my own.
My fiance said it sounded like I’d been shot because of the loud click the pens make when used. The first one wasn’t painful but I felt the needle go in. The second one I didn’t feel at all though so I’m feeling pretty happy about taking them without any issues.
The only thing I struggle with is keeping hold of the pinch of skin as I wait for the yellow bit to appear in the window to show it’s done. I’m sure I’ll get better at it though the more I do it.
I’ve had a productive day today; got my humira delivered this morning (no one’s arranged to come round to help me take it but I’m feeling pretty ok to take it on my own because I did three in the hospital, so I’ll be taking the next two doses tonight), I cleaned out the rats, went out and got a few cooking supplies, and then made gluten-free toffee cupcakes and chocolate brownies.
I’m feeling a lot better today but I’m a little tired now. Looking forward to seeing a friend (who I don’t get to see very often) tomorrow.
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.
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.
They’ve over-done it a bit though as I know have enough mercaptopurine and mesalasine to last me several months! I’ve got nine weeks of prednisolone (the extra week of 40mg daily was mostly given whilst in hospital, so only eight weeks left). I’m taking Adcal-D3, co-trimoxazole and colicalciferal for the duration of the steroid course, and the next humira doses are in just over a week. Then it’s once every two weeks.
They also gave me some fortisip drinks, like last time, to help get my nutrition intake whilst I recover.
I’m exhausted from going through everything but I’ll admit I’d be totally lost if I didn’t have Medisafe on my phone. For those who don’t know, it’s an app that allows you to list all your medications, when and how many you have to take, and it’ll remind you to take them at the right times. You can “take”, “skip”, or “reschedule” meds which is so much easier than setting alarms all over the place. It can be a tad glitch-y but it’s been mostly fine for me. I’m sure there are other medication apps out there but this is the one I found works for me. Does anyone else you an app like this to keep track of their meds?