I called the doctor yesterday to see if my results were back but, unfortunately, the test they requested is no longer a routine one so they haven’t even tested it yet! As for my blood test to see if it’s much vitamin D levels that are making my hair fall out, I have to phone the hospital for that because they haven’t sent them to my doctor yet. It’s been over a week.
I’m getting pretty fed up with this flare now; it’s not bad enough for them to do anything but every time I eat, it hurts so I’m trying not to eat much. Even vegetable soup which is usually fine for me is causing issues. I’m not really sure what to do. I can’t tell if I’m getting worse or if I’m just getting used to it.
It’s been three weeks since I finished my last course of prednisolone and two and a half weeks since I started showing symptoms again. I’ve been flaring fully for about a week and a half now and it doesn’t look like it’s going away on its own. The problem is, I’m starting to become used to it so my control over my diet is slipping which means I’ve been allowing myself to have things I know I really shouldn’t. It hasn’t made me any worse (yet), but I know it’s not going to help me feel any better. I don’t know if it’s worth me call the helpline again because they might just say what they did last time which was that they can’t do anything else until I get worse.
I feel a bit stuck in IBD limbo at the moment, and unsure of what to do. I suppose the best thing for me is to take control of my diet again and be stricter with myself. Make sure I stick to my safe foods, like soup and tea, and try to rest as much as I can, even if I am working.
I’m feeling a bit better this morning. I slept better last night and I seem to have gain a bit of my appetite back. The downside is that my symptoms haven’t gone anywhere and feel like they might be slowly getting worse. I’ve had to provid some samples for my doctors because they want to rule out infection before looking into what other meds they can give me.
I’m also back at work today which I’m hoping won’t be too painful; it’s really cold at work which doesn’t help when I’m flaring but my manager has been quite understanding so far.
Current flare foods include vegetable soup, gluten free porridge and homemade gluten free brownies. Oh, and tea.
Symptoms are slowly getting worse but at least my manager is understanding of my appointment tomorrow and shares my hatred of long tubes with cameras on the end.
Well, we’re officially in flare territory. I called my IBD helpline last night so I should get a call back today. I hope it’s just a simple matter of upping my dose of mercaptapurine.
So, I’m only taking 10mg of prednisolone now and I go down to 5mg next week before stopping entirely. I’m both happy and nervous about this; happy because yay, no more pred-face or weird hunger, but nervous because last time I came off them I ended up in hospital for a week. I know the mercaptopurine and the infliximab infusions are meant to essentially “take over” from the steroids once I come off them, but I can’t help but feel like they won’t be enough. I don’t want to go back on the prednisolone if I can help it but I don’t want to end up flaring again. I’m already getting a pain in my left side and when I need the bathroom, it’s kind of urgent. Also, my gut’s been quite sensitive to a lot of foods recently so I don’t really know what to do.