Tag: ulcerative colitis

I went back to work today after a (somewhat) relaxing week off and I think I was mostly ok, but now I’m feeling terrible again; I’m rushing to the bathroom, having cramps and pains in my stomach and side, and I’m starting to feel really tired already. On top of that, my prescription isn’t at the pharmacy yet even though the doctors said it went on Monday so now I’m out of mercaptapurine. I know I’ll be ok without it for a couple of days (maybe) but I could really do with not missing too many doses. The hospital also want to do yet another flexi this week but they haven’t told me when yet. I’m not looking forward to it but if it means they can finally do something to stop this flare, then fine. I do not want Christmas to be ruined because of my stupid gut.

I spoke to my IBD nurse during my infusion and they’re going to change my infusions from influxamab to vedolizumab. She’s also going to arrange for a surgeon to talk to me about my options if the new infusion doesn’t work.

I’ve had such a good weekend

I slept in on Saturday (which I never do because I normally work on Saturdays) then went to meet my sister and her fiance (who are staying with us for a few days) at the train station, saw friends I haven’t seen in months for an early Christmas party and exchanged presents, and today (Sunday) me, my sister and her fiance went to a tudor museum which I haven’t been to since I was in school! We had Costa Christmas drinks too in the afternoon and then a big roast dinner with my fiance in the evening. Even though I am entirely out of spoons and in a bit of pain from eating too much/things I probably shouldn’t have, I had a really good two days. I hope tomorrow goes just as well; I’ve got my infusion in the morning but the afternoon is free so I want to spend more time with my sister before I go back to work on Tuesday.

I spoke to my IBD nurse yesterday and she said to try a mild laxative like milk of magnesia. I gave it a go last night and it seems to do the trick but it’s too early to tell if it’s helped with the pain in my side. The nurse has also said someone will come talk to me on Monday when I have my next infusion. I’m apparently on the highest meds they can give me so they probably can’t do anything else except maybe change the frequency of my infusions. I guess I’ll find out Monday.

I’ve had a very lazy day today. I didn’t sleep in as late as I usually do on my days off but I have been doing very little. I’ve eaten a few bits that aren’t especially flare-safe but most of my food today has been safe (cereal, scrambled egg ect.) Unfortunately, the pain in my left side has increased over the last couple of days to the point I’m taking Zapain. I don’t normally need such a strong (for me) painkiller. I’m going to call the helpline tomorrow; I think this classes as becoming worse.

In entirely unrelated news, we’re making huge progress with our rats; we’ve managed to pick them both up and hold them (re: allowed them to run around our shoulders) outside the cage. This makes me very happy.