Flexi over but…

They didn’t find any reason for my flare symptoms during my flexi, only that my inflammatory markers were up. They did an x-ray on my stomach which came back clear, so they have increased my mercaptopurine from 25mg to 50mg daily. I’m also starting a month trial of colesevelam hydrochloride tomorrow (which, apparently, is something to do with salt malabsorption?). They have decided not to change my infusion (yet) so I’ll be staying on the infliximab for the time being. Oh, and I’ll be taking cholecalciferol for the foreseeable future to get my vitamin D levels back up.

Although I’ll be rattling with all the tablets I’ll be taking, I will be home for Christmas and, with a bit of luck, be feeling a little better from the extra meds to be able to eat dinner without an immediate dash to the bathroom afterwards.

Waiting to go in for my flexi

I’m a little nervous but also a little numb. I think it’s because I know what’s coming and there’s no point in getting upset about it. I still feel nervous though.

Yet another flexi tomorrow

I hope it goes well. I’m having the sedative again, like last time. Fingers crossed it doesn’t end with another hospital stay.

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Not IBD-related, but it made me smile through the pain.

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.

Infusion day!

I hope it helps me feel better before Christmas.

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 made gluten-free brownies again today! I’ve put some aside for my work colleagues as a thank you for being so good about me being ill a lot this year.

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.