Good week so far

So work wasn’t too bad this week so far; I found that applying heat to my cramping stomach helps it relax and, therefore, stop hurting. My manager, who gets cold very easily, uses adhesive heat pads on her stomach so she gave me one which meant I felt perfectly fine all day yesterday. I’m getting myself some heat pads as they will be great for the winter as well as my stomach cramps.
My upped dose of mercaptapurine seems to be working somewhat, and the colesevelam seems to be doing its job as well. I’m not entirely out of the woods but I do feel a little better in myself. Oh, and I finally got my cholecalciferol which I started yesterday so fingers crossed my hair will stop falling out and I won’t feel as tired anymore.
I’m off work today so I’m spending it with my sister and her fiance and we’re going to go bowling this afternoon. This evening we’re going out for a meal because it’s my mums birthday today. She’s unfortunately working all day but I’ll see her at the meal to give her her present. We’re going to TGIFridays; they’ve got a good gluten free menu and decent portions too. Here’s hoping it all goes well.

I hope everyone had a good holiday. I was in quite a bit of pain – and still am – but the hot water bottle I got from my aunt has been put to good use over the pass two days. It seems to help at least a little with my cramps, and it does feel as though the colesevelam is working too. It’s either that or the upped does of mercaptapurine. Something seems to be working at least as I didn’t need the bathroom once last night.
I just hope I can sleep well again tonight so work isn’t too painful tomorrow.

Merry Christmas

I’ve been pretty self-destructive today by eating things I shouldn’t have. I’m hurting quite a bit right now so I guess I’m paying for it. Pain killers are next on my list.

I won’t be online for a couple of days but I hope everyone has a spoon-filled Christmas/Winter holiday.

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.

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.