Happy #humiraday #4

Happy Easter!

Another two weeks have passed and now time for another Humira shot!  For me, the time it takes to get everything ready and *ping* that humira pen (not that long, to be honest…) is a good time to think about what’s been going on since the last shot…

The Good

  • Went on a Jack the Ripper walking tour with Mr Crohn’s and really enjoyed it! Thanks Prednisone for getting my symptoms under control enough to actually be able to have walked around the back streets of London without too much of a worry!
  • Started tapering off Prednisone!

Continue reading “Happy #humiraday #4”

Prednisone – 3 Weeks In

Current dosage – now down to 15mg a day and reducing by 5mg every 2 weeks.

Side effects – MOON FACE! Yep, it’s arrived.

On a positive note about moon face, the magician Dynamo posted a picture of his moon face which has been all over the internet and news sites. I’ve seen massive support on social media with people posting pics of their own moon face (which takes a lot of guts to do when you’re feeling crap about how you look!) but I’ve also have a lot of support from other people who don’t have an IBD who have said “hey! This guy has what you have!”. Continue reading “Prednisone – 3 Weeks In”

And Relax…Crohn’s & Colitis Colouring Book

Crohn's and Colitis adult colouring book

Over the past few years there’s been an explosion of adult colouring books, quite a few of which *may* found a way into my house…flowers, patterns, animals, you name it, there’s a colouring book out there for you and guess what?! There’s now one out there for us IBD fighters – Crohn’s and Colitis Color to Cope!

My quiet little corner where I love to colour - it's peaceful with good light so the perfect space for a little mindfulness!

Continue reading “And Relax…Crohn’s & Colitis Colouring Book”

Happy #HumiraDay #3

Yesterday was a bit of  a frustrating Humira day because I was supposed to take my dose last Friday…

My initial delivery from Healthcare at home was due when the weather was pretty grim so can understand why they postponed the delivery.  I rescheduled to a day last week when unfortunately I was running late to work due to my Crohn’s symptoms and wouldn’t have got to the office (where my delivery was scheduled) in time so asked for it to be booked for last Friday when I knew for sure I was working at home.  I didn’t get the normal text reminder so phoned on Friday and they had no record of it being scheduled for that day.  *sigh*. Anyhoot, it got scheduled AGAIN for yesterday and I finally got my Humira!

Anyone else have this much fun with Healthcare at Home? Continue reading “Happy #HumiraDay #3”

Thursday 22nd March

My first Entyvio infusion has been delayed again! Apparently they don’t have the drugs available for tomorrow.

I’ve rescheduled for the 6th of April as that’s the most realistic time when I can actually work from home and leave for the 2 hours they said it takes then go back home and make up the time for work. I am lucky that I’m able to work from home but it must be so frustrating for people who can’t when appointments like this just get rescheduled at the drop of a hat – I’m guessing they’d have to take more time off work which just isn’t possible for everyone!

Monday 19th March

I’m frustrated.

I was supposed to get my humira delivery on Friday but Healthcare at Home screwed up the delivery. I was supposed to take my shot on Friday but due to their fuck up I’m now having to wait until I get my next delivery to take my dose. I wouldn’t mind so much but when I phoned up today to make sure I was actually getting that delivery, they said nothing was scheduled. So delivery is scheduled again for Wednesday and I’ll be almost a week late for my shot.

I was also due to have my first Entyvio infusion on Thursday but it’s now been pushed back to Friday because they didn’t check that the pharmacist would be there on Thursday. Luckily I have Thursday and Friday booked off as holiday from work….

Entyvio, Here I Come!

I knew my gastro doc had applied for Vedolizumab after the application for weekly humira shots was declined (again!) but had no idea things would turn around quite so quickly!

This morning I had an email saying that I’d been approved for treatment and someone would in touch over the next couple of days to arrange the appointment. Wow! It was a bit of shock and hadn’t really got time to get my head around it to be honest! I’ve researched on the Entyvio website what to expect, what’s involved, any side effects, etc but really wasn’t expecting anything to be approved for at least a few weeks. Continue reading “Entyvio, Here I Come!”