What’s In My Bag (Crohn’s Edition)

What's in my bag - the Crohnie version. When you have Crohn's Disease, the contents of your bag or purse might be slightly different from all of the other glam "what's in my bag" posts - take a look at what I keep in mine!

I’m sooooo nosey…I’m that person who has a sneaky peak in your fridge, a poke around your medicine cabinet…I do draw the line at having a good old root around your handbag though which is why I love all the “what’s in my bag” posts out there.  Most of them are waaaaay more glam than mine but when you have Crohn’s Disease, the contents of your bag is likely to be a little different than the norm…

First of all, my bag – the bigger the better, the easier to look after the better (i.e. can I just bung it in the washing machine when it’s getting a little grubby) and I need to be able to sling it over my shoulder, none of this perching my bag in the crook of my arm nonsense.

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Happy #humiraday – the Last One!

This is my last dose of Humira! Last one! An end of Humira (end of an era…get it? *sigh*)…My bi-weekly injections stopped working their magic probably over a year ago. Although I could get approval for funding for weekly injections for 3 months at a time, for whatever reason a year of this funding was rejected a first, second, third, fourth time….

It’s ridiculous because it WORKS! The final time my gastro doc put in a request for funding he very clearly stated to whoever approves it that if it got rejected he would be applying for me to start Entyvio which is actually more expensive! His words in the letter – “if this is refused then the next line would be Vedolizumab which is more expensive which sounds counterintuitive”. YES! Go doctor!!!!

Anyway, it got rejected and I’m now 2 infusions in on Entyvio but have one Humira injection left. I’d normally post about what had happened since the last injection 2 weeks ago (the good AND the bad) but feel it’s only right to think back to some of the wonderful happy things that have happened since I first started using Humira back in March of 2014… Continue reading “Happy #humiraday – the Last One!”

Living with Someone with Crohn’s (Guest Post!)

Living with Crohn’s Disease can really be tough at times.  Sometimes I forget that I’m not the only one living with this illness…yes, I’m the one with the disease but someone else has to also live with the hospital appointments, the medications, the restless nights, the moon face, the constant toilet trips – Mr Crohn’s.  

I was diagnosed after we’d been together for some years so he’s had to come to terms with it as much as I have but sometimes I forget about this.  I forget how he must feel when he sees me in the middle of a flare up.  I forget how frustrating it must be to have someone constantly dozing off or needing to run to the loo in the middle of films.  I forget that hospital appointments are perhaps as stressful for him to see me go to as they are for me to actually be there.

I asked Mr Crohn’s a while ago if he fancied writing a little something about what it’s like living with a Crohnie and it had skipped my mind until I saw him typing furiously last night.  He emailed me a copy, I went to another room to read it and I bawled my eyes out several times.  I’m talking about a third of a loo roll used for eye wiping/nose blowing.

I really couldn’t ask for more from this man.  He’s my fiancé, my best friend, my personal comedian, my rock, my love, my everything.  The times I do think about how tough it is for him as well I wonder how the hell he deals with me.  He’s nothing but patient, understanding and caring and somehow always knows exactly how to cheer me up whether it’s with a silly dad joke, a cuddle or just the amazing superpower of being able to pick exactly what film I need to watch to lift my spirits.  

I really don’t think I could have done a lot of this Crohn’s thing without him and think it’s really important to share what it’s like living with someone with Crohn’s Disease from his perspective. I’ve waffled on enough now so want to hand you over to him…

Continue reading “Living with Someone with Crohn’s (Guest Post!)”

Happy #humiraday #5

A new roundup with what has been happening since my last humira shot. The good, the bad, fun stuff and things I've learnt - I try to spend time every time I take my injection to look back on what has happened.

I started my #humiraday posts because I found it a good way to look back over the last couple of weeks and have a think about what I’d been up to, how I’d been feeling…I’m actually getting very close to the end of my own #humiraday because it stopped working so well for me and funding didn’t allow an increased dose (i.e. weekly shots).

This is my second to last Humira injection and I’ll post again for my final shot but need to think of ways I can keep a weekly/bi-weely roundup as it wouldn’t be a proper diary without some form of regular posts, right?!  Until then, here’s what’s been going on since my last injection… Continue reading “Happy #humiraday #5”

Entyvio – My First Infusion

Entyvio (vedolizumab) - what is it like? This post is about my first experience with an infusion - answering questions about what to expect, what happens, side effect and how I felt after the treatment.

Yesterday was my first Entyvio (aka vedolizumab) infusion and before I went, I had questions galore.  Once I had the go-ahead for the treatment, the doctor didn’t give me any information about the whole process or what to expect (they’re usually pretty good so don’t know why they didn’t think to give me any info ahead of it!).  There’s a LOT of technical information out there on the WWW, but I couldn’t really find much about what it was actually like – what happens when you go for your infusion, how you feel afterwards, etc. so I made a list f everything I wanted to know, put it out to the Crohnie community on Instagram and was blown away by not only all of the answers but messages, love and support from everyone!

Thanks to Instagram, I had answers for everything I was curious about from people who have already been taking Entyvio but then I though “hey!  Now that I’ve had my first treatment, why not answer my own questions?!” (and maybe add a few bits about how the treatment went that maybe I didn’t think about asking before).

Here we go!

10:30 am, I checked in at the Ambulatory Emergency Care desk of my local hospital.  It was pretty packed as they seem to share a waiting room with the blood test waiting room.

Continue reading “Entyvio – My First Infusion”