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…

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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.

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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”