Saturday 5 April 2014

Me and My Crohn's

I want to take a quick minute away from my normal foodie post to talk about Crohn's...

Have you ever heard about it?  Do you know what it is?  I had no clue until...

On the 20th October 2012 we moved into our new house.  We had a number of lovely friends help us with the move and as "payment" we went to the pub.  Following the pub Mr Jones and I got a kebab each which we ate in our practically empty flat.  The following morning...I didn't feel good...I thought at first it was because I drank quite a bit of cider.  The day after I still had stomach issues.  

After a few months of not feeling right I went to the doctor.  He thought it might be a stomach bug or potentially IBS so tried to treat the stomach bug first (he actually suggested, off the record, Coke because apparently it kills stomach bugs!).  

Fast forward to 24th August 2013 - after all sorts of tests I was properly diagnosed with Crohn's after many, many tests.  Basically my immune system thought it would be fun to attack itself causing inflammation and fistulas which then lead to pain, frequent trips to the toilet, tiredness, bloating - all manner of not fun things!

After getting to the age of 34 without any major issues (and a healthy stomach) being told that I have a disease that will be with me forever and has no cure shocked me a little bit to say the least.

I was already on steroids (Budesonide, 9mg) and the first port call for medication was Azapriothine (Aza).  I started taking it on top of the steroids and didn't really notice much difference.

A couple of months later I got severe pains across my stomach, went to urgent care and was advised to stop taking Aza immediately as it seemed as though I had pancreatitis.

With Aza being a no-go there were a few options:

  • One was similar to Aza so wasn't an option as I would probably have the same side effects.
  • One was so strong that should I get pregnant while taking it I would have to have a termination.
  • The last (and only for me) option was Humira.  

When I was told that Humira was an injection it really hit home that I have a proper medical condition.  Most people take pills on a daily basis in the form of vitamins, pain killers, have a medication that needed a special delivery, constant refrigeration and cost an arm and a leg was a little scary to be honest!

My first shots of Humira (24th March so pretty recently!) were a super dose - 4 injection pens.  I had a nurse with me for my first injections.  It was scary but once I'd done the first injection the other three we renothing and today I had my second dose of 2 pens.  All you really do is just press a button and the pen does it all for you!  Going forward, as long as my blood tests show improvements and I get funding I should just have 1 pen every two weeks.

Crohn's can be caused by so many things.  It can be partially genetic but can also be your immune system being disrupted so your body sends out a protein that kills all bacteria including the good friendly bacteria (thanks body!) or can be triggered by food poisoning.  Normally it's just a big mix of everything!

Doctors and researchers are working away to try to understand this and other IBDs better and I'm trying to do my bit - I signed up to take part in research to see why biologics like Humira work for some people and don't for others.  I have to add that the research is called "PANTS" (Personalised Anti-TNF Therapy in Crohn's Disease which doesn't quite match the PANTS acronym) so how could I not sign up for it?!


I think that it's not really that talked about because who likes talking about tummy troubles?

I've found that the internet hosts all kinds of support whether you are a Crohn's or IBS newbie or a long term fighter.

Here are some of my favourite places or people to talk about Crohn's with or read up on it:

@Crohns UC Top Tweets
@Crohn's & Colitis UK
#GetYourBellyOut - show support with a belly selfie and a hashtag!

The Crohn's Diaries
Colitis Ninja
Uncover Ostomy
Leaving the Seat Down
The Caged Bird Still Sings

Online Support
Crohn's Disease Forum

Crohn's and Colitis UK

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