I’ve got Crohns and I have been diagnosed since I was 21, now im 32, due to my many stays in the hospital I’ve decided to ad that time up and take it off my real age…tad dar I’m only 27 and that’s what im sticking with!!!
How it all started, probably the same as most IBDers many many visits to the Drs with little to no joy!!!! I was told I had an eating disorder?? I had to go to counselling for weeks then my mum started following me to the bathroom after I’d eaten. She was told by Drs I could be taking laxatives and that’s why I was shiting myself inside out… nope that’s the Crohns. I also was missing those girly monthly cycles… pregnant!! Nope Crohns… it even went as far as me having an operation on my nose because they though it was that which was making me sick??? I know what your thinking WTF yeah me to I still don’t get the correlation but who am I to argue im only the one on the operating table.
Anywho that past and a few years later I started getting worse I started to loose even more weight. It was that bad I couldn’t sit on a chair because the bones in my spine stuck out and it hurt like hell to sit down. One day I woke up tried to get out of bed and found myself pretty much bed bound, every single joint in my body felt like it had been smashed in with a bat needless to say I was a tad worried. I spoke to work who by this time where getting pretty pissed at my time off and they reminded me I had private health care. Within 3 days I was booked in for a 20 minute appointment however the Dr didn’t need that long. After a few questions and a short examination he told me and my dad that he suspected Crohns. I had a barium meal/follow through two days later and I finally had the diagnosis. To be fair them saying that I had crohns was neither a relief or disappointment cause I knew nothing of IBD I just wanted to feel less dead on my feet, to be able to walk and sit on a chair without it hurting…I needed to eat as my body had already started eating it’s muscle mass. I was not a pretty sight let me tell you. I was given the standard steroid massive dose which brought out my inner moon face and an unusual obsession with the fridge!! After an 8 week course I was finally given a medication to start. Over the years I’ve struggled with medications I’ve had anaphylactic shock off an iron infusion ive also had a massive allergic reaction to infliximab. This damaged my lungs and brought me out in puss like boils all over my body plus my hair fell out in patches… my god I was gorgeous!!! Im very sensitive to tablets and injections as my body rejects mosts medications.. oops!! Im not going to go into the ins and outs of every medication or every part of me with Crohns over the past 11 and a half years as its harsh and to be fair I bet you have all had similar stories. I also dont want anyone feeling sorry for me that’s not the kind of person I am. I take life head on and at full speed.
Well its nearly 12 years later and I’m finally seeing the light at the end of the tunnel.
Its took its toll though as unfortunately ive lost my job… quite a few inches of intestine, the use of my A hole and some so called mates. I’ve had 5 ops two ileostomy’s and every medication going on NHS but this shitty illness (quite literally) ain’t beating me!!!
I’m currently waiting for approval from my local council for a medication called Ustkeinumab. Its a medication that’s generally used for skin complains but there have been trials and it shows it can work on people with serve Crohns. YAY!!!!
I’M currently recovering from a resection and ileostomy surgery on the 20th march 2014 and im also working with a fab group of girls raising awareness for IBD with the campaign #GetYourBellyOut. In my next blog im going to go into this campaign more, talk about behind the scenes, how we work together and support each other (as we all suffer with IBD on a daily basis)
Check Out GetYourBellyOut on Facebook (They have a great support group) Twitter and why not donate? Text IBDA99 and your donation amount to 70070 lets find a cure for Crohns and Colitis