***********WARNING THIS BLOG CONTAINS A LOT OF CRAP *************
Today is World IBD Day, part of Crohns & Colitis Awareness Month. For me it is a day of celebration – because, although, my IBD doesn’t define me – it has made me who I am.
I was diagnosed with Ulcerative Colitis back in 2006, after what I thought was an ongoing stomach bug I’d caught in Bulgaria. Everyone on my mothers side, inc my brother, suffer from IBS but I’d never had any problems. Suddenly in Bulgaria, whilst laying on the beach, I became aware that my Bikini Bottoms were filling with something unpleasant. I had to waddle back to hotel with a beach towel wrapped round me. Little did I know this would be the first of uncontrolled mucus messes I would get into.
Back home my stomach didn’t settle, I was back and forth to the family GP whose answer never changed from ‘It’s IBS nothing to worry about’ and ‘your too young for it to be anything serious’. Then I started passing clots that looked little baby mice. I knew I had to get the doctor to take notice so I got an emergency appointment the next morning and took him a lovely sample in a Chinese Takeaway Carton.
Sit up he did and then he went so pale I thought he may faint. Immediately there was hurried discussions of urgent tests and specialist appointments. I am very, very fortunate in that I get private health insurance through work – so it was less than a week of sleepless nights before I saw Mr Strauss – who would become my super hero and life saver.
I can’t remember if Mr Strauss said straight away that it was UC or whether he waited until all the tests were back but the relief of having a diagnoses was amazing. Not more so than because I was due to get married in a couple of months and despite always being skinny I was beyond ridiculous.
This is me on our Honeymoon – I’d managed to get up to a UK size 6
I was started on Asacol 3 times a day and I’ll be honest, except for the odd flare up that required a 2 week dose of steroids, the next 5 years were pretty much plain sailing.
In 2008 I fell pregnant with my son, Callum, and throughout the pregnancy my UC was monitored but remained well behaved. Sadly that was short lived and when Callum was 6 months old, I was rushed into Edinburgh Royal Infirmary – not more than 2 hours after landing in Scotland for Valentines Weekend. My UC had gone into overload, and I had to be kept in on a steroid drip for 2 weeks.
After this we never managed to get control of the UC again, I was under two specialists now – Mr Strauss Consultant Surgeon and Mr Melia Consultant Gastroentrologist. Every medication and treatment available at the time was tried and failed me. I was on the highest dose of Steroids for 9 months. I couldn’t work and was barely able to look after myself let alone my baby. In the end we had to move in with my parents because I could no longer lift Callum or even cuddle him.
The suggestion had been made about Surgery but because of my age it was to be thought as a last resort. After 9 months I was more than aware I was no longer living I was just surviving. Not only was my health taking its toll one me but the fact I couldn’t even comfort my own child was getting me down further.
I took the decision to have the ileostomy with the view to reverse it, if I wanted. People often ask if it was a hard decision but for me it was a bag or my life.
Again I was lucky that I had Private Healthcare because it all happened very quickly, I chose though to have the Op done in the local NHS hospital because it meant that money would be going back into the hospital – for those not as lucky as me.
By this point I had become massive, from the steroids, I refused to buy clothes in a (MUCH) bigger size so had been wearing my maternity clothes again. My husband just looked a picture of me in hospital and asked who it was. I would end up going back into the same hospital 3 months later and none of the staff recognised me because I had lost all of my steroid weight.