So why did someone diagnosed with Crohns (later diagnosed as Indeterminate Colitis), who was always told, was NOT a candidate for surgery, end up with having the complete Colon and Rectum removed and now lives with a permanent Ileostomy Stoma?
In 2004, whilst in the first trimester of pregnancy with my first son (now 16 years old) after falling extremely ill, I was diagnosed with what was thought to be Crohns Disease. I had had numerous ‘IBS’ and other labels placed on me prior and was known as a hypochondriac to many as often ill for no apparent reason! But there it was, I was a sufferer of IBD.
I managed the disease between several hospital admissions, ASA drug therapies, Immune suppressants, Biologics, diets, investigations, and other remedies available for 10 years. I had fertility treatment in 2007 which was successful, and I was lucky enough to have a second son (now aged 13). I was ill throughout both pregnancies but thankfully they were both perfect.
In 2012 I qualified as a Zumba Fitness Instructor and was also working 20 hours a week as a Teaching Assistant in a Primary School. All was going fantastically…
In 2014 it all took a turn for the worse! I started suffering regular flare ups to the extent I never again entered actual remission. I had to retire from teaching Zumba as I was too unwell.
The flare up that followed left me hospitalised for 10 days and on Steroids and again on Infliximab (biologic treatment). It was only 9 days later that I met Stuart, my rock!
On the 24th of July 2014 I started suffering the effects of drug induced Lupus from the Infliximab, I was switched to Humira (Adalimumab) in Oct 2014 .
2015 was a better year! I climbed mountains, literally! dived, bodyboarded, and lived life to the full, until August when I was away in Cornwall and I started displaying signs of a flare up yet again! I started steroids, suppositories, antibiotics and anything to help until again in Sept 2015 I was admitted back to Brighton Hospital for IV steroids!
The side effects of which are obnoxious to say the least. I again recovered and after 13 weeks, after a nasty bout of Shingles, I was well enough to return to work.
In 2016 I went downhill fast, I still worked although I struggled to keep up, I was back on steroids, enemas, etc and my Calprotectin levels were back up over 600. I went off ill from work mid-January 2016 and didn’t in fact return until July!
I was sent for MRI scans and various tests and after exhausting all options in Feb it was decided the Humira was not effective any more and I was not responding so back in I went to Brighton Hospital. They started to suspect it was more Colitis and Proctitis than Crohns due to its behaviour, and after 7 agonising days of going to the loo over 25/30 times a day and several at night still, they approached me regarding surgery!