A question I ask myself often, but the answer is always the same!
To save my life!
'I AM REPUBLISHING THIS POST FOR WORLD IBD DAY TO GIVE HOPE TO OTHERS ND RAISE AWARENESS OF THIS LIFE CHANGING DISEASE!'
That is something I must remind myself of on a regular basis, that way I can keep fighting, keep smiling and live a full life. Not live with regrets, over bearing guilt or what ifs!
However, that said, I thought it may help others to understand and even deal with similar if I break it down in my terms, not fancy medical words and terms I don’t remember let alone comprehend!
So where did it all change for me? And why did someone diagnosed with Crohns, who was always told, was NOT a candidate for surgery, end up with having the Colon removed!?
I was very ill with what was then diagnosed as Crohns Disease on and off since the first trimester of being pregnant with my first son in 2004! 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 bouts of illness and years of remission between. In 2012 I qualified as a Zumba Fitness Instructor and ran 3 evening classes a week as part of a Zumba Duo, I was also working 20 hours a week as a Teaching Assistant in a Primary School.
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 and the physical side as well as the stress and pressure of running a small business, became to much. Sadly, my teaching partner at the time was not understanding or supportive and I had no choice but to quit.
In July 2014 I entered Brighton University Hospital where they carried out a colonoscopy, my consultant at the time, Dr Nick Parnell, was horrified by the extent of ulcers and inflammation in my Colon and rectum. It was the worse I had seen in myself yet and with a CRP of over 600, I need emergency help. I was admitted for 10 days and after a few moved to Haywards Heath, so I could be near my children!
At this time, I was a single mum of two boys 10 & 7. I was lucky enough to have a good relationship with my Mum and Ex Husband to arrange emergency care for them whilst I was away, although it broke my heart to leave them! I had no choice. I had 7 days of IV steroids and was started back on Infliximab! I had been on this biologic 7 years earlier but stopped to have my second child.
Finally, I was seemingly responding to the treatment and sent home, just 4 days later I was to attend my son’s sports day (this period that follows is also covered in my blog Raw!
The bad times).It was only 9 days later that I met Stuart, my rock! He has been there for me throughout my journey and without him I may not have survived! So, to him I owe as much thanks as I do my surgical and medical team!
On the 24th of July 2014 I started suffering the effects of drug induced Lupus from the Infliximab, Ill cover this separately however, it resulted in me switching to a new biologic at the time, Humeria 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 again. I muddled through until Dec 2015 when it started to all go downhill!
It was New Year 2016 and I was enjoying a wonderful family meal out in a Chinese restaurant when I started feeling unwell, I still don’t know if it was just bad timing or of the food triggered my stomach, but I think after all the last few years had thrown at me, my body just gave up!
I went down hill 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 Humeria was not effective any more and I was not responding so back in I went to Brighton Hospital.
This is the beginning of the end! I should also note that since this had all been going on over the last 6 months I had been fighting my landlord and council to resolve several issues in my accommodation, mainly damp. And was made homeless whilst I was ill. I was rehoused whilst I was in hospital in February 2016.
I was admitted to Brighton Hospital under the care of Dr England(consultant) and Dr Clark (surgeon). I was yet again put on IV steroids, the highest they could, again I was riddled with inflammation and Ulcers in my colon, rectum and possibly more but they couldn’t get the scope around further due to inflammation to see. They started to suspect it was more Colitis and Proctitis than Crohns due to it 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!
I remember the moment like it was yesterday! The consultant and surgeon came into my private room with several registrars in tow, the sat down and said its time to remove the problem! They were saying so much that I went into a blur! I felt sick, dizzy and could feel the tears flowing uncontrollably. They explained that nothing else was working and the colon was so diseased, and biologic's had failed, that my best option of a healthier future was to have my colon out and have a stoma bag!
They left me to take in what they wanted to do the next morning as an emergency procedu