Initially, it was a lot to comprehend - especially my early retirement - but with the immediate and ongoing support of family, friends, and Crohn's & Colitis Ireland my mental and physical health are in much better shape.
Up to 9th August 2012 I had no health issues or any indication of what was about to transpire. My daily commute was routine and I spent all that morning at meetings. After lunch I went for my daily walk, but had to cut it short as I began to feel unwell. I returned to my desk but had to dash back to the toilet feeling very ill.
By this time, everyone had left to see the Katie Taylor fight for Olympic gold, so I decided to head for home. However, I was struggling to stay compos mentis. I struggled while driving but managed to get home safely.
When I got home, I was still very unwell and was found unconscious by my wife and daughter. An ambulance arrived within minutes and I was brought to Beaumont hospital where I spent the night in A & E.
I was discharged early next morning having been diagnosed with gastroenteritis and given Buscopan. However, over the weekend I could not eat, or drink and my stomach had distended to an alarming size. I was readmitted to hospital and sent for numerous tests, bloods and Xray. I was told that I had a life- threatening situation as they discovered a blockage in my intestine which could burst at any moment and so I was placed on the emergency surgery list.
I was hooked up to IV Steroids, Saline drip, a bag fitted to a tube inserted into my nose, a catheter and was fed intravenously for almost my entire two weeks stay. Days passed and eventually I was told that (at the age of 61) Crohn’s Disease had been diagnosed. Thankfully I did not require surgery but was told that I had had a very narrow and lucky escape and that future surgery could be required. Little did I realise at that time that this was a life changing event, which led to my employer of 38+ years retiring me on the grounds of ill-health and so the roller coaster of living with Crohn’s began.
Shortly after being discharged, I had a lumbar puncture. My medication was subsequently changed to Infliximab infusions, but twelve months later I became intolerant to the infusions and my medication was changed to Humira (now Imraldi).
A few years later, I had two major flare ups in quick succession which required hospitalisation on both occasions. I also suffered a DVT which required another stay in hospital. During the various hospital stays and plethora of tests further health issues were discovered including Lupus. At my age I suppose that it’s to be expected that other health issues would emerge, and my gastroenterologist says that my “constellation” of health conditions makes it difficult to treat and further complicated by the fact that I have only one functioning kidney. So fair play to the several health care providers on dealing with my many health issues and ongoing monitoring of my conditions.
Living with Crohn’s and my constellation of conditions is an ongoing challenge that requires restricted diets, travel restrictions, and cancellation of a holiday of a lifetime which resulted in financial loss because of insufficient holiday insurance.
Notwithstanding all this, I am in a good space now and I enjoy my daily walks, always conscious of the proximity of the nearest toilet. Initially, it was a lot to comprehend - especially my early retirement - but with the immediate and ongoing support of family, friends, and Crohn's & Colitis Ireland my mental and physical health are in much better shape.
What would I like to have been told when I was diagnosed?
Once the initial crisis was under control, I could lead a normal life provided I followed medical advice and it would be a matter of trial and error regarding diet and medication. However, I could expect some flares during my journey with my atypical Crohn’s condition.
What works well for me?
Openness with family, friends, and colleagues and with the passage of time developed a positive mental attitude dealing with Crohn’s and my constellation of conditions. This has allowed me to lead a relatively normal life and even during Covid, get out to do my minimum of 10,000 steps per day.