World IBD Day - My Story

With today being World IBD Day I thought I would share with you my own experience. Some of you may know, some may not but I was diagnosed with Ulcerative Colitis when I was 17 years old. At the time I knew nothing about it, I had never even heard of it. I had spent every day leading up to my diagnosis feeling gradually worse up to the point where I had zero energy, everyday tasks became increasingly harder to the point where I would almost pass out if I did anything. Coupled with the fact that I had to go to the toilet every 30 mins I knew something was wrong.


After a trip to the doctors for a blood test, I received a phone call that evening informing me an ambulance was on its way and I would be rushed to hospital. At the time I was terrified not knowing what was wrong with me. After a blood transfusion and cameras put in to every orifice they could find I was diagnosed with Ulcerative Colitis (It's only recently that I found out how bad a state I was actually in and my blood levels were so low my doctor said she has never known anyone survive with those levels) so I spent the next week in hospital before I was sent on my way.


I still remember the day I left hospital with nothing more than a leaflet on IBD and list of tablets I had to take that would have given my Grandad a run for his money. The last week I had spent in hospital seemed like a dream and I would wake up any minute. But no it was all real and I spent the next 18 months taking around 20 tablets a day but they seemed to be working as slowly I began to feel better. I began to decrease my medication until I got to a point where I no longer needed to take any. I know how lucky I am to be able to keep my Colitis under control without medication as there are so many people that need to be medication forever.


Over the next few years I managed to keep my Colitis pretty stable however every 7 or so years I have a flare up and sometime require medication to help. This seems to be the pattern ever since I was diagnosed but regardless of the my Colitis I try my hardest not to let it affect my life as much as possible. I still have regular check ups and Colonoscopies and the prep that comes before a Colonoscopy is not fun (if you know then you know) but then 24 hours of discomfort is nothing in the grand scheme of things.


So that brings me to where I am today. Yes I still have Colitis, I still get cramps, I still have to run to the toilet sometimes, I still can't eat certain foods, I still cant drink alcohol, I still get fatigue and feel I can sleep for a week. Over time it has now affected my skin and my liver. I was embarrassed to talk about having Colitis when first diagnosed. I was the only person I knew that had it. Now its who I am, its nothing to be ashamed of and Colitis as well as other forms of IBD affects more people than you realise and in the 20 years I have been diagnosed I have noticed an increase in help available. If anyone would rather speak to someone that has been through it, either for support or advice I am always a message away.


Much love,

Neil, AKA Mr Flapjack




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