Yesterday was World IBD Day. People all around the world living with IBD shared their stories to raise awareness of the debilitating nature of IBD. Here's mine...
Some of you reading this may already know that I suffer from Crohn's disease, and have done since the age of 7. It took a while to get my diagnosis, as seems to be the case with many Crohn's and Colitis sufferers. Traditionally seen as an older person's disease, Crohn's is not usually the first consideration when a 7 year old complains of stomach ache and loss of appetite.
I was treated for several years with just Mesalazine tablets, but eventually needed steroid treatment and an operation to remove part of my ileum when I was 12, due to the chronic pain caused by tight strictures of disease. This relieved things for a while and I was feeling relatively normal until another flare up caused me to have a second round of steroids, a liquid diet and another operation to resect my ileum.
Another few years of health passed as I was treated with Infliximab, which left me feeling almost as if I had never had Crohn's, and then a third sever flare up during my first year exams at university meant I could only consume liquids, and I put myself back onto a liquid diet. My third operation followed, this time removing the remaining section of my terminal ileum, my appendix and first portion of my colon. I escaped without needing an ileostomy, something which terrified me and is a common outcome for many when having this sort of surgery.
However, a post-operative infection caused by a leak in the join of my bowel rendered me unable to stand up straight, walk long distances or carry any sort of weight without experiencing excruciating pain. I was hospitalised with a huge abscess which burst, leaving me with a fistula - a hole connecting my bowel to my skin and allowing waste to escape. I wore a bag for 9 months and was treated with Infliximab which enabled the fistula to heal, but the muscles never fully joined back together, leaving me with a puckered scar a bit like a gunshot wound.
I have since been treated with a combination of Infliximab and Azathioprine, and I try my best to eat healthily and exercise as much as possible to help myself in any way that I can. I'm feeling healthy and that makes me feel happy. I try to enjoy my life as much as I can as I never know what turn my Crohn's will take next. I'm sure many more sufferers will tell you that the weight of IBD hangs heavy over our heads, a constant cloud threatening to rain on our health and happiness.
When I read some of the inspiring stories of these strong and courageous people on the Crohn's and Colitis UK Facebook page (https://www.facebook.com/#!/crohnsandcolitisuk), I can't help thinking that I got off lightly with my Crohn's. I still have my bowel and the liberty to use a toilet it the usual way rather than through a hole in my stomach. I still have my life, unlike many sufferers who have so tragically lost their battle with these debilitating and life-shattering disorders.
So, that is my story. and this is me today, feeling happy and healthy and living my life to the full. Oh yeah, and sticking it to IBD!
Brilliant blog Han. I'm so proud of you and the way you take adversity in your stride.Modest with it too. you should be waring a cape. Love you x
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