So, knowing I was going to be in town today for a dental check up, I decided to do some writing in a local coffee shop. Got a loyalty freebie so I was all set. But my stoma had other plans. I was just finishing up my coffee and got my notebook out, and pain shoots through my bag. My stoma is working overtime to push something through; last nights…
IBD
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How do I hate something that has saved my life?
No, seriously, how? Maybe the question should be ‘CAN I hate something that has saved my life?” or even “Can I hate something that has CHANGED my life?” Because, I can hate the fact that my disease was so bad, they had no other option than to remove my colon and give me my ileostomy. I can hate that fact until the cows come home, it still doesn’t change what…
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Hitting the Wall (of Denial and Regret)
I think like most people, I am guilty of living in some denial and regret in certain aspects of my life. When it comes to a chronic illness, it’s just that CHRONIC. It doesn’t go away, it can’t be cured only treated and those treatments change and sometimes fail. It takes time to become comfortable with what you have, what is wrong with you and how you go about living…
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Vedolizumab: The Restart
Following my subtotal colectomy in August; my IBD team recommended returning to Vedolizumab. I had already tried Vedolizumab; receiving the three loading infusions last winter. This is where I was and how I was feeling as 2015 turned into 2016: “… So, it hasn’t gotten any worse, but the past year’s drug choices haven’t made it any better. I’m on a plato; and its going down, albeit slowly, over time.…
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When Surgery Gives You Life: What Makes Me, Me
If anyone has asked me this last year or even a couple of months ago, I would have struggled to answer. Was I definable by my relationship? My role as a friend, a daughter, a sister, a cousin? My likes and dislikes? My invisible illness, even? I don’t hide the fact that I have Crohn’s Disease, a form of Inflammatory Bowel Disease (IBD) and it has defined my life –…
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Double Check Up – 22.09.16
We spent the morning traveling across the city to Queen Elizabeth Hospital (QE) for my liver check-up. I’ve been attending this particular clinic for almost three years since some routine blood tests revealed very high liver function results. Given my complicated IBD history, I’ve been seeing the head of the department, a Professor; and had lots more blood work done and specialised testing to give me a diagnosis. Not that…
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One month post op
“Time moves slowly but passes quickly.” That can be said for my recovery from surgery. I can’t quite believe its been a month already but in the same thought I can believe it. I’ve been experiencing recovery in real time and taken each day as it comes. It hasn’t been easy – but I knew it wouldn’t be – but its been better than my last experience of recovering…
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To new beginnings…
Tuesday 23rd August (cont’d) “I’ve got a space for you on the end of the emergency list today, could be this afternoon, probably this evening though.” Ward round this morning and surgeon is keen to remove my colon today. Despite being busy, he will stay and do my surgery when his list is complete. Turned out that meant waiting all day – still experiencing more blood than I’ve ever known…
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Nottingham GI Clinic – 14.09.16
It’s always abit weird to see how another hospital organise their clinics. This was our second visit to see Dr Moran – head of Digestive Disorders, specialising in clinical trials for IBD – to discuss my case. Since we last came in January, I’ve had two surgeries, three admissions, two MRI and a CT scan and a colonoscopy. Explaining the last six months was going to be fun. I took…