I don’t remember the exact moment my health step up another level, but somewhere around October 2011 – yes, way back then – my disease began being labelled as ‘complex’ Crohns disease. I didn’t know what that meant at that time, but it didn’t sound good. In reality, I learned that it meant I had strictures in my bowel which typical medications wouldn’t solely solve. I would eventually need surgery…
adventures with a chronic illness
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How to Make the Most of your F2F, Telephone & Virtual Appointments
William Osler once said, “a good physician treats the disease, whereas a great physician treats the patient who has a disease”. As the pandemic changed how healthcare was delivered for those with chronic conditions; who still required medical attention during lockdowns and the subsequent period after, there has been such a great desire for appointments to take place in a variety of different ways. And for most, having a choice…
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Let’s Talk About: Infusions in IBD
Welcome to my new mini-series, ‘Let’s Talk About” a place where I’ll be breaking down barriers to commonplace situations within IBD care. I’ve had Crohn’s disease since 2011 and have had a lot of both positive and negative experiences in my care within that time. I want to lessen the emotional burden of having IBD on the newly diagnosed as well as those who are established but experiencing new challenges.…
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Coming out of IBD Remission
I’ve had a lot of time – a decade – to think about remission. When my doctors said remission to me back in 2012 – I was less than a year into my official IBD journey – and I honestly thought “great, that’ll make things easier! Welcome back to normal life!” I feel pretty foolish now because nothing about remission then was easy. It was harder than flaring because I…
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Misconceptions about Living with a Chronic Illness
“When they said chronic I didn’t think. They meant every single damn day.” Chronic and invisible. Double whammy. Despite there being so much information out there about the basics of IBD, we as patients still experience misconceptions and misinformation throughout our patient journey. We need to do so much more to break down the barriers, stereotypes and general misconceptions about how we are perceived, living with a chronic illness. Below are…
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PTSD & Medical Trauma
NB: This post talks about post traumatic stress disorder and medical trauma. If you find anything in those two subject areas triggers, please do not continue to read onward.
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Why Are PICC Lines used in IBD?
I’ve been on biologics for almost all of the time I’ve had Crohn’s Disease, which is a decade now. That is a lot of needles and IVs and as a result, my veins are troublesome. In recent years, Its become very difficult to get cannulated for infusions, surgeries and even draw blood. This wasn’t going to be such an issue when I could switch my current medication – Vedolizumab –…
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Things I now Love about Living with a Stoma
If you’ve been following me for a while, you’ll know I live with an ileostomy – a type of stoma formed from the small bowel – after losing my colon to Crohn’s disease. Read more about my stoma and my journey here. Now having a major organ removed isn’t exactly easy. Nor is it straightforward. The surgeries performed to create stomas aren’t quick or without their complexities. But hopefully the…
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When might you need a Liver Biopsy with IBD?
What does the liver do? One of the jobs of the liver is to act as a “processing plant,” taking in what we ingest and helping to break it down into waste as well as useable materials. The liver also produces cholesterol, acids, and bile salts that get stored in the gallbladder until required to help break down ingested fats. How IBD affect the liver? In some people with IBD,…