Inspired and a follow up to my 2016 post “My Tips for Eating with an Ostomy” Disclaimer: This information is based on my own personal experiences. Please remember that each stoma and patient has different dietary constraints and experiences, and not all things will work for everyone. Finding your own path can take considerable time. If you are seeking dietary advice regarding your stoma, please contact your stoma nurse, dietician…
IBD
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2021 Goals & Intentions
Well, okay. 2020 did not happen the way anyone had expected. A global pandemic and almost a year of national lockdown? Crazy. Not only that but I had unexpected hernia surgery and a new diagnosis of diabetes. A huge amount of change, frustration and angst. But as 2020 concludes, I am thinking deeply about what I would like to achieve for 2021. Here they are: I decided to focus more…
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2020 – Year in Review
The most gobsmackingly weird year to date. Reading back on my 2020 goal post, written in the early days of 2020 feels like another time. A different time. Because who could predict anything that has happened, would actually happen? It feels like a cruel joke. But, I look at the goals I set back then and actually, they were really complex issues. As for goals, I set myself the following:…
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I AM SCARED, despite being in such a joyous season
December always feels like the most scary month for me. I have no triggers or flashbacks for this month in particular, but there is such a drive away from routine and towards joy, that it makes it a hard time. The last time I felt like this was back in 2015. I had been having numerous issues across the spectrum of my IBD. They culminated in an increased feeling of…
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Never Give Up Hope
Every October and November, I feel nostalgic. I feel the swirl of memories flood my mind, of being taken back to days in the hospital for treatment, of being hooked up to an IV stand. The first time was October 2013, when I moved from Humira to Infliximab. Going from an at-home self-injection to a hospital-based infusion was a big change. And in the beginning, I was very unwell; being…
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Flare Up Management
How to make decisions to help tame the IBD monster NB: This had been intended to be written before we knew anything about coronavirus (COVID-19) so there has been the addition of COVID information throughout this article; to be relevant and highlighted for easy visibility. Hospitals are undergoing significant changes as they adapt and respond to coronavirus. This means there have been changes to outpatient clinics and adjustments to local…
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Hernias & Stomas
I remember sitting in my hospital bed, after my first solo stoma bag change back in 2016 and my nurse said “you must always try and avoid a hernia. You are more susceptible to them now”. I was four or five days post op and I just nodded along. It was never a big worry to me – I wasn’t very sporty or active – didn’t they happen to just…
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Remaining Strong in the Face of Chronic Illness
“Just because you carry it well, does not mean it’s not heavy” I find myself thinking about this quote more and more frequently these days. Not sure if it’s lockdown impacting on my brain or the fact that life has been forever changed by the pandemic , but there is something to be said about kindness here. Chronic illnesses do not go away just because the country goes into a…
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Being [Unexpectedly] Medication Free for a Year
I remember vividly two days that began my journey with Vedolizumab; “she returned my call, the long and short of it being that “no, this isn’t working“; agreeing with my doubts since Monday. It’s not a decision to be taken lightly and it certainly wasn’t a happy and cheerful conversation but it was honest and realistic. Having me fail biological treatment like Infliximab was a shock.” INFLIXIMAB #14 – THE…