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Shrinking the Silence

Sharing a voice on living with rare disease

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Easter weekend feels 😴
Living life on the edge✨✨
A shout out to my rectum, who probably doesn’t look as cute as this plush toy from @iheartguts, but is the reason I can have the most normal life in my situation. In short, my makeshift bowel, known as a #jpouch, connects to the small remaining bit of my rectum, allowing me to go to the bathroom as I used to before surgery. I am more aware that I can’t take this for granted, because I’ve already had to have surgery this year to remove polyps that have grown back....and there’s only so much this guy can take before having to be removed completely. Here’s to hoping that’s far down the track. #loveyourguts #familialadenomatouspolyposis #nocolonstillrollin
A great little drawing book my mum got me, all sorts of themes of things around me in my daily life - feat. breakfast 🤣#inthemoment #mindfullness #bepresent

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ampulla breakup cancer Chemo chronic illness Desmoid tumour empowered Familial adenomatous polyposis family FAP hair hair growth Hair loss Ileostomy invisible illness J-Pouch jpouch nurses oncology pixie cut polyps Proctocolectomy Rare Disease Rare Disease Day relationship Relationships scars surgery travel Wig work young patient

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