Promoting patient education in #IBD (Crohn's & UC). I help patients tell their stories. In the real world I'm Rachel, an IBD patient advocate. Also at @IBDwomen

London
Joined May 2015
GLP-1 drugs in #IBD are a hot talking point at the moment - and they're throwing up some interesting findings, to boot. We've just had a VERY special expert guest confirmed for our podcast hot seat on this one! 🤩 So please do send us your questions on this topic. Thanks.
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Mechanisms of extra-intestinal manifestations in IBD @my_ueg UEGWeek
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Day 2 of #UEGWeek2026 🍎 Even the apples are branded. Fibre on the go, Barcelona, let's go. #weareUEG #GITwitter
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STRIDE-III presented at #UEGWeek2026 by Axel Dignass (Lancet Gastro Hep, online today): time-dependent targets in IBD • <1–2 mo: symptomatic response • 2–3 mo: symptomatic remission • 4–6 mo: FC acceptable, CRP normal • 7–12 mo: endoscopic remission + QoL, disability, fatigue
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Prof Axel Dignass summarizes the STRIDE-III consensus from IOIBD—arduous process. Actionable targets supported by T2T trials. Adjunctive targets supported by more circumstantial evidence. More definition of FCP levels. Adding fatigue, urgency. #uegweek2026 @UegWeek @DignassAxel
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STRIDE-III presentation by @DignassAxel at @my_ueg #uegweek2026
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Prof Ailsa Hart: wk 48 results of FUZION trial of guselkumab for fistulizing Crohn’s. Complex study design and novel endpoints. 2/3 AT-exposed, 30% proctitis. Endpoints basically maintained at wk 48. @DrAilsaHart @UegWeek #uegweek2026
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Prof Vip Jairath VERDICT—basically treating to endoscopic remission in UC was significantly better than treating to symptomatic remission, but treating to histo remission didn’t add anything significant @vipuljairath @UegWeek #uegweek2026
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A century of IBD drugs. Part 1: the people behind the discoveries. It starts with a post-mortem. London, 1859. Samuel Wilks calls it ulcerative colitis. It was probably Crohn's. Then half a century of a handful of drugs. Sulfasalazine. Steroids. 5-ASA. Thiopurines. Ciclosporin. The first randomised trial in IBD? Cortisone v placebo, Oxford, 1955. Then 1993. Sander van Deventer and his team in Amsterdam give Jan Vilček's anti-TNF antibody in Crohn's for the first time. Infliximab. Everything changes. After that, gut-only vedolizumab, IL-23, JAK inhibitors. But this is really about the people. • Nanna Svartz, Sweden's first woman professor of medicine, designed sulfasalazine. • Gertrude Elion made 6-mercaptopurine and won a Nobel Prize. • Azad Khan, from Bangladesh, showed which half of sulfasalazine actually works. • Andrew Lazarovits made the antibody that became vedolizumab and died at 43, long before it was licensed. • Brian Feagan gave the very first dose of vedolizumab, in London, Ontario, and led the trials from phase 2 to GEMINI 1. He died last November. • Stephan Targan led the first big infliximab trial, then tied TL1A to gut inflammation. We should not forget them. Who did I miss? Part 2 soon: the trials that taught us how to use them.
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Professor Peter Irving joined us recently on the podcast to discuss the challenges of living with IBS when we have #IBD. This affects up to 40% of us with Crohn's or UC. Here's a one-pager summarising the main points. Full episode (#37) available on Wrestling the Octopus IBD.
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I have been asked a number of times to add a cheat sheet about TDM It took me longer than expected to summarize the evidence and simplify it, please if you have any suggestions let me know Full size ➡️ ibd-eii.com/cheat-sheet/
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Thanks to everyone who responded to our recent Wrestling the Octopus #IBD podcast survey! Nigel and I have recorded a quick episode to discuss your feedback, plus future IBD topics you'd like us to cover. podcasts.apple.com/us/podcas…
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Are you an ulcerative colitis patient on vedolizumab? Three types of remission have been studied to assess how long it takes from the time they're each achieved to the first UC-related complication. Results of this major new #IBD study (VERDICT) announced next week. Stay tuned!
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Time for my first solo Wezenla (ustekinumab) injection, after a nurse showed me the ropes 8 weeks ago. Waiting for it to come to room temperature. The nurse said that 30 minutes out of the fridge will make it sting less. Will spare you a photo of my naked thigh! 😁 #IBD
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Other upcoming podcast episodes on the slate include: fatigue in IBD, pain in IBD and occupational health in IBD. Plus the next in our series of patients' career choices when living with #IBD. All topics that welcome your questions! So please do keep them coming... Thanks.
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⭐ A reminder to submit any questions you have for our GLP-1s in IBD podcast episode we're recording in early November. Do not miss this one! We've got a much-loved #IBD international master educator in the hot seat! ⭐
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Had to go for an MRI this morning re: painful coccyx. Asking directions on arrival, I was told by a disinterested front desk person to "read the board". I had read the board. But I still had a question. "It's on the board" came the reply. @GSTTnhs, your patients deserve better.
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How a Crohn's diagnosis shaped a career change to mental health nursing. Hear Hakeem's story in our latest #IBD podcast episode. This is the first in a series of shows dedicated to patients talking about how IBD has influenced their job choices. open.spotify.com/episode/24m…
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My podcast co-host, Nigel has radically improved his QoL by following Prof Walters' advice on the timing of BAD/BAM medication. He can (and does!) wax lyrical about it 'til the cows come home! We need more at the coalface stories like this to drive positive change in #IBD care!
A call to arms to #IBD specialists! Are you talking enough with your patients about bile acid diarrhoea / malabsorption? Our BAM podcast episode with Prof Julian Walters sees crazy numbers of daily downloads - so there's a real unmet need here... 🎧 open.spotify.com/episode/0m6…
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A call to arms to #IBD specialists! Are you talking enough with your patients about bile acid diarrhoea / malabsorption? Our BAM podcast episode with Prof Julian Walters sees crazy numbers of daily downloads - so there's a real unmet need here... 🎧 open.spotify.com/episode/0m6…
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Our nationwide survey of 738 people with #IBD in Sweden 🇸🇪 More people with #CrohnsDisease than #UlcerativeColitis change their diet due to IBD and avoid certain foods to prevent flare 42% received no diet advice from health professional! Link 👉🏼link.springer.com/article/10…
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