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The Bottom Line IBD

@bottomlineibd.bsky.social
578 followers 344 following 77 posts

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.bsky.social. Based in 🇬🇧.

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The Bottom Line IBD @bottomlineibd.bsky.social · 02/07/2026
“People’s symptoms are real - they’re not imagined, they’re not invented. Just because we don’t find abnormalities on tests, it doesn’t mean there’s nothing wrong.” - Prof Peter Irving on the importance of validating IBS symptoms in #IBD. 🎧 Full podcast episode ⤵️ open.spotify.com/episode/5yrQ...
open.spotify.com
#37 Understanding IBS in IBD - with Professor Peter Irving
Wrestling the Octopus (IBD) · Episode
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The Bottom Line IBD @bottomlineibd.bsky.social · 30/06/2026
A stellar episode on understanding IBS in #IBD awaits your ears later this week! Here's a snippet of our expert guest, Professor Peter Irving emphasising why Crohn's/UC patients need to be believed when discussing their gut symptoms. Patient centricity in action! open.spotify.com/show/0GgADPx...
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NIHR Biomedical Research Centre: Oxford @oxfordbrc.bsky.social · 16/02/2026
Last year, Prof James East led a team who published major new guidelines for the monitoring of patients with # IBD to prevent them going on to develop #BowelCancer. Listen to him speaking about the risks and how to minimise them on the Wrestling the Octopus podcast: open.spotify.com/episode/0Oq8...
open.spotify.com
#27 Understanding colorectal cancer risk in IBD - with Professor James East
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The Bottom Line IBD @bottomlineibd.bsky.social · 27/11/2025
* COMING SOON * To support our fellow #IBD patients, Nigel & I are adding a new feature to our Wrestling the Octopus IBD podcast - The Octopus Mailbag (TOM). IBDers - you'll be able to use TOM to submit your questions or dilemmas. We'll offer our patient perspectives - and some useful signposting.
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The Bottom Line IBD @bottomlineibd.bsky.social · 26/10/2025
🎧 Drug withdrawal in #IBD: a patient's perspective. open.spotify.com/episode/3Tcf... #crohns #crohnsdisease #ulcerativecolitis #inflammatoryboweldisease #infliximab
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#19 Rachel reflects on staying in Crohn's remission, four years after stopping infliximab
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The Bottom Line IBD @bottomlineibd.bsky.social · 25/09/2025
Let's talk about diet in #IBD! Our new podcast episode does just that with our special guest, principal gastro dietitian, Dearbhaile O'Hanlon. Hope you enjoy it! open.spotify.com/episode/3Uwq...
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#16 Learning the basics of diet in IBD - with dietitian Dearbhaile O'Hanlon
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The Bottom Line IBD @bottomlineibd.bsky.social · 15/09/2025
Bile acid diarrhoea / malabsorption can be a big problem for Crohn's patients who've had their terminal ileum removed. Professor Julian Walters (@jrfw51.bsky.social) joins our latest #IBD podcast episode to give us concise and up-to-date information on BAD/BAM. 🎧 Listen here: pod.link/1798553243
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The Bottom Line IBD @bottomlineibd.bsky.social · 29/08/2025
Really enjoyed recording this #IBD podcast episode on bile acid diarrhoea / malabsorption with Prof Julian Walters and Nigel. I learnt so much from both the clinical and patient perspective. Thanks to both of them. ⭐ #wrestlingtheoctopusibd
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The Bottom Line IBD @bottomlineibd.bsky.social · 12/08/2025
Our #IBD patient podcast, Wrestling the Octopus, has just notched up its 1000th download! To mark this milestone, we've just published an episode on tackling mental health challenges in Crohn's and UC - with IBD clinical psychologist, Dr Stacey Boardman. Lots of top tips! ⤵️ tinyurl.com/459d97vn
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#12 Mental Health and IBD with Clinical Psychologist, Dr Stacey Boardman
Wrestling the Octopus (IBD) · Episode
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The Bottom Line IBD @bottomlineibd.bsky.social · 19/07/2025
Meet Rob, a UK lawyer now living in the US who developed Crohn’s disease 3 years ago. Rob joined Nigel and me on our #IBD patient podcast to discuss why he actively pursued early surgery - and just how important family support has been to him in managing his IBD. open.spotify.com/episode/69OY...
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#8 From Birkenhead to Philadelphia - an IBD Patient's Story
Wrestling the Octopus (IBD) · Episode
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The Bottom Line IBD @bottomlineibd.bsky.social · 17/06/2025
* NEW IBD PATIENT PODCAST EPISODE * Check out Part 2 (Episode 6) of our #IBD patient podcast with Dr Mark Samaan. ⭐️ Dr Samaan returns to answer another set of our common patient questions on Crohn's and UC - we hope you'll find it an informative and educational listen! open.spotify.com/epi...
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#6 Part 2 - More IBD patients' questions answered by Dr Mark Samaan
Wrestling the Octopus (IBD) · Episode
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The Bottom Line IBD @bottomlineibd.bsky.social · 12/06/2025
Episode 6 of our #IBD patient podcast, "Wrestling the Octopus" gets expert answers to some common questions on Crohn's disease and ulcerative colitis. Joining us in this special two-parter is consultant gastroenterologist, Dr Mark Samaan from Guy's & St Thomas'. ⭐ open.spotify.com/episode/6Adm...
open.spotify.com
#6 Part 1 - IBD patients' questions answered by Dr Mark Samaan
Wrestling the Octopus (IBD) · Episode
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The Bottom Line IBD @bottomlineibd.bsky.social · 10/06/2025
Coming soon... a consultant gastroenterologist answers some common questions on inflammatory bowel disease for our #IBD patient podcast, Wrestling the Octopus. While that's cooking, check out our other episodes here: wrestlingtheoctopusibd.buzzsprout.com #crohnsdisease #ulcerativecolitis
wrestlingtheoctopusibd.buzzsprout.com
Wrestling the Octopus (IBD)
Two long-term IBD patients, Rachel and Nigel, share their experiences and perspectives on living with inflammatory bowel disease (Crohn's disease and ulcerative colitis).
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The Bottom Line IBD @bottomlineibd.bsky.social · 19/05/2025
* NEW IBD PODCAST EPISODE * It's #WorldIBDDay - which surely calls for us to shoot the breeze on various #IBD topics! Nigel & I chat ideas for beating fatigue, the cost of Crohn's, crazy things steroids made us do 🙃 and why neither of us are keen on wearables. open.spotify.com/episode/3nV3...
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#4 World IBD Day special - Shooting the breeze on IBD
Wrestling the Octopus (IBD) · Episode
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The Bottom Line IBD @bottomlineibd.bsky.social · 14/05/2025
The highlight of May for me each year is the blooming of my favourite rose, Ebb Tide. Though purple is usually my least chosen colour in flowers, this one is a gorgeous smoky shade of it. And the smell is just sublime... 😍
Ebb Tide rose - purple
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The Bottom Line IBD @bottomlineibd.bsky.social · 20/03/2025
Episode 2 of our #IBD patient podcast, Wrestling the Octopus is live! What factors should IBD healthcare professionals take into account when helping patients choose how they take their drugs: orally, IV or injections? Listen here: open.spotify.com/epi... #crohns #crohndisease #ulcerativecolitis
open.spotify.com
#2 How Do You Like Your IBD Medication Served... Oral, IV or Injection?
Wrestling the Octopus (IBD) · Episode
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The Bottom Line IBD @bottomlineibd.bsky.social · 12/03/2025
The Dilemmas of Disclosing Crohn’s Disease at Work and the Factors Impacting the Decision. #ibd #crohns #crohnsdisease www.mdpi.com/2624-5647/7/...
mdpi.com
The Dilemmas of Disclosing Crohn’s Disease at Work and the Factors Impacting the Decision
Background/Objectives: Individuals with Crohn’s disease often experience challenges at work and are confronted with the decision of whether to disclose their health status in their workplace. This stu...
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The Bottom Line IBD @bottomlineibd.bsky.social · 08/03/2025
We don't have all the answers when it comes to cracking the mysteries of #IBD, but we should never forget the privilege of modern medicine. I'm keeping this front of mind today on #InternationalWomensDay in remembering our bygone IBD sisters who had fewer treatment options than us. To their memory.
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Nigel H 🎸🎸🎸🎸🥁 @crohnoid.bsky.social · 19/02/2025
My compatriot and fellow Crohn’s patient suggested we should make a podcast about IBD, so we did. First episode is now up on Spotify - open.spotify.com/show/0GgADPx... We had fun making it and I’ve learnt a lot about editing. There may be a few rough edges for this first one!
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The Bottom Line IBD @bottomlineibd.bsky.social · 18/02/2025
Welcome to mine and @Crohnoid's new 8-episode #IBD patient podcast, "Wrestling the Octopus" (title pinched from Nigel's book of the same name!). In this episode, we're debating the hot topic of starting and stopping IBD medication. We hope you enjoy it! 🎧 🥂 open.spotify.com/episode/06rH...
open.spotify.com
#1 To start or stop IBD medication? We debate this hot topic!
Wrestling the Octopus (IBD) · Episode
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The Bottom Line IBD @bottomlineibd.bsky.social · 03/02/2025
Seems like there's a disproportionately high number of sports people who end up with #IBD. Possibly my imagination, but it certainly feels that way... www.bbc.com/sport/articl...
bbc.com
Jarl Magnus Riiber to retire aged 27 after Crohn's disease diagnosis
Jarl Magnus Riiber, the most successful Nordic combined athlete of all time, will retire at the end of the season aged 27 after being diagnosed with Crohn's disease.
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The Bottom Line IBD @bottomlineibd.bsky.social · 22/01/2025
Offering #IBD patients a place of psychological safety in clinic is one of the most critical things their doctor can do. Preferably early on. Everything else that might benefit a patient - from tests to treatments to behavioural changes - should queue up behind this pivotal thing, in my view.
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Shellie Radford @shelliejradford.bsky.social · 12/01/2025
new article from Nottingham BRC and @spmic-uon.bsky.social "Deconditioning in quiescent Crohn’s Disease patients with heightened fatigue perception" In JCC! academic.oup.com/ecco-jcc/adv...
academic.oup.com
Deconditioning in quiescent Crohn’s Disease patients with heightened fatigue perception
AbstractBackground & Objective. IBD fatigue aetiology is poorly understood. This study quantified body composition and physical function alongside prot
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The Bottom Line IBD @bottomlineibd.bsky.social · 01/01/2025
Happy New Year to you all! 🎉🥂 The terrible weather has given me a free pass to sit here with a glass of wine and a bag of prawn crackers! 🙃 New resolutions can kick in tomorrow... 😁 Hope you all have a great year ahead! 🧡
Tower Bridge at New Year 2025.
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The Bottom Line IBD @bottomlineibd.bsky.social · 22/12/2024
Season's greetings, #IBD-ers, and also random non-IBD people who've probably followed me by accident! 😁🎄 Thanks for all your support this year. Hope you have yourselves a great festive break! 🥂🧡
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Pearl Avery @pearlavery.bsky.social · 11/12/2024
It’s easy to forget the challenges #IBD patient’s face when it comes to the routine things in life we all have aspiration to work live provide for our families it’s not so easy with #Longtermhealthconditions #Society makes it hard to function @bottomlineibd.bsky.social how can we help change this
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The Bottom Line IBD @bottomlineibd.bsky.social · 07/12/2024
#CrohnsAndColitisAwarenessWeek Day 7 A few observations from me on 25 years living with #IBD: 🔸Hope is the most potent drug of all 🔸Time, outcome and experience will enrich your perspective 🔸Keep sight of life outside IBD 🔸Don't follow the herd. Pursue what matters to you
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The Bottom Line IBD @bottomlineibd.bsky.social · 06/12/2024
#CrohnsAndColitisAwarenessWeek Day 6 We don't talk enough about the importance of soft skills when #IBD specialists are treating patients. I truly believe these skills play the starring role when it comes to positive and durable outcomes for those of us with Crohn's or UC. What's your view?
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The Bottom Line IBD @bottomlineibd.bsky.social · 05/12/2024
#CrohnsandColitisAwarenessWeek Day 5 #IBD patients - did you know that 30-40% of people with Crohn's and UC also have IBS? So how are you supposed to know when it's your IBD kicking off and when it's #IBS? One way: ask your IBD team for a calprotectin test. Levels are not ⬆️ in IBS.
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The Bottom Line IBD @bottomlineibd.bsky.social · 04/12/2024
#CrohnsandColitisAwarenessWeek Day 4 It could be argued that the most precarious point in an #IBD patient's health is in staying well, not just getting well. Fewer appts and follow-ups when you're doing fine can mean eyes go off the ball. Stay on the beat with your IBD monitoring, folks! 🥁
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Nigel H 🎸🎸🎸🎸🥁 @crohnoid.bsky.social · 03/12/2024
For Day 3 of #CrohnsAndColitisAwarenessWeek I've posted an updated version of my blog called "Costing Crohn's". I hope that it illustrates the mental/physical/financial burdens of living with this incurable disease. www.wrestlingtheoctopus.com/costing-crohns #IBDSky #crohns #GastroSky
wrestlingtheoctopus.com
Costing Crohn’s | The Crohnoid Blog – Living with Crohn's Disease
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The Bottom Line IBD @bottomlineibd.bsky.social · 03/12/2024
#CrohnsAndColitisAwarenessWeek Day 3 Today I have a favour to ask, if I may! I have in mind a voluntary project for newly-diagnosed #IBD patients to help them with questions to ask at their appts. I'd love to crowdsource your input on various subjects. Please do DM if interested - thanks!
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Nigel H 🎸🎸🎸🎸🥁 @crohnoid.bsky.social · 02/12/2024
Day 2 of #CrohnsAndColitisAwarenessWeek Many #IBD patients end up having surgery. As a #crohns patient I had a stricture removed from my small intestine, a common problem, but the surgery had consequences that I didn't understand...until later www.wrestlingtheoctopus.com/donald-no-no...
wrestlingtheoctopus.com
We Don’t Know We Don’t Know | The Crohnoid Blog – Living with Crohn's Disease
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The Bottom Line IBD @bottomlineibd.bsky.social · 02/12/2024
#CrohnsAndColitisAwarenessWeek Day 2 Rumination in #IBD - I've got a lot to say about this one! But what is rumination... and importantly, what can we do about it as Crohn's and UC patients? I made this graphic earlier, I hope it will help if you can relate too... 🥂 #IBDSky #GastroSky
A graphic about rumination in inflammatory bowel disease (IBD)
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The Bottom Line IBD @bottomlineibd.bsky.social · 01/12/2024
#CrohnsAndColitisAwarenessWeek Day 1 25 years ago, I struggled to get doctors not to stifle a big old yawn when I asked about diet in #IBD. Diet studies are now a topic of great interest. Remember... what's dismissed as unlikely today might well be tomorrow's research - so ask those Qs!
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Paintings of London @paintingsoflondon.bsky.social · 25/11/2024
'Sunset over the Thames, Waterloo Bridge' (1918) by Emile Claus (Private collection)
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The Bottom Line IBD @bottomlineibd.bsky.social · 01/12/2024
Never a truer observation! 😁
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Simon Mayr @simonmayr.bsky.social · 28/11/2024
🎉 Exciting Update! 🎉 The full Women in IBD 2024 content, recorded at the Hilton London Tower Bridge on November 15–16, 2024, is now available online for FREE! academy.md-education.com/courses/wome... Don’t forget to share! #WomenInIBD #IBD2024 #FreeContent #IBDCommunity
academy.md-education.com
Women in IBD 2024
We are thrilled to share the full program from Women in IBD 2024, held at the Hilton London Tower Bridge in London, UK, on November 15–16, 2024.
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Nigel H 🎸🎸🎸🎸🥁 @crohnoid.bsky.social · 25/11/2024
Did I ever mention that I've written a book "Wrestling The Octopus"? It's about my experience of living with Crohn's disease & other little annoyances, from diagnosis up until 2021. It is available as a free download in various formats from my website - www.wrestlingtheoctopus.com/introduction/
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The Bottom Line IBD @bottomlineibd.bsky.social · 25/11/2024
Hello IBDers - I put together this table of Crohn's and UC medication, according to whether you take the drug orally, by injection or by infusion. May be useful if you have a preference for how you receive your #IBD meds. Based on UK prescribing only. #IBDsky ##GastroSky #GISky
Table showing IBD drugs per administration route (UK only)
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The Bottom Line IBD @bottomlineibd.bsky.social · 21/11/2024
#IBD gents... ... Can we agree men's sexual health in IBD doesn't get enough airtime? 👋 Well, tomorrow I'm interviewing the chief investigator of the @MenSHIBD study. So if you have any questions or comments, just drop me a DM and I'll weave them into the chat... 🥂 #IBDsky #GIsky #GastroSky
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The Bottom Line IBD @bottomlineibd.bsky.social · 20/11/2024
As the UK loses its mind over how cold it is currently, may I introduce my secret weapon to staying warm: the menopause. 😁 Yes, I really have been driving around with all four car windows open to abate the internal 🔥! My heating bill is going to be the envy of Britain! 😂❄️
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The Bottom Line IBD @bottomlineibd.bsky.social · 20/11/2024
Which drugs should and shouldn't be used in the medical management of Crohn's disease, according to patient characteristics? Here's an at-a-glance guide from ECCO's guidelines published earlier this year. #IBD #Crohns #CrohnsDisease
Official guide to which drug should and should not be used in the medical management of Crohn's disease, according to ECCO's guidelines of summer 2024.
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The Bottom Line IBD @bottomlineibd.bsky.social · 20/11/2024
We often hear "right patient, right drug, right time" to achieve the best outcomes. I would add to this "right specialist". Inspirational clinicians create aspirational patients. So important when your wheels are spinning in the mud navigating a chronic illness like #IBD.
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The Bottom Line IBD @bottomlineibd.bsky.social · 20/11/2024
It used to be said that people who are left-handed are at greater risk of #IBD and autoimmune diseases. Is there any truth to that theory, or has it since been debunked?? I'm not left-handed myself, just curious to know...
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The Bottom Line IBD @bottomlineibd.bsky.social · 19/11/2024
Managing #IBD can feel like a full-time job... often on top of an actual paid full-time job. Part of this is because we're often fuelled by indecision because of our IBD. But the burden of indecision is tiring in itself. Sometimes just making a choice - any choice - is the answer.
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Nigel H 🎸🎸🎸🎸🥁 @crohnoid.bsky.social · 16/11/2024
If you’ve ever sat, frustrated, in front of a new consultant whilst they spend 15 minutes at their computer reading through your medical file or ended up in A&E, and they are wondering where to begin, then maybe something like this might help. My medical history on a page has proved very useful
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