#IBDTC - Twitter Hashtag

almost 5 years ago

@DisneyBen @GodHere3 @RNAppleby @baduksupport @HPB_OMEGA_study Here's my story, the short version - https://t.co/zcKMh4DR4y For the longer version there's Chapter 19 of my book (plug, plug) #IBDTC #BAM #BAD #BSM

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Nigel H 🎸🎸🎸🎸🥁 @Crohnoid

almost 5 years ago

@pearl_avery @bottomlineibd We did get off to a rather slow start! Just Rachel and myself conversing. I blame Masterchef although the sight of the dismembering of a cuttlefish would have been enough for anyone to switch off. #IBDTC

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Dr Pearl Avery RN, ANP, PhD 💜 @pearl_avery

almost 5 years ago

#IBDTC apologies I was hoping to join in last night @bottomlineibd @Crohnoid great #IBD Community conversation really interesting thread 🧵 great to read through

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Nigel H 🎸🎸🎸🎸🥁 @Crohnoid

almost 5 years ago

@Lizziemcc73 I know that some doctors balk at the additional cost of #colesevelam over #Questran and the fact that it is prescribed off label as it is not licenced for treating #BAM. My GP is vey enlightened and gave me a prescription for both and said "you choose". #IBDTC

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hortie @hortie_c

almost 5 years ago

@Crohnoid Has anyone taken the third dose for Moderna? Any side effects different from what you experienced with the first two doses? #IBDTC

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Nigel H 🎸🎸🎸🎸🥁 @Crohnoid

almost 5 years ago

@Lizziemcc73 Have you tried Colesevelam? I find it helps a lot and being in tablet form must be much easier to take than powders. Have recently worked with NICE on BAM and stressed just how debilitating the condition is on our QOL #IBDTC

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Nigel H 🎸🎸🎸🎸🥁 @Crohnoid

almost 5 years ago

@SimonBinning How strange. I would have put money on that! What was your SeHCAT reading? #IBDTC

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Nigel H 🎸🎸🎸🎸🥁 @Crohnoid

almost 5 years ago

@markdodds11 @ClaireK46618120 @bottomlineibd Was that Amy's documentary? Calpro is a major tool in assessing #crohns #IBD and should be in every gastro's armoury #IBDTC

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Nigel H 🎸🎸🎸🎸🥁 @Crohnoid

almost 5 years ago

@Markymoo79Mark Very regular blood tests! Aza served me very well for 8 years but then caused platelets issues. I do not regret taking it. The other thing to be aware of is some patients suffer flu-like symptoms when they first take it but forewarned is forearmed #IBDTC

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mark seagreaves @Markymoo79Mark

almost 5 years ago

@bottomlineibd I'm back hospital nextl Friday will take you advice onboard and talk to my doctor thank you #IBDTC

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The Bottom Line IBD @bottomlineibd

almost 5 years ago

@Markymoo79Mark I have been where you are now, Mark. I worried and worried about starting meds. Fortunately, I had no problem with aza - but some do, some don't. What helped me was asking my doctor what the management plan was if things went wrong. I was happy he had a Plan B, C and D! #IBDTC

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Nigel H 🎸🎸🎸🎸🥁 @Crohnoid

almost 5 years ago

Would be interested to know how many #IBD patients have had their termial ileum removed and now suffer from #BAM #bileacidmalabsorption. One of the champions of bile acid issues died recently. I wonder who will take up the challenge? #IBDTC

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Not giving up coffee Doc💙🇺🇦😷 @Runsforcoffee1

almost 5 years ago

@bottomlineibd #IBDTC Agreed .Have started cycling to improve heart and esp lung function which can be compromised by #IBD meds

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Nigel H 🎸🎸🎸🎸🥁 @Crohnoid

almost 5 years ago

@ClaireK46618120 @bottomlineibd The stress of a new job is never easy plus the return to work after WFH difficult. I remember what it was like returning to work after recovery from surgery. Hope it resolves itself. If it's any comfort I reached 1700 calpro and it's now down to under 50 #IBDTC

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The Bottom Line IBD @bottomlineibd

almost 5 years ago

@ClaireK46618120 @Crohnoid I hope you get it under control soon, Claire. I used to enjoy the routine of working away from home - but, like you, my Crohn's was sensitive to work-related stress. #IBDTC

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mark seagreaves @Markymoo79Mark

almost 5 years ago

Hello I was diagnosed with uc in January after repeated flare ups my ibd team are looking to put me on azathioprine I'm just a bit worried about the side effects any advice on this drug thank you #IBDTC

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Nigel H 🎸🎸🎸🎸🥁 @Crohnoid

almost 5 years ago

@bottomlineibd @DrTiffTaft I didn't know that. I assume we'll al be offered a booster later in the year along with the flu jab. NHS are gearing up for bad flu season as people have not been having the usual amount of contact with others and building uo immunity #IBDTC

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The Bottom Line IBD @bottomlineibd

almost 5 years ago

If there is one thing that COVID has pulled into sharp focus for me it's how we, as #IBD patients, might better self-manage our health. Waiting lists are no joke. For me, this involves an overhaul of my diet with more exercise. What are other people's thoughts on this? #IBDTC

Nigel H 🎸🎸🎸🎸🥁 @Crohnoid

almost 5 years ago

Let's open up the discussion to any #IBD related issues you would like to raise. Please remember to add #IBDTC to any of your Tweets or responses #IBDTC

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The Bottom Line IBD @bottomlineibd

almost 5 years ago

@Crohnoid @DrTiffTaft Not too sure. I know that those #IBD-ers on vedo are not being offered the third dose in the UK. I guess this is because it's gut selective and isn't considered as immunosuppressive but hopefully someone with some real knowledge can explain that! #IBDTC

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Nigel H 🎸🎸🎸🎸🥁 @Crohnoid

almost 5 years ago

@DrTiffTaft Same here, "only on Vedo!" but haven't been given the value of antibodies. Is there a chart that correlates values to #COVID protection? #IBDTC

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