#crohnsdisease — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #crohnsdisease, aggregated by home.social.
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In remission but wondering if coffee, a beer, or Diet Coke is off the table?
After 24 years with Crohn's, here's my honest answer — including what I actually drink and why. The answer is more nuanced than most people want to hear.
https://ibdmovement.com/coffee-alcohol-and-carbonated-drinks-in-ibd-remission-my-experience/?utm_source=mastodon #CrohnsDisease #IBD #ChronicIllness #IBDAwareness
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In remission but wondering if coffee, a beer, or Diet Coke is off the table?
After 24 years with Crohn's, here's my honest answer — including what I actually drink and why. The answer is more nuanced than most people want to hear.
https://ibdmovement.com/coffee-alcohol-and-carbonated-drinks-in-ibd-remission-my-experience/?utm_source=mastodon #CrohnsDisease #IBD #ChronicIllness #IBDAwareness
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In remission but wondering if coffee, a beer, or Diet Coke is off the table?
After 24 years with Crohn's, here's my honest answer — including what I actually drink and why. The answer is more nuanced than most people want to hear.
https://ibdmovement.com/coffee-alcohol-and-carbonated-drinks-in-ibd-remission-my-experience/?utm_source=mastodon #CrohnsDisease #IBD #ChronicIllness #IBDAwareness
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In remission but wondering if coffee, a beer, or Diet Coke is off the table?
After 24 years with Crohn's, here's my honest answer — including what I actually drink and why. The answer is more nuanced than most people want to hear.
https://ibdmovement.com/coffee-alcohol-and-carbonated-drinks-in-ibd-remission-my-experience/?utm_source=mastodon #CrohnsDisease #IBD #ChronicIllness #IBDAwareness
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This week's IBD research digest: drug access barriers are shaping treatment decisions more than clinical evidence. Real-world data that validates what patients experience with prior auth and step therapy.
Plus: NSAID findings that challenge conventional wisdom.
10 stories, May 4–10. Clinical stage + practical implications marked for each.
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The hardest part of a new Crohn's drug isn't side effects, the injections, or the cost.
It's the not knowing.
A structured approach to self-assessment during treatment transitions — daily symptom logging, tracking "quiet wins" (sleeping through the night, eating without anxiety), and watching systemic signals beyond the gut.
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"Breakthrough treatment for Crohn's!" — I've been reading those headlines since 2002.
IBD Movement is where I break down what the research actually means for patients — from someone who's lived it for 23 years.
ibdmovement.com/?utm_source=mastodon
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Winding up missing an important #crohns tele appointment I was literally sitting waiting at my device to attend (for an hour!) because of stupid things really has me very, very annoyed this evening.
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Screening of 3,500 compounds against human stem cells induced to an inflamed condition, followed by testing in mice, found that glycyrrhizin, a compound extracted from black licorice, reduced inflammation and cell death. The results may point toward a treatment for IBD and Crohn's Disease.
Summary: https://knowridge.com/2026/04/black-licorice-compound-could-reduce-gut-inflammation-study-finds/
#Science #Health #Inflammation #IBD #CrohnsDisease #BlackLicorice
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Oooh! I remembered to give myself my dose of #skyrizi today.
Go me!
And that's with post-general-anesthesia brain!
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I just want to be done with the thing already.
But a few wins:
- Pharmacy had the prep they want me to use, and it wasn't GoLytely
- New healthcare got me my ID card with all the necessary numbers before I headed to the pharmacy to pick up the prep
- I got a morning procedure time slot instead of an afternoon one -
Today I'm thankful for modern medicine that can help my body realize my intestinal tract is actually still important and useful and not and enemy that needs to be constantly attacked.
There a lot wrong with American healthcare, but for this part of if (and that I can actually access it), I'm grateful.
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Gut DNA #virome enterotype dictates #inflammation heterogeneity through tuning the phage-bacteria-sphingosine-intestine axis in #Crohn's disease
https://www.sciencedirect.com/science/article/abs/pii/S1931312826000417 #CrohnsDisease #microbiome
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'I have Crohn's Disease - here are 5 things I wish I'd known sooner'
https://web.brid.gy/r/https://www.mirror.co.uk/news/health/i-crohns-disease-here-5-36308482
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A Crucial #GeneticMutation Behind #CrohnsDisease Has Finally Been Revealed
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CW: Maunderings of a doddering fool
(The page layout and fonts didn’t quite match the rest of the book.) it was on a new thing called the World Wide Web. It looked pretty cool. I found Mosaic, one of the first web browsers, and fell in. One day in the alt-chrons group I said, somebody could make a web page about #crohnsDisease. And then I went and did that, late in August ‘93. (5/7)
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Japan witnessed a 40% rise in cases of the chronic inflammatory bowel diseases ulcerative colitis and Crohn’s disease in just eight years, according to a government-backed study. https://www.japantimes.co.jp/news/2025/09/29/japan/science-health/japan-bowel-diseases-patients/?utm_medium=Social&utm_source=mastodon #japan #sciencehealth #mhlw #ulcerativecolitis #crohnsdisease #tohouniversity #kyorinuniversity #osakametropolitanuniversity #health #medicine
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Came across this bioRxiv preprint today:
Alkalinized Filtered Water Induces Changes in the Gut Microbiome in Inflammatory Bowel Disease.
https://www.biorxiv.org/content/10.1101/2025.09.19.677298v1It seems weird that they didn't measure known biomarkers of IBD, calprotectin, or c-reactive protein. I'm not an MD, and I know the patients are supposed to be in remission, but wouldn't those be two things you measure in this type of patient population and this group of diseases??
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After years of IV infusions and hours traveling to and from IV centers, self-medicating at home in five minutes while also continuing to work is still amazing.
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My #CrohnsDisease has been well controlled since 2020 (thanks to awesome, yet horribly expensive medications). But every now and then I have a day that reminds me what uncontrolled #Crohns is like.
Today is one of those days.
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I have reached the stage of my current dose of #Crohns meds where my body is letting me know the med is low and starting to rumble.
I'm due tomorrow.
Thank the stars. -
Increased succinate in the food and gut of mice induced symptoms of inflammatory bowel disease. Succinate acts by impairing the effectiveness of T cells that regulate inflammation.
Summary: https://medicalxpress.com/news/2025-06-common-metabolite-worsens-inflammatory-bowel.html
Original paper (not open access): https://www.nature.com/articles/s41590-025-02166-y
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@lisamelton
Fistulas are no fun, ever. I’ve had a few, due to #crohnsdisease, but mercifully not in a long time. Several friends had the recto-vaginal version and those are even less fun than the vanilla version I had. Here’s hoping yours heal quickly so you can get back on schedule with all the rest of it. ❤️ -
In March of 2023, my kiddo had recently been diagnosed with #CrohnsDisease, so when the Crohn’s & Colitis Foundation did a Pie Day fundraiser, I agreed to let my family hit me with one pie for every $50 I raised.
When I made that deal, I had no idea that I would raise over $750! But a promise is a promise.
That was over two years ago, but I am not a video producer, and it took a long time for my #ADHD brain to find itself in the right space to edit this all together. Better late than never though, right? And I’m really happy with how it turned out.
#PiDay #PieDay -
👋 Say hi to our new project INTERCEPT, which will develop biomarkers that can identify people with a high risk of developing #CrohnsDisease. 🧪 A further trial will then evaluate whether full onset of the disease can be prevented.
👉 More: https://europa.eu/!3GFHbF
#IHITransformingHealth #HealthResearch #HorizonEU #HorizonEurope #EUResearch -
This brought to you by learning today that I'll have four weeks to potentially find and see a new care team, get them to issue a new script to a new pharmacy benefit provider, get pre-approval for Skyrizi from said pharmacy provider, and get the med delivered by a new specialty pharmacy.
But I can't even find out yet if my doctors are in network with the new plan or if the benefits will even consider covering Skyrizi. So that's exciting.
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It's #skyrizi injection day.
I missed the morning appointment on my calendar and just happened to have a mental spark of "isn't that supposed to happen today?"So I clearly need to do something better with my reminders/appointments/thingamajigs.
Anyway, it's out and coming to room temperature.
Still better than having to drive 2 hours for a 3 hour IV infusion, then 2 hours back (and after Benadryl!) like I was doing for Inflectra.
Aren't bodies fun?
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Another #CrohnsDisease flare up for me today it seems. I don't know why, but Sunday seems to be a trigger in of itself...
Can't be anything that I'm doing, I've only been awake for four or five hours and have hardly done anything in that time, let alone eat/drink anything (aside from some water for daily meds).
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Wow!
Linking a particular bacteria of the gut microbiome in a chain that could potentially be a source of major depression. Follow up research could also show how environmental contaminants combined with the metabolism of the gut microbiome could be linked to autoimmune and other conditions.Science is amazing!
Can't wait to see where this drives other future research and, eventually, treatments.https://hms.harvard.edu/news/drawing-line-gut-microbiome-inflammation-depression
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Skyrizi injection done.
A five minute process is so much easier than a three hour infusion. Or the one hour infusion at a facility two hours away that the initial Skyrizi startup process involved. -
CW: Chronic illness discussion hospitals Crohn’s and poop chat
I must be doing a bit better this morning as I was allowed to get up to the toilet, and I’m attempting to decipher France Inter 7/10 sur la radio. Coffee and yogurt so hopefully a none too painful 💩 to come, which I am dreading in case of any straining needed. Typically my Crohn’s has been so well behaved that I have a wee bit of difficulty once a day at the moment.
#crohnsdisease #crohns #chronickidneydisease #ckd #kidneydisease
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Crohns being a pain again.. Some sort of ileus / obstruction thing going on. It’s happened before. Giving it a few hours to decide if I need to go to A&E. Blah. #crohnsdisease
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Researchers discovered that dysfunctional #mitochondria influence the #gutmicrobiome and lead to chronic #IntestinalInflammation, possibly triggering #CrohnsDisease. Their study offers insights for new treatments: http://go.tum.de/981882 🔬
📷Chair of Nutrition and Immunology
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CW: Drug reference/cronic pain/ making light of the pain but still true.
Actually asked by specialists what helps best with a crohns flair up.
Mild: Weed
Fuck an alien will explode from my stomach: Ketamine and I mean K holed! 😂
Prescriptions do not seem likely 😂😘💖
#crohnsdisease #crohnsfighter #cronicillness -
Did my first #Skyrizi OBI home injection earlier and it went rather smoothly! Small issue of the door not closing flush, but that was an easy fix. The little device was louder than I expected, but 3-5 minutes later and it was over before I knew it. Taking it off was probably the hardest part of it due to how adhesive the adhesive was lol. Slower than #Humira, quicker than an infusion, I’ll take it!
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Last in lab infusion for #skyrizi before switching to self injection and I get sat next to a chatty Cathy who doesn’t mind her own.. at least I got some local recommendations? #CrohnsDisease
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Progress is being made every day on the front lines of #IBD research. We know the answers are out there and will one day bring relief to those who suffer every day. Let's prioritize unlocking the causes, which will in turn lead us to cures.
#crohns #crohnsdisease #crohnscolitis #crohnsawareness #crohnswarrior #ibdawareness #ibdwarrior #crohnsdiseaseawareness #crohnsfighter -
Many studies have explored the role of bacteria in #IBD, but research has been more sparse on viruses, which may hold valuable clues to disease triggers and development.
#crohnsdisease #crohns #CrohnsColitis #crohnsandcolitis #inflammatoryboweldisease #virome #viruses
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Many studies have explored the role of bacteria in #IBD, but research has been more sparse on viruses, which may hold valuable clues to disease triggers and development.
#crohnsdisease #crohns #CrohnsColitis #crohnsandcolitis #inflammatoryboweldisease #virome #viruses
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Many studies have explored the role of bacteria in #IBD, but research has been more sparse on viruses, which may hold valuable clues to disease triggers and development.
#crohnsdisease #crohns #CrohnsColitis #crohnsandcolitis #inflammatoryboweldisease #virome #viruses
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So I had my #inflectra infusion on Friday for my #crohnsdisease as got a new nurse who was real sweet but she MANGLED my arm.
Stuck me once, missed, went fishing 😭
Stuck me again, missed, went fishing 😡
Third time, she got me finally. Then took my blood pressure and it was pretty high I said
"Give me a minute I'm decompressing."
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First 10 drugs for #Medicare price negotiations chosen
Makers of the drugs have 30 days to agree to participate.#Eliquis
#Jardiance
#Xarelto
#Januvia
#Farxiga
#Entresto
#Enbrel
#Imbruvica
#Stelara#Fiasp, #FiaspFlexTouch, #FiaspPenFill, #NovoLog, #NovoLogFlexPen and #NovoLogPenFill
#BloodClots #Diabetes #Psoriasis #CrohnsDisease
https://www.politico.com/news/2023/08/29/first-10-drugs-chosen-for-medicare-negotiations-00113273 -
First 10 drugs for #Medicare price negotiations chosen
Makers of the drugs have 30 days to agree to participate.#Eliquis
#Jardiance
#Xarelto
#Januvia
#Farxiga
#Entresto
#Enbrel
#Imbruvica
#Stelara#Fiasp, #FiaspFlexTouch, #FiaspPenFill, #NovoLog, #NovoLogFlexPen and #NovoLogPenFill
#BloodClots #Diabetes #Psoriasis #CrohnsDisease
https://www.politico.com/news/2023/08/29/first-10-drugs-chosen-for-medicare-negotiations-00113273 -
First 10 drugs for #Medicare price negotiations chosen
Makers of the drugs have 30 days to agree to participate.#Eliquis
#Jardiance
#Xarelto
#Januvia
#Farxiga
#Entresto
#Enbrel
#Imbruvica
#Stelara#Fiasp, #FiaspFlexTouch, #FiaspPenFill, #NovoLog, #NovoLogFlexPen and #NovoLogPenFill
#BloodClots #Diabetes #Psoriasis #CrohnsDisease
https://www.politico.com/news/2023/08/29/first-10-drugs-chosen-for-medicare-negotiations-00113273 -
First 10 drugs for #Medicare price negotiations chosen
Makers of the drugs have 30 days to agree to participate.#Eliquis
#Jardiance
#Xarelto
#Januvia
#Farxiga
#Entresto
#Enbrel
#Imbruvica
#Stelara#Fiasp, #FiaspFlexTouch, #FiaspPenFill, #NovoLog, #NovoLogFlexPen and #NovoLogPenFill
#BloodClots #Diabetes #Psoriasis #CrohnsDisease
https://www.politico.com/news/2023/08/29/first-10-drugs-chosen-for-medicare-negotiations-00113273 -
First 10 drugs for #Medicare price negotiations chosen
Makers of the drugs have 30 days to agree to participate.#Eliquis
#Jardiance
#Xarelto
#Januvia
#Farxiga
#Entresto
#Enbrel
#Imbruvica
#Stelara#Fiasp, #FiaspFlexTouch, #FiaspPenFill, #NovoLog, #NovoLogFlexPen and #NovoLogPenFill
#BloodClots #Diabetes #Psoriasis #CrohnsDisease
https://www.politico.com/news/2023/08/29/first-10-drugs-chosen-for-medicare-negotiations-00113273 -
Together we can make our voices heard. Let's not be satisfied with current #crohns treatments, which never work at all for some patients and eventually fail many. We urgently need to find the causes of #crohnsdisease rather than developing more band-aid-like medications. A cure for Crohn's IS possible if we make it the priority.
#ibd #crohnswarrior #ibdwarrior #CrohnsColitis #crohnsandcolitis #crohnsawareness #ibdawareness #crohnsfighter #crohnssucks -
Together we can make our voices heard. Let's not be satisfied with current #crohns treatments, which never work at all for some patients and eventually fail many. We urgently need to find the causes of #crohnsdisease rather than developing more band-aid-like medications. A cure for Crohn's IS possible if we make it the priority.
#ibd #crohnswarrior #ibdwarrior #CrohnsColitis #crohnsandcolitis #crohnsawareness #ibdawareness #crohnsfighter #crohnssucks
