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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 24/08/2025

Where have I been since IBD surgery? I broke my back. Yes, you read that right and it’s still so weird to say, but today I need to outright say it. Osteomyelitis 🦠

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 28/06/2025

Extremely overdue & v quick update for those who don’t know due to extended SoMe break. 𝒮𝓊𝒸𝒸ℯ𝓈𝓈𝒻𝓊𝓁! #IBD/#Stoma refashion Jan 29, 2025. ARFID is tough. Unrelated, March, thoracic #osteomyelitis seeded at T10/T11 - ID severely undertreated. Led to extensive surg of 𝐅𝐔𝐋𝐋 spinal fusion T5-L5

Pre-op MRI showing the destruction that’s already taken place and that it’s begun to destroy a bit of T11. The disc there was a gooey mess. All images are mine and to not be used without immediate approval by me or someone related on my behalf.

My current post-op view of my fill spine including all spine with screws, rods, and more. All images are mine and to not be used without immediate approval by me or someone related on my behalf.

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 19/05/2025

A post-op update is needed over here. I’ll be back soon to add one. Side tracked by an unrelated to my #IBD or #ostomy surgery with a severe and extremely debilitating/painful {renal?} infection. #ThoracicOsteomyelitis

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 20/03/2025

7wks s/p #IBD #ostomy new stoma A better update pending, but this one can be huge and for those that know me and/or hamantaschen. Showing note because it’s part of my authenticity during recovery & this crew has helped hold me to get me this far. Brought to you by the letters DSFR #Purim

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 03/12/2024

v2 #IBDFamily pack! go.bsky.app/JpEspkQ Understanding #IBD & the nuances come via clinician🤝patient teamwork & communication of patient experiences. These have spoken 𝐏𝐔𝐁𝐋𝐈𝐂𝐋𝐘 about living with IBD - umbrella for diseases like #Crohns #UlcerativeColitis Amplify across platforms to expand #IBDsky

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 17/11/2024

Starter packs I’m aware of you might find helpful if you come across my profile. If you find a pack useful, please amplify & on other platforms for the broader community. IBD IBDFamily: go.bsky.app/9sySUqv IBDsky: go.bsky.app/CuwqDNF IBDologists: go.bsky.app/JShNP99 2/4 #Surgsky #MedEd

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 03/03/2025

Including missed updates 1 Month s/p #IBD op (authentic): ✔️Leaks ✔️Tears ✔️Hope ✔️advance foods 02/22: Started day with good friend sending pic IYKYK & another sending a heartfelt note - began hype to head to Ohio Thankful friend flew LGA 🔁 CVG - flight was rough physically/emotionally, but I made it

Post-op Day 16: walk in clinic because this cough is misery on my fresh incisions. I’m the one who went in long pjs.
Likely beginning of bronchitis which should be outlawed the minute you have a fresh midline cut. Coughing still, but will be fine.
Neg flu
Neg CV
Neg Str

You too could’ve seen this firsthand “live” authentic side of me to my colorectal surgeon on post-op day whatever today is 16/17?
•Recent extensive #IBD abdominal surgery with sternum to pubis midline incision
•Recent maneuvering of previous stoma & suture new stoma
•TPN during post-hab
*precautions: slowly advance oral intake, scenic walk to loo, cough a few times a day to keep gunk out of lungs despite coughing & sneezing being miserable - sometimes a pillow helps, keep an eye on output (fluid loss)

Bronchitis: coughing, hacking from deep within beyond the normal post-op wimpy coughs to get any gunk out, wince in pain while trying to catch breath from cough
☝🏽Check please

Frisch’s big boy in a baseball uniform holding a burger and running bases. “Even better at the ballpark”

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 07/02/2025

Blurry eyes. It’s surreal I’m finally on this side of surgery recovery. Major educational needs exposed & when I’ve recovered more, you better believe I’ll work to rectify so others don’t lose >10yrs to #IBD gaslighting… plans being discussed. Really thankful & grateful to CRS TEAM #Ostomy #PSC

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 24/01/2025

#IBD/#Ostomy Surgery countdown to relief: 🖐️ 5 days. 🙌🏼 Coming soon. Long and storied history of this TPN and RN debacle, but being an informed patient can come in handy.

Be her peace. That girl is tired of pain.

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 17/11/2024

GIsky & Liversky: go.bsky.app/8Pho2tp GI & Liver 2: go.bsky.app/VGyLKjR GI Research: go.bsky.app/AHpSAzx Ostomy: go.bsky.app/LYbv12w Peds GI: go.bsky.app/6AQFsXL PSC: go.bsky.app/6hLJsJT 🩺 All med: go.bsky.app/Qg2TA9p 🧠 Clinic neuropsych: go.bsky.app/8fgyJiS Women clin psych: go.bsky.app/SsNPcGP 3/4

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Kyle Swanson, MD, FAANS, FCNS @kiswanson.medsky.network · 17/11/2024

Added to go.bsky.app/DvGjDh6

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 21/11/2024

Search starter packs: blueskydirectory.com/starter-pack... Feeds of interest to pin: Gastroenterology: bsky.app/profile/did:... IBD posts: bsky.app/profile/did:... medsky: bsky.app/profile/did:... Academic Journals - Med Feed: bsky.app/profile/did:... 7/8

blueskydirectory.com

Bluesky Starter Packs - Bluesky Directory

Browse a list of Bluesky Starter Packs. Discover and connect with your community on Bluesky

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 21/11/2024

🦀 Oncology: go.bsky.app/GKXp9Fy Onc Nurses: go.bsky.app/28PvdDE 🔪 Surgeon: go.bsky.app/JhPwuUd Surgsky: go.bsky.app/BZU8RtG 📚 Academic Journals - Med: go.bsky.app/FcArK3K Disability advocates: go.bsky.app/NWUGiEN DisabledInSTEM: go.bsky.app/SwJ4rFX 6/8

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 21/11/2024

More #MedEd packs I’m aware of/been sent related to my community interests. If you find a pack useful, pls amplify/share on other platforms for broader community. 🧠 Gastropsych: go.bsky.app/9gx9REd 🔬 IBD research: go.bsky.app/9UXtjWW 🧑‍⚕️ Nursesky 1: go.bsky.app/8ZMxNSz RN 2: go.bsky.app/63iHmya 5/8

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 17/11/2024

Watching #IBDEd #GIsky #IBDsky community coming together is fulfilling. Please keep an eye on starter packs as they continue to grow. The cap is 150 per, & I know those adding are doing so without bias, while staying on topic, & balancing work 🔁life. Please remember to include patient’s voices 1/4

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Brian DeViteri @bsbeamer.bsky.social · 16/01/2025

Friendly reminder: backup your important data. Cloud copies can be great and easy for some, but a physical clone is what will get you back up and running faster. At least get a USB thumb drive for your phone and backup photos/video. Clone your computer at least once a month to an external drive.

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 12/01/2025

Who’d have thought that before the current apocalypse (snow, Cold, Fire) there was still a TPN shortage from hurricanes. Not only that, the RN’s licensed to administer TPN when finally finding a vendor is even harder! 😩 Just trying to do all of my pre-op for best outcome. #IBDsky #ostomy

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 05/01/2025

These Amazon “knockoffs” you don’t know you’re even getting when you’ve checked out the seller… 🧘‍♀️ Frustrating reading directions that were obviously copy/paste by AI and not edited. They don’t make sense. 📏Post-op pjs? Who knows what kind of fabric actually shows up & will it fit 3 people or toe?

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 29/12/2024

Prepping for my upcoming #IBD surgery is an emotional roller coaster. I’m finally filled with hope for any relief after numerous years of utter pain, misery, frustration, & anguish. I’m scared, but holy heck it’s finally happening in January. #ostomy

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Nature Portfolio @natureportfolio.nature.com · 18/12/2024

One of the biggest questions we get is when will our journals be here. We thank you for your patience. You can now follow our journals with this starter pack!

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El Principe del Sur @iamrichaun.bsky.social · 11/12/2024

And Black Men 35+, schedule that colonoscopy. It’s necessary and can possibly save your life. It saved mine.

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Erron J Maxey @erronmaxey.bsky.social · 08/12/2024

Day 5 of IBD, Colitis & Crohns Awareness Week #IBDAwarenessWeek! The biologic I use every 2 months to help manage my Crohn's is Stelara. Humira failed me, now my symptoms died down - thank goodness! Management allowed me to play pro basketball for 20 years! #IBDSuperhero #PerianalIBD #Athlete

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Erron J Maxey @erronmaxey.bsky.social · 08/12/2024

Day 4 of IBD, Colitis & Crohns Awareness Week #IBDAwarenessWeek! Exercise is an important part of my lifestyle & helps me control my Crohn's disease. However, exercise + diet + Stelara injections allow me to have an active lifestyle while keeping me in remission #CCAwarenessWeek #Crohns #PerianalIBD

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Atoosa Rabiee @atoosarabiee.bsky.social · 06/12/2024

Are you looking to improve your mentorship skills? Or wondering how to how to build an awesome mentorship team? Join the fall plenary. Open to all AGA members and any GI/Hep fellow. 👇🏼 #Liversky #Gastrosky amergastroassn.wufoo.com/forms/z6mjkk...

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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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Fedica @fedica.com · 28/11/2024

Fun Fact: You can tag accounts on #Bluesky through the free scheduler in @fedica.com! While names don’t auto-populate just yet, tagging is fully supported. (names are case sensitive!)

a meme of liam neison on the phone with the famous line of "I will find you" but the caption write: idk who tagged me... but I will find you. How fun, how quirky, teehee, tag Liam for a fun surprise!

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 03/12/2024

Anyone on nadolol / corgard and affected by some shortage? I’ve been on it for many years and haven’t faced a shortage, but on many other beta blockers I’ve been in CCU. *looking for Rx info, not dx* #Cardiosky #Pharmsky #Medsky

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Altmetric @altmetric.com · 03/12/2024

BLUESKY MEGA-THREAD Altmetric is thrilled and also LITERALLY RELIEVED to officially announce: We are now tracking research attention as it happens on Bluesky! We have been picking up posts on the site since late Oct. Our team is on Bluesky all day answering questions. Let's get into it!

Blueksy Mentions are now in Altmetric.

It's been 84 years meme

#AcademicSky #HigherEd #MedSky #HMSky #Altmetrics #Medlibs #Metascience

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Bluesky Safety @safety.bsky.app · 29/11/2024

1/ With more users joining Bluesky, we know how important it is to identify which accounts are real. Users deserve confidence that the accounts they interact with are authentic. Sharing some details about our impersonation policy 🧵

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Rod Rahimi @rodrahimi.bsky.social · 15/11/2024

Wonderful to see the #immunology community growing here. The first starter pack is full (they cap at 150), so I created a second one. Let me know if you'd like to be added go.bsky.app/PY5tCas go.bsky.app/FmERUoD

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Memento (spooky) Morty 🌙 @mementomorty.bsky.social · 30/11/2024

Online friendships are weird because you can be a mutual with someone for years, never meet them in person, then truly feel happiness for them when something good happens in their life.

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Mark Rubin @markrubin.bsky.social · 11/11/2024

🦋 New to BlueSky? 🧪 Interested in science? 👀 Wanna find posts by scientists in specific fields? 📃 Here’s a list of +220 science-related feeds and their associated hashtags. #AcademicSky #PhDSky

docs.google.com

BlueSky Science-Related Feeds

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Baja ⭐ @baja.bsky.social · 30/11/2024

🔖BOOKMARK TUTORIAL WITH @getdewey.bsky.social ! 1) First make an acct, it will say premium trial but it will NOT Charge you! 2) Get the extension, this will not work on mobile webpages! So Be sure to be on a PC! 3) Connect your Bsky, Refresh and you'll see a purple bookmark button! BOOM!

Browser extension for dewey for download

Top Right of posts will be a bookmark symbol that is purple you click those to bookmark

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Eb @ebthen.bsky.social · 14/11/2024

If you're seeing encouragement/demands to do alt text and you're overwhelmed or confused about how to do it and you're worried you're going to do it wrong... this thread is for you. First: prompt questions to get you started.

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Heather Yeo MD @heatheryeomd.bsky.social · 26/11/2024

Please follow and help me compile a list of surgery and related journals. go.bsky.app/JTrsF1L

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American Gastroenterological Association (AGA) @amergastroassn.bsky.social · 01/12/2024

We stand with IBD warriors and caregivers to make #IBDvisible during #Crohn’s and Colitis Awareness Week. 💜 #CCAwarenessWeek

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Laura T @lauraellyn.bsky.social · 24/11/2024

There is a lot of variation between docs on this My preference (I’ll post the slide later) Immediate biologic if: —> 2nd resection or more —> complicated disease (fistulas and abscesses) —> aggressive disease (rapid progression despite previous biologic therapy) —> smoking

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Adam Riha @adamriha.com · 26/11/2024

If you want bookmarks on Bluesky Use the 📌 emoji in your reply, then use this feed to find those bookmarks bsky.app/profile/jaz....

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Hank Green @hankgreen.bsky.social · 29/11/2024

good.store

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Joshua Erlich @joshuaerlich.bsky.social · 29/11/2024

if anyone knows about great Black Friday deals that don’t involve companies like Amazon, and especially do include deals very small businesses or individual, drop them here.

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Hank Green @hankgreen.bsky.social · 28/11/2024

📢 📢 📢 @austinwitherspoon.bsky.social created a Bluesky notifications app! Android is still on the way, but the AppStore approved it today!! apps.apple.com/us/app/bluen... Just put in your handle (in settings) and then you can add accounts you want notifications for from your follow list.

apps.apple.com

‎BlueNotify

‎Get push notifications when the people you follow on Bluesky post something. No password required.

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · 27/11/2024

#IBDFamily p1 is almost full & starting p2!! These are who’ve spoken 𝐏𝐔𝐁𝐋𝐈𝐂𝐋𝐘 about being in these “life scenarios.” IBD: go.bsky.app/9sySUqv Ostomy: go.bsky.app/LYbv12w To expand the network: Pls let me know if someone should be added & DM if you’d like to be removed. #Crohns #UlcerativeColitis

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