Empowering Patients,LLC • Alison
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empoweringpts9.bsky.social
Empowering Patients,LLC • Alison
@empoweringpts9.bsky.social
1.1K followers 660 following 81 posts
👋🏼advocate (1° #IBD #Crohns #UlcerativeColitis #ostomy) • ALWAYS learning #healthcare system while fighting own • Bridging communication between clinicians🤝patients • Sports~Buckeyes🌰, Reds, Bengals • #GIsky #Gastrosky #IBDsky
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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Oct 18
👋🏼 Hi! I’m one of many that’s dabbled here & still trying to find my #GI / #IBD / #Ostomy people & beyond.

If you’re from the #IBDFamily / #OstomyFamily or I *should* know you, please don’t hesitate to wave - heck, anyone friendly, come wave.

Accepting tips to populate my feed(s). 🙌🏼 Thanks!!
empoweringpts9.bsky.social
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 🦠
August 24, 2025 at 5:01 PM
empoweringpts9.bsky.social
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.
June 28, 2025 at 5:14 AM
empoweringpts9.bsky.social
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
May 19, 2025 at 3:40 AM
empoweringpts9.bsky.social
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
March 20, 2025 at 11:57 PM
Reposted by Empowering Patients,LLC • Alison
empoweringpts9.bsky.social
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
December 3, 2024 at 6:42 PM
Reposted by Empowering Patients,LLC • Alison
empoweringpts9.bsky.social
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
November 17, 2024 at 5:25 PM
empoweringpts9.bsky.social
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”
March 3, 2025 at 2:49 AM
empoweringpts9.bsky.social
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
February 7, 2025 at 2:07 AM
empoweringpts9.bsky.social
#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.
January 24, 2025 at 5:12 AM
Reposted by Empowering Patients,LLC • Alison
empoweringpts9.bsky.social
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
November 17, 2024 at 5:25 PM
Reposted by Empowering Patients,LLC • Alison
kiswanson.medsky.social
Added to go.bsky.app/DvGjDh6
November 17, 2024 at 6:28 PM
Reposted by Empowering Patients,LLC • Alison
empoweringpts9.bsky.social
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
Bluesky Starter Packs - Bluesky Directory
Browse a list of Bluesky Starter Packs. Discover and connect with your community on Bluesky
blueskydirectory.com
November 21, 2024 at 7:46 PM
Reposted by Empowering Patients,LLC • Alison
empoweringpts9.bsky.social
🦀
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
November 21, 2024 at 7:46 PM
Reposted by Empowering Patients,LLC • Alison
empoweringpts9.bsky.social
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
November 21, 2024 at 7:46 PM
Reposted by Empowering Patients,LLC • Alison
empoweringpts9.bsky.social
Pain Science & Med: go.bsky.app/4r8uAeG
4/4+

@ebtapper.bsky.social
@edelblumlab.bsky.social
@ibdgastrodocsg.bsky.social
@lauraellyn.bsky.social
@drzoffness.bsky.social
@jasonsilverman.bsky.social
@kiswanson.bsky.social
@cdelawalla.bsky.social
@katecoldwell.bsky.social
@desmondwarren.bsky.social
November 17, 2024 at 5:25 PM
Reposted by Empowering Patients,LLC • Alison
empoweringpts9.bsky.social
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
November 17, 2024 at 5:25 PM
Reposted by Empowering Patients,LLC • Alison
bsbeamer.bsky.social
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.
January 16, 2025 at 1:15 PM
empoweringpts9.bsky.social
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
January 12, 2025 at 10:42 PM
empoweringpts9.bsky.social
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?
January 5, 2025 at 1:25 AM
empoweringpts9.bsky.social
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
December 29, 2024 at 10:02 PM
Reposted by Empowering Patients,LLC • Alison
natureportfolio.nature.com
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!
December 18, 2024 at 2:57 PM
Reposted by Empowering Patients,LLC • Alison
amcollegegastro.bsky.social
Welcome to #GastroSky #LiverSky! New around here?

This #ACGfamily "Starter Pack" includes gastroenterologists, hepatologists, endoscopists, and patient advocates.

Let us know if you want to be added to the list!

#ACGfamily and friends on #BlueSky
🔽🔽🔽🔽
bsky.app/starter-pack...
December 12, 2024 at 9:10 PM
Reposted by Empowering Patients,LLC • Alison
iamrichaun.bsky.social
And Black Men 35+, schedule that colonoscopy. It’s necessary and can possibly save your life. It saved mine.
December 11, 2024 at 12:43 PM