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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 linktr.ee/empoweringpts9

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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!!

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Aug 24

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 🦠

Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Jun 28

Please check out Dr Oppenheim’s brief case report on using AI for my complicated case.

Caveat, from what I know, Dr O’s report is the first of many to come not just by him. I’m very grateful for him lending any help and knowledge throughout all of this

Oppenheim: www.linkedin.com/posts/michae...

Computer Vision in Healthcare: Seeing the Whole Picture | Michael Oppenheim

Computer Vision in Healthcare: Seeing the Whole Picture I was recently asked by a social contact to opine on a (already diagnosed) case of a bacterial spinal infection 2 months after abdominal surger...

www.linkedin.com

Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Jun 28

There’s truly some people I couldn’t have done any drop of this without or continue to move to next step. I’m currently in a rehab facility & haven’t been in my bed in months.
Only some are on SoMe, but you surely learn who’s really there for you. @schwartzbergmd.bsky.social
@GIdietitian.bsky.social

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Jun 28

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 · May 19

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

Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Mar 20

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 · Dec 3

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 · Nov 17

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
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#Surgsky #MedEd

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Mar 3

I owe a gratitude of #IBD thanks @gidietitian.bsky.social @schwartzbergmd.bsky.social @crohnscolitisfdn.bsky.social @myueg.bsky.social @geteccu.bsky.social @uoaa-ostomy.bsky.social @nutritionaltherapyforibd.org @bottomlineibd.bsky.social @asgeendo.bsky.social @getgutsycanada.bsky.social @aegastro.es

Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Mar 3

We will be formulating some papers after all we’ve seen and learned from this as an “elder” with #IBD @amcollegegastro.bsky.social @amergastroassn.bsky.social @collegeofsurgeons.bsky.social @ibddoctor.bsky.social @ibd-afzali.bsky.social @facs.org @medicine.stitches.today @ibdgastrodocsg.bsky.social

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Mar 3

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 · Feb 7

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

Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Jan 24

#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.

Reposted by Empowering Patients,LLC • Alison

Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Nov 17

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.social · Nov 17

Added to go.bsky.app/DvGjDh6

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Nov 21

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:...
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Bluesky Starter Packs - Bluesky Directory

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

blueskydirectory.com

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Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Nov 21

🦀
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 · Nov 21

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 · Nov 17

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

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Reposted by Empowering Patients,LLC • Alison

Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Nov 17

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
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Reposted by Empowering Patients,LLC • Alison

Brian DeViteri @bsbeamer.bsky.social · Jan 16

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 · Jan 12

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

Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Jan 5

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?

Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Jan 5

Thanks so much Hannah! I appreciate it so. Miss you. 💕

Empowering Patients,LLC • Alison @empoweringpts9.bsky.social · Jan 5

Thanks Mark. 💕 I have high hopes it will.