As another change is rolling out here & I’m using my once-fav place less, I’m re-upping the below. Grateful for 12 years of people, learning, programs, laughs, wisdom, & friendships. We’ve been a part of history🙏🏼 Remember: INCLUDE patient’s voice #GITwitter #TillTheWheelsFallOff

Recovery update #IBD #Osteomyelitis Today/week I double down on my 3rd point below. I’m reminded the very humble @SchwartzbergMD & @FezaRemziMD saved my life many times in ‘25 Fight for what you believe & listen to all sides Patients deserve compassion Be a knowledgeable Pt

Where have I been since IBD surgery? I broke my back - ICYMI - Yes, you read that right and it’s still so weird to say, but today I need to outright say it. 🦴Osteomyelitis + recovering from abdominal major surgery is unreal. 🦠🩻

Few details -ADVOCATE as hard as you can even when you can barely breathe; stay involved/informed on your body’s state -SPEAK UP to anyone; never know who’s listening -Intro self to @SchwartzbergMD. He dislikes me saying: This man & his mentor FR have saved my life >4 times 2025

There’s truly some people I couldn’t have done any oz of this w/o 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. @FezaRemziMD https://t.co/OxYjp6obTe

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 - ID undertreated. Led to extensive surg of FULL spinal fusion T5-L2

4/4 D/t pain can only communicate when meds allow Yesterday: 22y ileo anniv + gpa’s would be bday & my bro washed hair 1st x in 10d😭Likely his 1st x in 45y *caveat: NOT surg related. Likely asymptom renal infx seated weakest area of T spine - known t spine is bad since I was 13

3/4 Get a CRS that’ll hold your hand for an hr in ED. We deserve compassion. Currently inpatient day 8 Dx: osteomyelitis* - ID said 1 of most painful infx. Cultures neg 5d 🙌🏼 - 6w abx, 3-4w excruciating back pain DC to CT next wk My Drs + sis & BIL literal lifesavers😭🙏🏼DSFRDH++

2/4 With the spike return, I requested cultures & sis STAT. CMP & WBC WNL Cultures growing & fever persist but back randomly became debilitating. Thurs by hair on chin we made torturous LGA flight. Admitted in AM & empiric abx awaiting culture specifics @FezaRemziMD

1/4 UPDATE: s/p 9w Progressing well including facing ARFID head on (it’s hard), multi days a wk of PT (including protocol mentor & I wrote in 2012), etc. 03/27: Out of left field I was down with 103.4 & bone shivers. Protocol’s dc TPN & start fast LR. Broke fever almost full 48h.

Huge gratitude to Andrea at @180medical!! The part “you handhold for others, it’s allowing me to do this for you” still sitting in my heart. My very small circle tries, but unless they’re deep in the field, it’s hard to fully grasp/know all intricacies we need to align for care

Happy belated Purim @FezaRemziMD @DrAnatapia @guthealthmd @AmCollegeGastro @CrohnsColitisFn @UOAA @AmerGastroAssn @IBDgirls @nloganmd @DocCohenIBD @elrets @GastroHealthLLC @dziring @Flaviostein @berinsj @DrRosenIBD @enlightenedlg @bradybolyard @ErronMaxey @GutlessGlamour

7wks s/p #IBD/new stoma A better update pending, but this one can be huge and for those that know me and/or hamantaschen. Showing note bc 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

@DrAnatapia @PerelmansPearls @JohnEbbenMDPhD @GIdietitian @LoriPlung @kristin_gi_rd @dunleavy_katie @FezaRemziMD @marklewismd @GutlessGlamour @Shrouq_84 @getgutsycanada @Neil_J_Smart @Runsforcoffee1 @ibddoctor @Iris_CU93 @UmaMahadevanIBD @aboutIBD @bottomlineibd @Y_ECCO_IBD

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

Update: Making progress sloooowly advancing my diet finding the line between allowance vs my brain. Advancing is slower to include foods I haven’t had in years or I’d be writhing in pain &/or vom Bonus⬇️immune sys: bronchitis has now added hacking/coughing to freshly cut abdomen

🗓️ 3 months of immense planning & coordination 🧑‍⚕️ Attentive HCP’s ✈️ Flight to NYC 🔪 Extensive #IBD/#ostomy surgery 🏥 5 days in ICU 📆 7 days surgical floor 🕰️ Additional careful planning 🏡 Officially continuing very slow advance of diet at my sister & BIL’s

@Sahara88uk @aboutIBD @guthealthmd @stevenbollipo @Neil_J_Smart @SchwartzbergMD @GIdietitian @FezaRemziMD @EdwardLoftus2 @GianlucaPellino @Jonathansegal85 @LoriPlung @IBD_FloMD @IBDSuperHeroes @JohnRTMonsonMD @Runsforcoffee1 @Y_ECCO_IBD @ibddoctor @DrAnatapia @PerelmansPearls

Blurry eyes, but can type a little. It’s surreal I’m finally on this side of 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. Thankful & grateful to CRS TEAM

Furthermore, in early-onset colorectal cancer patients, I see a fundamental misunderstanding between the role of screening vs. diagnostic procedures You do NOT have to wait until a preordained age (whether the cutoff is 45 or 50) to see a gastroenterologist if you are bleeding!

#IBD/#Ostomy Surgery countdown 🖐️ 5 days 🙌🏼 2wks to obtain 24h TPN (shortage of IV bags!), but being an informed patient with a GI who won’t give up can really come in handy. Authenticity: port access & this was a 3 stick-er (it shouldn’t really hurt) #PortsArentTheEasyWayOut