03/05/2025
Overdue UPDATE:
3 months s/p / /stoma revision + thoracic osteomyelitis. Buckle up because it’s full & likely missing many, but I’ll pick them up soon.
Starting backwards: I’m fighting thoracic osteomyelitis with every being in me. A few more weeks of abx, then the next step, then I can start to really plan to get back home.
Reiterating: We have zero connection this horrid septic/bone infection is related to my Jan 29 extensive abdominopelvic surgery. The trail’s thought to have started as asymptomatic kidney infx going septic then taking seat in my known weakest part of my spine of T 9-12. No idea however I got onto that plane in Cincy & painfully flew with my sister to NYC that April night, but it LITERALLY saved my life.
Everyone knows although I live a fairly public disease life, I keep a whole lot of my life very private. There’s been a few in my pocket I’ve kept slightly under lock & key that have saved my life now 2 times in 3+ months. Before November I thought of them as friends and colleagues, some leaning more one way than the other, but all deserve public accolades. Although I still have a very long recovery extended due to this severe infection, it’s only fair I share some of my care team for others to be able to receive similar treatment if they’d ever need it. In the words of 1 of them, this is one of THE BEST DECISIONS we’ve made for your disease care in such a long time. Notice he said “we,” and I’ll say over & over, this man means we. When others would doubt me, he’d always say “hang in there,” we’ll get you better.
Cincy Team - Dr. Terry O'Toole - Gastro Health - Ohio almost 14 years running and banging our head, but the biggest is even during my notorious Dr vacays (I get burnt out from constantly seeing clinicians and giving too much attention to my own health), he knew I was willing to try almost anything until I wasn’t (in more recent years when I was getting too worn out). He’s always thought outside of the box along with me when I bring him the latest research he may or may not have seen from researchers I personally know. Along with my years of continuing to keep my medical records, although some years are painfully difficult to reread, I’ve kept them for myself but also I was dx prior to electronic records.
Becka RN - OC. She knew from day 1 of meeting me in January that we clicked and when I was scared, she jumped into action. Can’t wait for the weekend when I finally return.
Being a sometimes over-educated patient can be both scary knowing “too much,” but also intimidating to those learning. I don’t ever want to intimidate someone with any of my knowledge as long as we have the same end goal. I want to learn and be involved in my care, and depending on the day I tend to offer to have anyone interested on the floor to watch me/help me change my ostomy and learn port care. If there’s a resident during the Dr parade that may seem like they have an interest, I make sure it’s known to not hesitate to ask me anything. I oft remind I had to be taught by someone and it’s better to ask than make life harder or let pt lay in own excrement.
The NYC team - Dr David Schwartzberg, Dr. Feza Remzi, their immediate multi-d colleagues at Northwell Health IBD Center Lenox Hill, their Fellows, and residents, and especially the RNs/PCAs. The similar team quickly assembled at Northwell Health Northshore after Schwartzberg met my sister and I in ER and caught everyone up - I could only moan in pain with every breath - no talking, severely thirsty, high fever…
From Remzi running into my sister by chance, infectious disease getting a heads up I was coming, pain management, every resident calling Schwartzberg each shift because if you know DS, he was making certain no meds dropped off or were written differently to not change my regimen by any means. Every resident/Fellow knew to call Schwartzberg immediately - I’ve said I can’t imagine receiving the messages from me he’s received these months, but I follow it by I can’t wait for our convos to go back to our normal random not mainly me and my health. Remzi ordered as many tests as he could for such possible needs since some tests can wait days/weeks for the next open slot. These 2 brilliant minds coming together over me literally in OR (in January) and for this infection, brings me to literal tears. Although like Remzi said my last day inpatient, he can’t wait to go back to Feza/Alison the way we’ve known each other for years.
O’Toole - Georgie’s proud of you. We know it.
NYC - DS, you never gave up on me while knowing I was obstructing every day for ≈6y and fighting against my medical PTSD. Now Remzi and you are giving me a renewed life except with this infection detour.
KI - Everything I’ve told you along with DS screaming ALBUMIN in pre-op photos to you. If you don't know IBD/GI Dietitian, Kelly Issokson, she's the bestestest.
Andy Lair - No matter how old we get, you'll always be my forever PT mentor, and you'll be 35 and I'm 15... yes, say it again.
Repeat after me: ✨✨Get a CRS/GI that’ll show you compassion especially in some of your most vulnerable times of your life. We deserve compassion.✨✨
United Ostomy Associations of America Wound, Ostomy, and Continence Nurses Society - WOCN IBD Social Circle Crohn's & Colitis Foundation American Gastroenterological Association (AGA) IBDSuperHeroes Crohn's and Colitis Canada Dr Anita Afzali American College of Gastroenterology Convatec Ostomy Care US Coloplast Hollister Incorporated Mental Health America American Physical Therapy Association (APTA)
