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Really incredible paper and a nice breakdown of their work by James Lee in this thread. Exciting times in the world of IBD. #IBD

Anyone have IBD and have/had cancer that could talk to this person? They have thyroid cancer and severe crohns with an ostomy. #IBD #Crohns #Cancer

On June 4th my adoptive mom / Grandma passed away. She was battling liver disease. She adopted my sisters and I when we needed her most. She was one of the best humans I know. I’m glad her suffering is over but my heart is broken. I will miss her for the rest of my life.

Today we say goodbye to my Meme, my adoptive mom/grandma.

Someone recently asked me what diet I’m on because I’ve lost so much weight. I said it’s called “Crohn’s Disease” #IBD #CrohnsDisease

Watching the Olympic gymnastic trials and I’m always amazed at these athletes. What they do is genuinely insane. But also as someone with a bone disease it gives me anxiety seeing what they do and knowing I’d break every bone in my body if I even tried to do a front flip 😂

Always lovely when someone messages you asking if a podcast episode is about you and you have never heard of it and lo and behold the whole episode is about your medical story.. with some creative liberties taken and I’ve never been contacted by said podcast….

Maybe it’s because of my cardiac arrest, but I don’t understand why patients get upset when I say their symptoms are due to aging. 95% of what I diagnose is because we get old. I always bring it up as delicately as possible, but like do you know how lucky you are? I see patients

There’s a lot the chronic illness community can learn from Sunisa lee and Simone Biles as deal with mental and physical health problems yet faced them head on to achieve some amazing things at this Olympics. It’s about getting back up and taking care of yourself first.

Day 5 post op. Pretty tough day. My leg looks brutal, and just a lot of pain. As to be expected at this point. Post-op appointment yesterday was good, had a skin hematoma that needed to be drained which sucked. I’ll be in an immobilizer brace another week, the 12-13 stitches on

Also, I hate the post-surgery stomach issues. All the meds, pain meds, stress from surgery really gets the Crohn’s pissed off. #IBD #Crohns #surgery

Dealing with a surgical site infection in the incision from my most recent surgery. This is the 3rd time I’ve had one of these. Hoping oral antibiotics clear it up so I don’t need anymore surgery or PICC line like the last two times.

How’s everyone doing? Not on here much these days.

Last week the FDA approved Johnson & Johnson’s TREMFYA for Ulcerative Colitis! The first dual action IL 23 Inhibitor for UC! The data looks really good and this is exciting for UC patients to have another great treatment option. #IBD #UC #Tremfya jnj.com/media-center/p…

Yesterday I had my 27th surgery related to my rare genetic disease. Been through this many times but it’s never any easier. Surgery went well. My arm is very sore. #chronicillness #hypophosphatasia #raredisease

Here in Washington DC attending the NORD Breakthrough Summit. Excited to hear from the FDA/NIH and other patients this week. #NORDSummit2024 #raredisease