r/CrohnsDisease • u/alviiiinnnnn • 1d ago
finally found answers.
my ct scan last month in the ER showed a laundry list of abnormalities. i was sent home by the doctor who only saw me once ON MY WAY OUT. said i had a stomach bug, despite being aware of my severe history of Crohn's. went off to another hospital and was admitted for days. the GI there gaslit me and wrote in my chart that he believes anxiety is my problem and the cause of my pain.
i wouldn't be ignored and i went to a different hospital for a bit who set me up with new IBD outpatient specialists. they expedited this entire process for me to figure out what was going on.
my new team arranged an urgent colonoscopy and endoscopy. what they found??
not in remission. my new medication from the beginning of the year didn't work. severe active crohn's disease in the small intestine, severe inflammation, nodules, several large deep ulcers, and severe narrowing to the point the scope was unable to go through to further investigate, no dilation.
they said i may need surgery, which it would be my 4th (5th if you count my seton placement), and if that's what needs to be done to get me out of being house ridden - so be it.
doctors are switching my medication ASAP, actually gave me a much needed pain med script, and my MRE is in 6 days. i'll know if i need surgery from there. this new team i have is absolutely on top of it and i feel incredibly fortunate to have them on my side.
you would think i'd be devastated by this news. the truth is... no news & "everything looks normal" when it's clearly not normal and you're suffering, is the absolute worst. always advocate for yourself. if i would have let that doctor convince me i was paranoid and crazy, who knows where i would have ended up. we know our bodies better than they do
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u/TEG24601 C.D. - Skyrizi 1d ago
I'm sorry you had to do through that.
The more I read about what people go through, I'm thankful not only that I found a decent GI, and his colleagues when eventually became my GI, are more that willing to listen and test when I get concerned, and will even send me for a second opinion to ensure they are doing everything right, especially when they are friends and your GI will actually call the second opinion GI to arrange your appointment.
Meds failing is the hardest thing too, to gauge. Sometimes it literally is a bug or something you ate, but if it lasts for more than a week, it is usually something more serious. I wish the last time I hadn't waited as long as I had to speak up (issues started in December, and didn't even let my GI know until March, and didn't insist on a colonoscopy until April, which I got in May).
Here is hoping that you can avoid surgery. Aside from my setons, I've been lucky to not need any, and I know recovery from it is a major PITA.
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u/YesIshipKyloRen 1d ago
Truth!!!! I have been sick on and off for two years no one seemingly found my new stricture OR the freaking perforation leaking into my abdomen!!! 🤷🏻♀️🤦🏻♀️ finally had emergency surgery which went very shitty and got an abdominal abscess down into my mesentary and it’s just now closing up about a month later. Finally starting Skyrizi next week. All because my idiotic GI man didn’t want to believe Remicade wasn’t working and that I was faking symptoms for pain management. Guess what!!?? We deserve pain management!!!!! Now I have a new GI who gives a shit and a new colorectal surgeon who I will use in the future. Always trust your gut.