Posted 8/27/2018 12:31 PM (GMT -7)
TL;DR- looks like I developed nasal Crohn’s after years of Crohn’s remission. Looking for treatment options and support.
I understand Nasal Crohn’s to be pretty rare, but also underreported.
I was diagnosed with CD in 2002. I’ve been in remission on and off over the years and finally had Barbie butt/Ostomy surgery in 2010 which gave me remission for several years.
I have always had sinus problems and had surgery a couple of times for my septum and just a general scraping. My ENT had advised a year or two ago that more ‘general scraping’ surgery is likely to be futile. I was ok living with a never ending supply disgusting muck being produced by my head. All CTs of my sinuses show almost complete opacification.
Cut to June of 2017 and my face swells up on the right side and I’m diagnosed with septal perforation. My septum now has a big hole for no apparent reason. ENT sends me to Rhuem for a Wegner’s workup. It’s negative. I am then in and out of the ER and hospital over the next few months with no one able to tell me why my sinuses are swollen, painful, and full of never ending bloody disgusting swampy snot. My nose is swollen, painful, and gets crusty with deep ulcerations and fissures and bleeds intermittently for no reason.
After a year + long saga of the “what the hell is wrong with me?” California Tour of doctors, I got a second opinion at UCSF and based on the recommendation, my ENT finally just knocked my ass out last Wednesday and took five sinus/nasal biopsies.
The doc just called me and the pathology report from the biopsies says it’s Crohn’s disease.
In my ****ing nose.
What the hell? I’m already on Entyvio after being allergic to Remicade, failing humira, cimzia and Simponi. I had a colonoscopy last month that showed what’s left of my bowel is currently pristine. My nose, OTOH, is a hot, painful mess.
Anyone have Nasal/Sinus Crohn’s? What treatments did they offer? Did they work? Am I just stuck in misery forever?
Pls send soft tissue, puppy vids, and animals that do cute things with their hands.
3-9-10: Total proctectomy and Sigmoid colostomy
On: Simponi, 6MP, Cymbalta, , Gabapentin, doxy (rosacea), synthroid, iron, multivitamin