Many IBD sufferers also deal with sinus polyps. I developed extreme sinus issues a decade before my colectomy/colitis. Like, debilitating type nasal allergies (not really an allergy) and blocked, inflamed sinuses. I have not been able to smell or taste for 18 years due to polyps and inflammation in my sinuses. They only thing that helped was prednisone, which I would take 1x a year around the holidays just to enjoy eating. I have tried everything. I’ve had four polyp removal surgeries to no benefit. They just grow back. I know now, this is due to MCAS and histamine intolerance. Out of desperation to smell and taste again, I tried Sinuva; they are these tiny bird cage looking stints made out of hardened mometasone furoate that get placed up into your sinuses in hopes of keeping them open and delivering a low dose of mometasone furoate to the lining. #fail. #expensive.
After three months, I hacked them out while driving (they are made to fall out or be removed at three months). The problem was they tiny cage design just catches all your snot so you STILL can’t taste and smell. Anyhow, it was either back to budesonide respule rinses (which never did much) or do nothing.
My doc and I decided to try mometasone furoate in powder form. You get it compounded from a pharmacy (I use Advance in Pennsylvania). They send it to you in capsules, you break the cap open and use in your saline rinse (.6mg). After using it just TWO days b.i.d. (and now for FOUR weeks), I can smell and taste again and have ZERO nasal inflammation. It’s like a miracle sauce for my sinuses. It’s better than prednisone ever was. And….just $46 for two month supply. It’s possible to use it long term as well. I’m now using it q.d. and still have the same benefit. Just wanted to pass this on in case anyone else has suffered as much as me with your sinuses!! Be well!
