Hi All. Long time, no post. I had been doing relatively well with the Crohn’s for a long time. In fact it’s been the Fibromyalgia which has given me the most trouble of late. This new issue started in March 2017 when my nose swelled up and got all crazy. It was very painful, bleeding at the drop of a hat, crusty, and just awful. Went to the doctor several times and was told that it was rosacea and given short courses of doxycycline and bacitracin to put inside. These treatments made it better but not normal.
Fast forward to July when I went to ENT to address some sinus issues. They put a scope in my nose and noticed a pretty big perforation in my septum. Big enough that the doc actually asked if I had a problem with cocaine! The answer, of course, was uhhh…no. The ENT Docs told me I may have Wegner’s Granulamatosis or it’s new name: granulomatosis with polyangiitis (GPA). Oh good, I thought a new disease for my collection! I was then referred to Rheumatology (still waiting for that appt). Luckily, I tested negative for GPA and they no longer think I have it. Whew!
Subsequent to that ENT appointment I woke up one morning and my whole face was swollen radiating out from my nose. My face was hot, swollen, very painful, and I was running a fever. I went to my PCP and she rx’d Clindamycin but refused to do a culture, saying it wouldn’t matter. I then was sent to dermatology for rosacea and they finally did a culture. It turned out to be Staph that was resistant to Clindamycin. They switched me to Levaquin and it got better. My face went down, I was able to go on a birthday camping trip and all was good. I thought.
about three weeks later, I woke up with the same facial swelling. Went to my PCP, and I was back on the Levaquin and I was given a shot of Rocephin. Next morning it had gotten worse so my doc recommended the ER. I waited in the ER to be seen for 6 hours. When I was finally seen, something that took another 5 hours, I was given a bag of Vancomycin, they added oral Bactrim and sent me home. I got better…for about a week.
Now we’re to last Monday; I woke up with swelling again and immediately went to my PCP. I, frankly, wanted to be admitted to the hospital for IV Antibiotics. I had MRSA in 2003 and it ultimately required a PICC line and several weeks of twice daily IV Antibiotics at home. It was a long process to get better last time; I was afraid that it would be the same this time. My PCP disagreed and I understand her reasoning; if I am still responding to oral ABs then moving to the IV too soon eliminates other options down the line. I was put back onto Levaquin and Bactrim together. Forward to today, my face is stable over the last two days and doesn’t appear to be getting worse, but also doesn’t seem to want to get better. My Primary finally agreed to send me to Infectious Diseases (as recommended by my GI) and I’m waiting for that referral now.
I spoke to my GI and he said I cannot take my 6MP or Simponi, which I would be taking on the 26th. He wants me seen by Infectious Diseases immediately. I’m really frustrated that I keep getting staph infections and cellulitis in my freakin’ face. Now it affecting my ability to treat the IBD. I’m terrified that I the Crohn’s is going to come back if I cannot take my meds. I have been in remission for a few years now and I’d really like to stay that way but MRSA is really harshing my remission buzz. I mad that there’s now a darn HOLE in my nose thanks to the staph. I’m just…tired. Thanks for any support you can offer and for reading this far.
3-9-10: Total proctectomy and Sigmoid colostomy
On: Simponi, 6MP, Cymbalta, , Gabapentin, doxy (rosacea), synthroid, iron, multivitamin