Stumped re: my rare issue -can anyone help?

Hi everyone! Posting and hoping I can find some insight into my problem. Just some background info: I was diagnosed with a mild case of UC about 3 years ago. I've tried a bunch of different meds and have never gone into remission. As a result, my doctor and I decided to stop all meds since nothing was working and to see how I'd do without them.

about a week before stopping all my meds, I developed a terrible sinus infection. I don't know what it was that led to what happened next, but about two weeks into my sinus infection I developed an abscess in both sides of my nostrils. Once I noticed the abscess, I immediately had it drained at the clinic and stayed overnight at the hospital. Unfortunately, it grew back the next day and I underwent surgery to remove it again. Fast forward a week and it grew back yet again, so I had surgery #2. Thankfully, the second surgery was more successful and after a month in the hospital I am finally home... still healing but things are looking much better. Every ENT I met with was completely stumped with my issue. Even my gastro was shocked that I developed something so rare. The ENT's all seem to think it's related to my UC and low immune system.

Now, the thing is, after my second surgery, I woke up with intense pain in my collar bone/clavicle area to the point where I could not get out of bed, could hardly walk, feed myself or even move. It went on for over a week because every nurse insisted it was muscular due to my positioning on the operating table. Then when a doctor finally came around they told me I had this extremely rare form of arthritis called SAPHO Syndrome. Another came around and told me I didn't have arthritis. I'm just so lost! It's been 3 weeks and though the pain has lessened, I still have a lot of discomfort in the area, and it's starting in my chest as well.

I'm here because sometimes forums like this have more answers than doctors do. They were stumped about the abscess in my nose saying it's extremely rare and I was a difficult case, and now I don't even know what to think about my collar bone pain. Has anyone ever experienced this or something similar? Has anyone ever developed an abscess due to their UC? Or collar bone pain/arthritis?

I have doc appointments coming up because the collar bone pain is not going away, but I figured it wouldn't hurt to get insight from anyone here. Thank you in advance!

are you on prednisone?

it has many side effects... some that don't get the hupla but are real and very bad.... myself I have had ruptured bicept tendone(now popeye arm) that I give it credit for... as well as torn rotador cuff. three of four off the bone... recovering from surgery for that at this time but another side effect that is not