I am new to this site but was finally diagnosed with UC and sacroiliitis in 1984, following years of hit and miss treatments for an unknown autoimmune disease(since age 13).
Steroids and NSAIDS, coupled with facet injections and SI injections kept me functioning. I refused pain meds, unless absolutely necessary, but relied on PT, especially pool therapy, and accupucture. Gentle yoga stretches also helped.
In 2003 I began remicade infusions and although the UC and SI inflammation improved dramatically, I developed a severe allergy (hives, then anaphylaxis) then acute pericarditis which was life threatening. More (higher dose) steroids were ordered and once my heart improved, I developed excrutiating pain in my lower back and hips.
Diagnosis--avasular necrosis. I had a fusion at L5 S1, followed by bilateral modified hip replacements in 2006 and 2008. But the UC went into remission for 5 yrs.
Now my right SI joint has flared so I am pretty sure the UC is back. Colonoscopy should confirm and if positive, I will try another TNF med since I can never take steroids again.
During the past 27 years of living with this, I have learned the following:1) keep moving as much as possible, any way possible. Stretching HELPs and any strength exercises for your core will take pressure off the SI joints. I would sometimes take pain meds to get through a workout.
2)Pool therapy, whirlpools, anything with hot water helps. Follow that with cold gel packs. Alternate with more moist heat.
3) TNF's work but use caution and make sure you are being closely monitored. If itching or hives become a problem, stop. Your system is rejecting them.
4) Use steroids with extreme caution and be prepared for the potential necrosis.
5) Use alternatives--accupuncture, massage, pilates are excellent.
I have been told that surgical fusion of the SI joint is available but very very complicated and painful. (Can't imagine more pain) Also the nerves can be cauterized but it's dangerous. Too dangerous for me.
In my case, there is a direct correlation between the SI pain and inflammation and active UC, even if the UC isn't symptomatic.
You have to fight this every step of the way. With time, the joints will fuse and the pain subsides. (I even had one MD tell me that if I had my entire colon removed, the SI pain would end.)