Sacroiliitis - Anyone else?

Thanks Paula.

Hi Lu2011. I have problems with my SI joint also. I see a chiropractor who adjusts it when needed. He also does a therapy similar to TENS called interferential which I much prefer. If I'm having a real bad time he can also use a cold laser or ultrasound on it. I still have bad moments with it but am pretty darn functional now with minimal pain for the most part.

Home therapies I do include using moist heat or ice depending on which seems to work better at the time. I stretch every morning before I get out of bed and before bedtime. I do have orthotics but have bad feet. I take no meds for it because I can't tolerate pain killers.

I would try to be as active as possible even if it does hurt. As you already know sitting for too long is very bad. Even if you get up and walk around for a few minutes at a time should help. Try to breathe too. It seems like people hold their breaths when in pain but breathing deeply through it helps to relax the muscles and you.

Wish I had more tips for you but will post them if something more comes to mind. Please take care but keep moving and breathing. Lee

Lu2011,

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.)

Good luck.

 

Hello Kinzie,
Thanks for your post.  Am sorry you also suffer from UC and sacroiliitis.  Did you find PT, pool therapy and acupuncture helped?  I am currently trying PT and acupuncture.  I did also do a few hydrotherapy sessions but found they harmed more than they helped so have stopped those.  Having said that, I also find the PT exercises make me feel worse the next day, but they say to keep doing them.  Had first acupuncture last night.  The idea is strange to me, but I'm despearate.  They also commented that my muscles are super tight and my spine is curving so they recommend both for treatment.

Am so sorry that the infusions helped with the UC and SI, but you had a sever reaction and had to stop. It's awful how a med can help one thing but cause other issues.

am sorry as well that your UC is back (I have a jpouch so no longer have UC but do get the occasional pouchitis).  I hope the TMF meds help.

Yes, I find that if I stay still, especially sitting, then it causes a flare up with my Si joints (sharp shooting pain down my leg).  But if I move too much or am on my legs too much, then it also causes a flasre up.  Can't win!

For me, I do take celebrex, but only when having a really bad day as it can trigger pouchitis.

The surgery sounds scary, esp with the risks to the nerves.  My rheumatolgoist also says there is a relationship between the UC and sacroilitiis and always asks how my digestive system is when I see him. 

As for having your colon removed removing the SI pain, I'm sorry to say but I don't believe it.  My colon was removed at 15 and my SI joint issues started in my mid 20s and have gotten worse since then (I'm 38 now)

Good luck to you too.  I hope that you do get relief and your UC and joints go into remission.

Hello ScreamingEagle.  Am so sorry that you've gone through survery and it hasn't helped.  At hte beginning of the year I did have SI injections.  For me, I fuond that it helped, but was short lived and less than 2 weeks later, my joints were bad again (I tried exercising though so that may have sped up the process).  Some people do have good results though as everyone is different. 

Another here who has issues with the SI...I too, like Ides, have AS-ankylosing spondylitis-and crohn's (not to mention a liver AI disease too)...Especially since you have UC, I would strongly urge you to see a Rheumatologist to help (there are also arthralgias associated with just with the AI you might have), that doctor can help you find a good solution (ie, I take sulfasalazine, which helps a lot)

Flare ups? Can find no rhyme or reason for flares in any of my diseases...I've stopped trying to figure it out...as to dealing, well I have meds both topical (ie Votaren gel works best for me, but can't use a lot because my liver doesn't like it) and other meds like celebrex (but I have to be very careful with these as they can upset my crohn's) and pain meds...I've even received shots from my doctor which help a lot.(trigger point injections that I get at my rheumatologist)...

Good luck and take care...