Sacroiliitis - Anyone else?

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Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 5/27/2011 7:02 AM (GMT -6)   
Hi,
 
I found this site a month or two ago and its' been great.  At 15 I had colitis.  It was so bad that they removed my colon and created a jpouch.  So I no longer suffer, but ahve constant fear of getting Crohns.  My stomach isn't normal and I suffer from the odd bout of pouchitis, but still, much better than colitis.
 
Thought my issues were over until early 20s started getting pains in my legs when sitting.  That progressed to back pain and sometimes shooting pain.  Went through many tests and was diagnosed with sacroilitiis...inflammation of the SI joints.  I suffer from back pain daily (have a desk job and do a lot of sitting...often in meetings where I can't just stand up), to sometimes pinching pain (which I call a warning of a flare up), joint pain and shooting pain when flared up.  Was told the shooting pain is my piriformis muscle inflammed hitting my sciatic nerve.  makes total sense to me and have been wondering for a long time waht that shooting pain actually was.
 
My pain is getting worse and worse.  I can't even exercise anymore which upsets me as I love going for walks and using the eliptical (everytime with the latter, I get  a flare up).  I also folare up if I sit too long, stand too long in one spot, lie on my back too long and move too much.  Can't win.  I also have a 2 year old that still needs lifting so that doesnt help/
 
I've stared PT where they've used a tens machine, have an inflammation cream they use with ultrasound light (and I have some to use at home), ordered orthodics, have a new SI belt, and they recommend hydotherapy plus building muscles and massage.  I also have celebrex to take when needed.  it helps but I have to be careful as it can cause issues with my stomach (pouchitis)
 
So that's my story.  Would love to hear from others in same boat.  What causes a flare up?  How do you deal with shooting pain?  What devices work for you (e.g. orthodics, Si belt, tens unit, etc)?  Do you take meds?  Are you able to exercise?  And if so, what kind?  How do you deal with shooting pain?  Do you do physio?  And if so, what do they do?
 
Thanks in advance. 
Ulcerative Colitis 1988, had colon removed and now jpouch
Now sufer from sacroiliitis and inflammation of piriformis muscle causing sciatica like pain during flare ups. Joints very bad...take celebrex when needed.

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 5/27/2011 11:00 AM (GMT -6)   
Thanks Paula.
Ulcerative Colitis 1988, had colon removed and now jpouch
Now sufer from sacroiliitis and inflammation of piriformis muscle causing sciatica like pain during flare ups. Joints very bad...take celebrex when needed.

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 5/27/2011 12:10 PM (GMT -6)   
 
   Hello Lu2011!
 
         I too, don't know much on the "sacroiliitis", but I did a search on the forum here for you and posted a link below. Please take a peek, and see if there are some post that may help you with your questions about it.
 
    You can also do your own search on just about anything you wish, by clicking on the "Search" button located at the upper righthand corner of this page. Type in your interest, hit the enter button, and wella!....there should be enough reading there for you. wink
 
      Hope this helps!
 
 
        Take care!
 
     SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 5/27/2011 4:04 PM (GMT -6)   
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
Hope and attitude are everything. Never, never, ever give up.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7164
   Posted 5/27/2011 6:28 PM (GMT -6)   
Lu2011,
Are you being treated by a rheumatologist for your SI inflammation? Your history of having UC coupled with SI inflammation is somewhat common among those with inflammatory bowel disease.

I was first diagnosed with spondyloarthropathy. Then it was changed to ankylosing spondylitis when MRIs showed inflammation and fusing in my SI joints. I currently take Simponi, a anti-TNF biologic injection, to keep the SI joint from flaring.

When my SI joints flare I get steroid injections in the SI joints. This is done under xray guidance, usually in the hospital outpatient dept. These injections are a life-saver. I go from being unable to sit down at all, to being able to tolerate over an hour.
Moderator Crohn's disease, Osteoarthritis and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

Kinzie107
New Member


Date Joined Aug 2011
Total Posts : 1
   Posted 8/3/2011 5:41 PM (GMT -6)   
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.
 
 
 

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 8/3/2011 7:09 PM (GMT -6)   
Good evening Kinzie!

Welcome to our CP forum!

Thank you for supporting our members here, but I also wanted to invite you to start a new thread on our home page. Many of the members may never see you here on this thread, so I think you would be best served and warmly welcomed of you start a new topic and introduce yourself there, like you did here.

Also we have a great UC forum, and I we want you to also check out that forum as well. The moderators will assist you there, and are wonderful people.

Again welcome, and we hope to see you on both forums!

Take care,

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 8/4/2011 7:09 AM (GMT -6)   

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.


Ulcerative Colitis 1988, had colon removed and now jpouch
Now sufer from sacroiliitis and inflammation of piriformis muscle causing sciatica like pain during flare ups. Joints very bad...take celebrex when needed.

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 8/4/2011 10:19 AM (GMT -6)   
 
    ....I have found this to be an interesting thread...because I suffer from the "Sacroiliac" joint pain as well. It seems to be a rather large area and quite complex from what I have researched.
 
   My pain is at about the top of the L4-L5...and is pinpointed about two inches out from the center of the spine, and both sides are affected, but mostly the right side.
 
     I did not suffer this prior to my fusion surgery, and became noticable after a few months of healing. So when I'm asked to point to where my back pain is...it really is broad based across about a 4" span of the L4-L5 area. I believe the L3-L4 is starting to bother me as well, and I can point it out to my Dr.....he agrees as to the area, but thinks it may be more of a muscel problem at this time.
 
   At this point, Im doing all I can to protect what little healthy spine I have left. Surgery isn't nearly as inviting as the first time around, and I am wondering if an injection will help the Sacroiliac area?
 
 SE wink
     
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 8/4/2011 11:25 AM (GMT -6)   
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. 
Ulcerative Colitis 1988, had colon removed and now jpouch
Now sufer from sacroiliitis and inflammation of piriformis muscle causing sciatica like pain during flare ups. Joints very bad...take celebrex when needed.

conniebun
New Member


Date Joined Aug 2011
Total Posts : 6
   Posted 8/13/2011 3:39 PM (GMT -6)   
I have SI joint injury,I dug out a tree stump.The only thing that helps me is rest,swimming and the si joint belt,There are alot of belts but I like the blue one..I am going for my first injection next week..After reading all the horror story's on the internet I put it off 2 years..I take Metamucil too..I am 63..You are so young.You say u can walk and do the elliptical.hum..that is way out of reach for me..Swimming is the best..Lap swimming

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 8/17/2011 12:27 PM (GMT -6)   
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...
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