Ankylosing Spondylitis?

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Regular Member

Date Joined Nov 2007
Total Posts : 497
   Posted 2/2/2009 12:33 PM (GMT -7)   
I hope I am just overly worried, but ever since I got off prednisone, I have had severe pain in my lower back.  If I sit still or lay down for too long, it hurts to get moving again.  I feel very stiff and sore.  Also, my right hip hurts when I walk on it and I limp slightly.  It hurts my lower back to sit up straight and it is more comfortable to sit hunched over. 
I had an x-ray about a year ago to check for Ankylosing Spondylitis and it came back as normal...I have read, though, it can take 8-10 years for it to show up on x-rays. 
For anyone here who has Ankylosing Spondylitis, can you please let me know what your intial symptoms were and what you are going through now?  Thanks so much!

Pamela Neckpain
Veteran Member

Date Joined May 2008
Total Posts : 1821
   Posted 2/2/2009 12:52 PM (GMT -7)   
I have read Anklyosing Spondylitis on my charts (somewhere) I have no idea
what it is or what it feels like. I think I'll look it up.

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.

Forum Moderator

Date Joined Nov 2003
Total Posts : 7119
   Posted 2/2/2009 5:40 PM (GMT -7)   
My initial symptom was disabling pain in my right hip and very low back pain. The area of my back that hurt was right where the indents are above the buttocks. That is the area of the SI joints. Since then I have had two flare ups of the SI joints that were 10 times worse than the first. Extreme buttock pain radiating down my legs. Unable to bear weight on the legs, bend, or sit. For the last 10 years I have stood to watch TV because I cannot sit for any length of time.

You are correct that damage will not show on the xray for some time. That is why MRI is superior in diagnosing sacroiliitis. When I have a falre up my rheumy immediatel orders an MRI. Then off to the spine guy to get my SI joints injected.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

Regular Member

Date Joined Oct 2008
Total Posts : 33
   Posted 2/2/2009 10:12 PM (GMT -7)   
Hi Indigo
I have had Crohn's and AS for about 15 years. The symptoms you describe sound like AS but only a rheumatologist can diagnose. Please talk to your Gastro guy and get the name of a good rheumy. The two do go together. By the way, I am now coming out of a two year remission (due to Remicade and Methotrexate) and although being in active flare again sucks... there is hope. Take Care

Regular Member

Date Joined Nov 2007
Total Posts : 497
   Posted 2/3/2009 1:05 PM (GMT -7)   

Thanks for your replies.

I am on Remicade for the Crohn's, had my 3rd loading dose about a month ago.  Honestly, my Crohn's symptoms are doing much's just this back pain that is not.  sad    I tried stretching last night and moving around and I cannot move like I used to--my back is too stiff and it hurts too bad.  I notice as well, if I try to stretch my back, which causes the pelvis to move forward, it causes more pain in that area.  Could that be a sign of AS too?

I am seeing my Internist this Friday...I am going to ask her what she thinks. 



Regular Member

Date Joined Jul 2007
Total Posts : 280
   Posted 2/3/2009 7:51 PM (GMT -7)   
I just posted a similar question on the Ostomies forum about back pain after my total colectomy. And was told that this can occur even years after the colon is removed. I am diagnosed as "undetermined colitis" although for 15 years I was treated for Crohn's. My surgeon and GI seemed to think that because I had 2 open surgeries, my back was compensating for the muscles they cut. But it's been over a year since my last open surgery and was thinking it should have gotten better by now.

My question is what kinds of treatments are available for this? I am really hoping that I won't have to take the same awful meds I took when I was flaring. And most important, does it work? Are you out of pain?

My family wants to go out west hiking and horseback riding this spring and I can barely stand for more than 5 minutes without my back feeling like it's going to break. I am doing physical therapy now for 2 weeks and haven't noticed any improvement, and thought I would see a chiropracter. But now am thinking that maybe I need to see a rheumatologist instead.

Thanks for any answers.

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08

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