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Ankolysing spondylitis?

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Posted 1/13/2013 12:34 PM (GMT 0)
Hello there, I am a newbie to this particular forum, I have been posting in other forums over the years. I have recently had major surgery (my last intestine removed due to ulcerative colitis. I spent a few years having remicade infusions for the UC (obviously no longer need them). Just when i thought i could move on without to many health issues .......I now experience pain in my back at night (had a the same pain approx 9 years ago (but it went away). Now it's almost every night....it eases once im up and moving around. I am scared it may be something like ankolysing spondylitis because of the symptoms and unfortunately I have the HLA B27 gene. Does anyone have similar issues or can someone give me advice?
Posted 1/13/2013 1:05 PM (GMT 0)
Hi cfg, Have you brought this up to you GI doctor to see if its related to your UC. So Right now your are on no meds for your UC.
patients like people with Crohn's Disease or UC are always on some type of maintance drugs.
Posted 1/13/2013 8:55 PM (GMT 0)
Get thy self in to see a rheumatologist! A rheumy can evaluate the cause of your back issues and get a handle on it before it worsens. I have Crohn's disease and Ankylosing Spondylitis. The Crohn's is in remission and the AS creates havoc in my body.
Posted 1/14/2013 12:42 AM (GMT 0)
Hello and thank you for replies. The only meds I take now is vitamin D because my large intestine has been removed the uc doesn't exist. I had surgery and loved the thought of no more drugs....The thought of having to take drugs again is really upsetting. I have an appointment with my surgeon who did the operation in a few weeks time. Ill let him know and ask about a rheumatologist. Are there any questions I need to ask that will help. I've had iritis in the past, psoriasis that disappeared over time. Autoimmune diseases certainly know how to attack don't they.
Posted 1/18/2013 1:07 PM (GMT 0)
Hi cfg,

I had the same surgery as you for the UC (have a jpouch now).  I know how you feel...you went through all that and so your health issues should be done with.  Unfortunately, there is a link between colitis/crohns and joint issues.  I had my colon removed when I was 15, with 2 more surgeries a year later and in my early 20s, I started having back and joint pains.  After seeing many doctors, a rheumatologist diagnosed me with sacroiliitis.  I have been checked for ankolysing spondylitis and am monitired for it, but so far, don't have it. You should try and get yourself to a rheumatologist to see what's going on and how to best treat it.  (I know...who wants to go on more meds).  Good luck.

Posted 1/19/2013 1:21 PM (GMT 0)
Thank you so much Lu2011 for sharing your experience. I see my surgeon in a couple of weeks and will certainly be asking questions.
Posted 1/23/2013 7:47 PM (GMT 0)
Good luck cfg. Hope you can get some answers and your pain managed.
Posted 1/24/2013 1:16 AM (GMT 0)
I agree with others suggestions of seeing a Rheumy. I was diagnosed with sacroiliitis in 2007, before I was diagnosed with Crohn's, and if Feb 2012 the diagnosis was changed to AS. Apparently it's a disease that can progress rather slowly. Can you describe your back pain? Mine is lower back, but it started on only one side and I would also have a shooting pain down the back of my leg which I thought was sciatica but it was the sacroiliitis. I am HBA-B27 negative, so I wouldn't stress too much about having the gene. But definitely get your back pain looked in to so it doesn't progress to something worse.
Posted 1/25/2013 10:58 AM (GMT 0)
Hi virtual ..thanks for responding. The pain first started over 10 years ago, then disappeared it almost like kidney pain, then obviously years passed, I was diagnosed with ulcerative colitis and have had surgery. Now the pain is back ..it's lower back pain and is not in any particular spot just aches even at the tops of my butt cheeks ....it gets better once I'm up and moving about. Sometime it takes a long time for it to ease, sometimes it's fine...does this make sense?
Posted 1/25/2013 1:12 PM (GMT 0)
cfg, you can experience different types of pains lasting different lengths with these kind of issues.  With my sacroilitiis, I experience both what you describe and also what virtualterror describes...anywhere from a sore lower back, to SI joint aches to buttock to pinching to shooting pain.  You mentioned you have an appointment with your surgeon (I assume you mean your GI one)...would definitely also try and see a rheumatologist...and one who is familiar with UC as there can be a link.  Good luck.
Posted 1/30/2013 5:45 AM (GMT 0)
Hello there, thought I would post with an update. Saw someone from the surgical team and she suggested a blood test, however I reminded her about the hlab27 gene and she has organised a rheumatologist. So very happy to have that sorted. Ill let you know what happens next.
Posted 1/30/2013 1:04 PM (GMT 0)
Good to hear that your doctors are investigating your issues.  As a note, my blood work shows fine but am still diagnosed with sacroiliitis.  The rheumatologist can send you for MRI, Xray, etc to see what's really going on (and will also listen to your symptoms which tell them a lot too). 
Posted 1/30/2013 9:15 PM (GMT 0)
Yes im very sceptical about bloods too....thanks for the reply, ill definitely ask bout X-rays etc...your suggestions are so helpful
Posted 1/31/2013 1:26 AM (GMT 0)
Good luck. Keep us posted.
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