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crohn's related back pain??

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Posted 9/9/2014 8:21 PM (GMT 0)
I've had back pain with CD before but this time it feels a little higher up to mid back area, tender right around the mid spinal column.  I still have the never ending acidic diarrhea, but don't seem to be having abdominal pain other than feeling occassional burning in the rib cage area and the Reflux symptoms that have been very active lately.  I tested positive for anklosing spondylitis (spelling) before, but now I am quite a bit older, don't know if that still can reactivate,  I was also diagnosed with scoliosis a few years ago.

Don't know if I should tell my General Doctor to check my back before I call up my GI as this may not be related?  

 

Posted 9/9/2014 8:38 PM (GMT 0)
If you have ankylosing spondylitis you should be seeing a rheumatologist. That's who I would call about your back pain.
Posted 9/9/2014 8:42 PM (GMT 0)
As my user tag indicates, I suffer from AS with the CD.  If you don't have one yet, I would suggest seeing a rheumatologist for the AS.  My GP is clueless about both the Crohn's and AS.  My AS can flare up really bad, even when my CD doesn't seem to be in flare...or vice versa...but it's life altering when both are revolting against me at the same time.  It's not good, and it's very damaging, as I already have degeneration of my mid-thoracic...and the location you describe for your pain is in that vicinity.  Get with a rheumatologist before you have damage start...
Posted 9/9/2014 9:30 PM (GMT 0)
I was only told that I had a positive AS test once during a flare I was going through. Don't know if they said that in error or what? The GI's office never mentioned it again, nor have I had much back trouble outside of a few times when I was flaring, one of those times I got an x-ray for my back pain that showed the scoliosis and nothing else.

However I did visit a rheumatologist, a few years back. He put me back on prednisone for all the joint pain I was experiencing at the time. The other doctor's wanted me off it since I had been on pred for many years for the CD, and my GI told me he wouldn't treat me with prednisone anymore, but before that, when he did treat me with prednisone for my flares, the back pain would also resolve. I've been off prednisone for almost 4 years.
Posted 9/9/2014 9:52 PM (GMT 0)
You don't need pred necessarily. A rheumatologist has the same drugs toolbox as your GI, but your GI knows nothing about your joints.

When you say you tested positive for AS, I think you mean that you tested positive for the HLA-B27 gene, which is not the same as saying you have AS. A rheumatologist will look at many factors to determine whether you have AS.

Please go back to see your rheumy.
Posted 9/9/2014 10:03 PM (GMT 0)
Yes, when I think back, think that is what it was, the AS gene. So what does it mean if I carry the gene, if anything at all? While I have had some problem, I never had any severe problems with my back?

Thanks for all your replies
Posted 9/9/2014 10:09 PM (GMT 0)
You can have AS with or without the gene. Having the gene just makes it more likely that you can develop AS.

My rheumy spent two years trying to figure out if I have AS. I do not have the gene. He finally decided I did not have AS when he did not see evidence of structural changes to my SI joint, where I have had chronic pain for years.
Posted 9/10/2014 1:22 AM (GMT 0)
Thank you for explaining. I appreciate that.
Posted 9/10/2014 7:09 PM (GMT 0)
Try to find a rheumatologist that's well-versed in enteropathic arthritis if you can. The one rheumatologist I saw knew zip about the arthritis that goes with Crohn's disease. She did diagnose me with scoliosis of the lumbar region though (like I needed something else).

Have you had any epidural/spinal shots in that area? The only two epidurals I've had in my life both caused permanent problems, the last one much more serious. I haven't been dx'd with AS, but have arthritis in several areas of my spine including the neck area, lower back, and the area of these epidurals. I know it's related to the Crohn's because my colon surgery gave me a 1.5 yr. remission in which my arthritis became quiescent. It's been active for over 11 yr. now. It is my no. 1 complaint as the pain just never shuts up. I've recently started sulfasalazine, hoping it will make a difference.
Posted 9/10/2014 7:48 PM (GMT 0)
Thanks, and sorry to hear of your spinal problems I've had a few epiderals. The last one was for pain control after a bowel resection. After they removed the needle, my backside would wet the hospital bed, so they checked and found that I had a spinal fluid leak to the outside.. They told me that it was very rare and sent in a specialist who told me that I was in danger of developing spinal meningitis. He said that often it may leak to the inside and the body absorbs it, but almost never to the outside. I had to stay in the hospital longer and on my insistence, was released, so they sent me home with a VON coming daily to check the drainage and change the dressing. With proper care and some prayers, it did stop. I never connected the tender spots on my spine as being related to epiderals but it is possible I guess, they are in about the right spots.. Hopefully they will find some safe medicine to treat yours and others who are dealing with CD or immune related arthritis.

I notice that you have had CD for over 43 years. I've had mine for over 35. It's about time some one found something for us, like how long can we suffer?
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