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02-13-2016, 02:17 AM   #1
JaimeM
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Sacroliitis relief

So I'm not sure if anyone else has issues with their si joints (your way lower back where your pelvis meets your Sacrum) I know it's a common crohns thing but, mine has been terrible since having my son. When laying down they grind and pop(a really deep painful pop) I use heat but just wondering if anyone has found any tricks for relief
02-13-2016, 11:13 AM   #2
Lisa
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I had an awful flare years ago now, was so bad it literally took me a half hour to get up from the lying down position....and that was on pain killers!!!

What seemed to help for me was trying to keep moving, even now if I sit on the floor for more than 5 minutes I walk like a hunched over old lady for a few minutes when I first get up. It stinks!!!

Other than that, I'd like to hear from others too as I don't have any good ideas...and hope I don't get as bad a flare up of it as I did the first time!!!!!
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
02-13-2016, 11:42 AM   #3
Clash
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Have you been to a rheumatologist? There are joint EIMs that run concurrently or independently of CD. There are a number of members on here that are dxed with SpA(spondyloarthropathy , AS (Anklyosing Spondylitis), JSpA(juvenile spondyloarthropathy) related to IBD. Because the result of these can be joint fusion it's important to be under the care of a rheumatologist. Biologics are the goto med but vary by the individual which works best. Remicade didn't do well for my son's JSpA but humira seems to be working together. Since it can cause loss in range of motion and even require hip replacement surgery we have followups that coincide with GI appts.

I'm going to tag Maya142 as she has daughters and hubby with AS, one who also has CD.

Of course there are other forms of joint pain that run concurrently with CD that usually subside with getting the CD under control.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
02-13-2016, 11:48 AM   #4
JaimeM
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I did see a rheumatologist for awhile before I had my son. But. I went off those meds during pregnancy (I can't even remember what it was) but when I went off regicide most of my joint pain went away. It's just been the si joint pain that I've struggled with and its just been really bad the last few weeks as I'm dealing with this flare/perforation stuff.
02-13-2016, 12:09 PM   #5
Maya142
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My husband and kids all have AS. AS is like Crohn's - it needs to be treated to prevent progression and damage. Over time, your SI joints and spine can fuse without treatment. Most rheumatologists use anti-TNFs and the newest research is showing that it prevents progression.

My husband's SI joints are completely fused. His spine is partially fused. He has had many hip replacements because of his AS. My girls both have SI joint damage and both have partially fused SI joints. They also have hip damage and will probably need replacements at some point. This is despite aggressive treatment. AS is not fun!

There are various kinds of arthritis that are associated with Crohn's. The kind that affects the SI joints - axial spondyloarthritis or Ankylosing Spondylitis, flares independently of the IBD. It may or may not respond to the medications used for Crohn's.

CCFA has a good handout that explains the various types of arthritis: http://www.ccfa.org/assets/pdfs/arth...plications.pdf

I would try to see a rheumatologist as soon as possible.

In the mean time, heat (a heating pad) and ice can help. A TENS unit can also help. Some GI's are ok with patients using Voltaren gel (Voltaren is an NSAID but less is absorbed systemically with the gel) but you do need a prescription for that.

Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-13-2016, 12:17 PM   #6
Clash
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With SpA, JSpA and AS it is the SI joints that are most affected.

For my son, the increase of his mtx along with humira took most of his SI joint pain away. Though methotrexate isn't supposed to be especially helpful with SpA it has been for my son as well as a few others.

If you do a search on any of these conditions you can see if your symptoms match up. It's true that the EIMs of CD include joint manifesting but it's important to make sure the EIM isn't one that requires it's own treatment to ensure damage doesn't occur.

My son has JSpA and it can run independent of active flares but he also has joint pain in other joints that run concurrently with active flares those are treated by getting his CD under control while the JSpA involves regular xrays, MRIs, physicals and treatment checkups.
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