sacroiliitis - does it spread elsewhere?

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uklass
Regular Member


Date Joined May 2009
Total Posts : 65
   Posted 9/4/2009 9:27 AM (GMT -7)   
I've had lower back pain and stiffness for years as well as aching elbows, sometimes so painful I cry with it, but have always put it down to having played lots of sport, riding motorbikes, heavy lifting etc and so self-inflicted. It isn't all the time either so I've ususally put it down to overactivity or stress. I didn't know that this could be connected to Crohns (I don't quite understand how it does link). 
 
A recent CT scan report says "bilateral sacroiliitis" and I will be getting an ultrasound scan done in the next few months. Is this only the start i.e. does it lead to RA or osteoarthritis etc or is it pretty much limited to this area/symptoms? It's hurting like hell at the moment - normally in the past I would have taken a few Ibuprofen tabs and it would have cleared or become manageable but non-NSAIDs are not helping it just dampening the pain a little. I'm struggling to sit through meetings at work or drive the hours commute I've got. I'm going swimming 2x per week and seeing a chiropractor soon but any other suggestions welcome.
 
Penny x
Diagnosed aged 31 in 1996 - emergency surgery (right hemicolectomy). Thought I'd only get 'it' once and have lived in relatively blissful ignorance, apart from a couple of hospital stays for obstructions (scar tissue), until March 09....major surgery, 2 resections, fistula and now only 195cm small bowel left. Not on any meds at present except B12 injections but know there will be some. Just getting used to my 'new' body and it's limitations........ July 09 hospital stay for obstruction & tests show disease back: now on Asacol and waiting to see which treatment I'm put on
 
Penny x


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 9/4/2009 11:29 AM (GMT -7)   
I had sacroiliitis very badly a few years back, bilaterally like you (both sides but one a lot worse than the other - so much so i didn't even realise I had it in the other side!) it did spread to the tendons in my legs and back. I suffered for a good few months until eventually it eased off, swimming really is the best thing, I'd actually suggest you do a little everyday, even just 10 minutes to disperse fluid etc. I was also given a steroid injection directly into the joints. It did eventually go away which was a relief as they wanted me to start using walkig aids and possibly a chair. I had an MRI scan done and it was after that they gave me the steroid (I can't usually tolerate steroids but with the one off injections they assured me effects would be minimal and I was just desperate for something to be done!) to this day I still swim regularly to try and keep those joints healthy. There are things that can be done and I completely sympathise with your pain it is excruciating! I don't think it does lead on to anything else, it didn't in my case anyway but have they checked that its not ankylosing spondylitis or that you have rheumatoid arthritis?
 
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/5/2009 7:45 AM (GMT -7)   
I think you should get with a Rheumy and get yourself tested for Ankylosing Spondylitis or RA? It could also be some bad osteo too, but many on this forum have AS associated with their Crohns. I have been diagnosed with Spondylarothopy (sp?) but need to follow up more with what kind, but this Rheumy always wants to put me on really strong meds and I don't want to do that yet. Good luck
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

uklass
Regular Member


Date Joined May 2009
Total Posts : 65
   Posted 9/5/2009 10:09 AM (GMT -7)   
How do they test for RA or AS etc? I don't know how it works in the UK for getting referred to see a specialist or at what stage they think it important. I've had these pains on and off for years but I'm wondering if it just feels worse now because I can't take the usual drugs to get on top of it or I'm being more sensitive because of what I've been through this year - I've tended to ignore things or just get on with it in the past. Is there a correlation between joint pain and crohn's activity?
 
as ever thanks for reading and your replies
 
 
Diagnosed aged 31 in 1996 - emergency surgery (right hemicolectomy). Thought I'd only get 'it' once and have lived in relatively blissful ignorance, apart from a couple of hospital stays for obstructions (scar tissue), until March 09....major surgery, 2 resections, fistula and now only 195cm small bowel left. Not on any meds at present except B12 injections but know there will be some. Just getting used to my 'new' body and it's limitations........ July 09 hospital stay for obstruction & tests show disease back: now on Asacol and waiting to see which treatment I'm put on
 
Penny x


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/5/2009 11:04 AM (GMT -7)   
Yes my joint pain will get really bad when flaring. But I also have been diagnosed with Osteo and Fibro. I was diagnosed by my Rheumy. I believe each of us Crohnnies should have a rheumy on board. This disease tears up our joints too. I have wear in my knees that is like someone who is 15 years older than me, because of the damage that has been done. And even my teeth have been affected. I think part of the damage comes from the meds we take i.e. steroids. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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