For those of you with a DX of Anky spond

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songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 10/20/2008 8:24 PM (GMT -7)   
So Ive had MRIS, XRAYS, and seen a crappy orthopedic....to no avail.  I have bad pain in my right knee and pain in both hips with constant popping in both hip joints, low back pain, and popping in shoulder blades.
 
I have urinary and woman problems...and started researching.....do you think I may need a Rheumy....could I have AS? I constantly have back pain and with the hips just starting to give me issues within the last 90 days...Im startingtothink we are on the wrong road....

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Past meds: Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Pred, Asacol, Prevacid, and the list goes on. Currently on Humira every 2wks,  Pentasa, Tapering Prednisone now.


Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 10/20/2008 8:43 PM (GMT -7)   
Probably best to check with a rheumatologist. Get tested for the HLA-B27 gene, too. Read all the stuff from Alan Ebringer on the London AS diet, and cut out all starch. He would also recommend blood tests for antigens to Klebsiella pneumoniae.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 10/20/2008 8:49 PM (GMT -7)   
If you are having joint problems you need a proper evaluation by a rheumatologist. Some of the problems caused by Spondyloarthropathy [SpA] and Anykylosing Spondylitis [AS] are subtle changes that might not be evident to an ortho. SpA occurs in about 30% of people with Crohn's. It is also called the arthritis associated with CD. I had severe hip pain that an ortho considered to be from avascular necrosis and he scheduled me for hip replacement surgery. My GI and rheumy thought it more likely pain from SpA and put me on Remicade. After the 3rd infusion, my hip pain disappeared and I cancelled the surgery. That was three and a half years ago. Make an appt with a rheumy. Hope you can find the cause of your discomfort.
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.
 


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 10/22/2008 8:47 AM (GMT -7)   
I already had an ortho say I have avascular necrosis in right hip and right knee...thats crazy!! My primary care thought I was crazy yesterday though and wouldnt refer me to a rheumy! I really think I should switch docs because I believe in my heart I need a rheumy to dx me.

thanks ides
!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Past meds: Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Pred, Asacol, Prevacid, and the list goes on. Currently on Humira every 2wks,  Pentasa, Tapering Prednisone now.


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 10/22/2008 8:47 AM (GMT -7)   
I already had an ortho say I have avascular necrosis in right hip and right knee...thats crazy!! My primary care thought I was crazy yesterday though and wouldnt refer me to a rheumy! I really think I should switch docs because I believe in my heart I need a rheumy to dx me.

thanks ides
!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Past meds: Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Pred, Asacol, Prevacid, and the list goes on. Currently on Humira every 2wks,  Pentasa, Tapering Prednisone now.


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 10/22/2008 9:38 AM (GMT -7)   
If your pc won't give you a referral you should either ask him/her to do the bloodwork that will show AS if it exists; or, better yet, get a new pc!
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 10/22/2008 11:23 AM (GMT -7)   
OH MAN...I can't believe it. At least four folks who get the hip and knee pain. Mine started in my hips, the pain mingles with the constant backache and only recently, the left knee's actually been swollen. I figured it was corresponding to a form of arthritis that derives from Crohns. I haven't fallen or anything so its just a constant throbbing fire in my hip joints. They've been popping like crazy too. I know I'm not helping but as soon as I'm sure of some insurance coverage I was planning on seeing a doc, finding a new GI, and finding a Rheumy. I'm only 27 and there hasn't been any relatives to get any kind of RA before 40. It feels like I spend most days trying to find the will and energy to overcome to pretty constant pain from the joints and mild back spasms (also constant). I know it sounds crazy but no one has mentioned the hip thing much. That's pretty much where the agony started and radiates from.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 10/22/2008 12:12 PM (GMT -7)   
I believe that the hips can cause the knees to act up and it causes alot of the lower back pain we feel.....( read on internet--after much research)

I am also your age, 28, and hate the constant popping and pain. I do yoga and lowimpact exercise and get so tired of being restricted from doing certain exercises due to the pain. WE ARE definitely too young for this !!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Currently on Humira every 2wks, Pentasa, Entocort, Phenergan, Lomotil, Celexa, Lortab, Ambien, and new this week Zoloft.


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 10/23/2008 7:06 PM (GMT -7)   
I have this coworker, she's about 45 or older. She's got it in her knees. She was starting to bend down and you could see it hurting her. I tried to do it for her...and I realized I was moving the same way. Like that movement could hurt. She said that someone my age shouldn't be moving like an old person.

I'm big on low impact exercise. I can't do it when I hurt so bad. Not won't...but can't. It feels like I could physically start puking from the pain or start screaming and never stop. I figured that the pain began in the hips and was spreading or causing the other problems. Except that the backache actually kinda comes with the Crohns (its not that kind of backache ya know...it's the other one). I loved doing Deep Dancers Stretching. OH man, it would make you feel all your muscles but it also made me feel so amazing in other ways. The sad bit of it all is that when I try to do it...well, I'm afraid to nowadays. Basically, I'm just waiting. It kinda sucks to feel so old eh? :-P
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)

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