How many with ankylosing spondilitis (misspelled) AND Crohns?

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Regular Member

Date Joined Jun 2006
Total Posts : 229
   Posted 8/27/2010 9:17 AM (GMT -7)   
I have an appointment with my pcp on Monday, because my low back pain is getting worse and making me REALLY grouchy.  My legs hurt the most, particularly my left leg, left hip, and left knee.  I've got some tingling in my lower left ankle and sometimes into my toes.  UGH!  It's like a severe dull ache--does that make sense?  Anyway, just wondering who here suffers and how you got your diagnosis.  Also, what helps to relieve the pain.

Veteran Member

Date Joined May 2010
Total Posts : 8384
   Posted 8/27/2010 10:42 AM (GMT -7)   
Well....I have arthritis in my SI joint, pain in my knees and hands and wrist, but my rheumy says no ankylosing.

My GI put me on sulfasalazine last fall to help alleviate my joint pain, and it did get rid of the hand and wrist discomfort. But my SI joint continues to ache and my knees act up sometimes.

I do nothing for the pain since ibuprofen hurts my belly. I've reduced my activities to keep my SI from hurting so much, and I was wearing hand braces when they hurt badly.

I do gentle yoga once a week to keep flexible.
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (6g/day), Sulfazine (1.5 g/day), Prevacid, vit. D (20K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 8/27/2010 12:57 PM (GMT -7)   
Mine has just been called "Crohn's related arthritis" for years, as I think that is an easy name for them to choose.  We've gone through every possible option except one and the only thing that has worked so far is methotrexate injections, which I had to stop due to elevated liver enzymes.  And, prednisone helps enough that I've been stuck on it for 20 months, but it doesn't eliminate the problems at the dose I'm on.  Everything we've tried for the arthritis either hurts my stomach or elevates my liver enzymes.  I take Ultracet for pain, but it isn't helping much right now...just taking the edge off in this flare.  I would recommend seeing a rheumatologist...hopefully your pcp will refer you. 

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 8/27/2010 1:05 PM (GMT -7)   
I have a lot of joint issues, my rhuemy would like my GI to put me on a biologic, but my CD is not bad enough. I don't have AS as of now. But I have a strong family history on my mothers side for the CD, multiple family members, including my mom. My dad was diagnosed with AS about 5 years ago, so with all my joint issues I am thinking it is just a few years away. I seem to have gotten the short end of the stick in the biology game. I am a biological only child (I have an adopted sister) so I can't say if the gene pool would have gone to anyone else, but....

tropic girl
New Member

Date Joined Apr 2010
Total Posts : 4
   Posted 8/31/2010 11:09 AM (GMT -7)   
I have AS and crohns. Interestingly enough the AS showed up at age 25 after a fall but it took 14 years to diagnose and that was only when I started to experience crohns symptons. I am now 57 years old. I have been through the whole drug protocol, Pred, Entocort,Imuran Asacol.

I started remicade last year and it worked for 6 months. It relieved my AS pain almost immediately and crohns afew days later. It was beautiful while it lasted. I am now scheduled to take Humira. The nurse actually came today to help me withe needles but my BP and heart rate was too high.

I am glad you are getting help early for both conditions because of the delay in diagnosis my spondylitis is far advanced and I am actually hunched over. Only surgery can help and that I would have to think about because of osteoporosis.

It is very challenging to have both conditions. I held on to my job as long as i could now I can no longer work due to a fused spine and neck. My advice is to keep moving and tai chi helps a lot. Take care
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