There are quite a few of us who also have AS or some other form of Spondyloarthripathy (SpA). Many will tell you that the joint problems are far worse than the gut. That's the case for me.
To be honest, I couldn't tell you which began first. I complained of stomach pain and joint pain all through my childhood. The beginning of my road to treatment came at age 13, when I was Dx as having tendonitis in all the extensor tendons across the top of both feet. This type of soft tissue inflammation is often the early stages of AS. I suffered with all sorts of tendonitis and bursitis issues through my teens.
My first really bad gut flare occurred when I was 15. I had a significant weight loss, constant diarrhea and lots of gut pain. After a week in the hospital, the Docs were baffled. They thought my pain sounded like classic gall bladder disease, but the tests were normal and I was "too young" for that. I was sent home and Mom was told I ws anorexic. Thank goodness she didnt buy into that! She knew I loved to eat and that theree really was something wrong. We just didn't find the answer.
Suffice it to say that I didn't get a real answer about
anything until I was 37. The gut flares continued with hospitalizations every 2 to 4 years for the severe episodes and I leanred to live with the mild to moderate symptoms.
Back to the joints. At 15, my knee got really bad. I was told that the problem was the result of my hips widening during puberty and that it would resolve with time. At 19, when it swelled up again and I could barely walk, I had exploratory surgery. (This was before MRIs). They found that the synovium (joint lining) was so inflammed that it was being pinched and cut up between the knee cap and thigh bone. Another classic for early AS.
I didn't tolerate NSAIDS well, even though I tried almost every one out there. Often, I felt as if I had to choose between relieving my joint pain or suffering with a bad gut.
At 24, they thought I had a torn rotator cuff. That turned out to be only more inflammation and joint space narrowing. Can anybody say EARLY AS? Apparently the Ortho couldn't.
By the time I was finally Dx with Crohn's, I had learned enough to be certain that my joint problems were likely AS. I got a referral to a Rheumy and he Dx me at the first visit based on my physical exam, decreased ROM and history. The bone scan showing arthritis in my shoulders, hips, knees and ankles, the x-rays showing sclerosis of the facet joints in my lumbar spine and the bone denistometry showing oste
openia clised the Dx a few weeks later.
I've had a lot of pain from my R SI joint over the last 4 years although radiology tests don't show any damage there yet. My Pain Doc has been injecting that joint with steroids and it brings a great deal of relief. I am certain that I wouldn't be able to walk without these injections.
Now, I'm being treated by my Rheumy for the AS with Humira and a low dose of pred. This has done wonders for both my joints and gut. Although I'm not exactly wonderful, I am much better than I had been and I don't have any complaints.
I found some great info and support through the SAA as well as kick as. Here's a link to their site:http://www.spondylitis.org/main.aspx
They also have a great message board. I am "Wormy" on that site.http://bbs.spondylitis.org/cgi-bin/ultimatebb.cgi?ubb=forum;f=1
I'd suggest that you do some reading about
Spondylitis and get a referral to a good Rheumy who can Dx and treat you.
Keah a.k.a. Wormy
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Post Edited (Keah) : 11/11/2007 3:30:00 PM (GMT-7)