07-19-2015, 02:42 AM   #1
Join Date: Jul 2015
Location: Sydney, New South Wales, Australia
Hello :)


This is my first post.

I've recently been diagnosed with Grade 2 Ankylosing Spondylitis. Originally I had lower back pain some ten years ago, had an x-ray, and GP told me I had a bulging disc. Thereafter, all the shooting pains in my bum etc I always told myself "sciatica from a bulging disc"...

Whenever my back hurt, I'd say "K, your not exercising, so the muscles weaken and it hurts"...so I'd go exercise.

Sometime in december 2014 the muscles around my right ribcage and lower back would suddenly just seize up. I couldn't remember doing any damage. I just popped some Ibuprofen.

Sometime in January 2015 I had what I thought was a bug. It was just three hours of running to the loo, and then fine, but I'd had these sudden sharp crampings in my bowel. They subsided over a few weeks, but ocassionally I'd just have urgency issues. Most of the time I went once, and I called that the daily bowel motion.

My back would get better for a few days/a week...and then bam. I then experienced bloating, abdominal pain. Screw this, I thought, so off to the GP I went.

She prescribed Flagyl for suspected C difficile, it helped, but the samples came back neg for C Difficile. The bloating went etc, but I just felt a tender gut. She referred me to a GI guy...I still didn't think that back had anything to do with it.

I rang the GI...6 week wait. Oh crap.

Luckily I work in medical science, so a doctor friend referred me for a CT scan. That showed mild inflammation of the terminal ileum. Suggestive of crohns.

But it showed bilateral sacroilitis, also, suggestive of Ankylosing Spondylitis.

(Actually, funny story, I was flirting with the cute radiographer before I went in for the CT scan. She had a blank serious face when I came out - scared the crap out of me!). I remember looking at her looking at the computer screen and said, unaware it was at the top of my voice

"I'm dying aren't I? Tell me, I'm a cancer researcher dammit; I'm supposed to get cancer, as in get it, kick it in the ass! Not get it!"

She said no, but did say I wouldn't have to wait 2 hours for the report, but 15 minutes.

Anyhoo, based on that I got a quicker meeting with the GI. I'm scheduled for cameras at both ends in 2 weeks. He thinks it's strange I havent had pains, but rather, just an uncomfortable feeling in my guts. I told him about my back, and referred me to a rheumatologist.

She listened, looked at the CT scan, referred me for x-rays of the entire spine. No fusion fortunately.When I came back, she asked me if I rode a motorbike or did sport.

I'm a geek, I said. What is this , moto, bike? Sport? Isn't that the Inuit name for sneezing during lovemaking?

Well, she said, your L1 verterbra is missing the top bit.

Check under the couch.


Nothing, please continue. (my knee-jerk reaction to cold fish people is to be extra perky...comes from dealing with MDs in my line of work).

She did prescibe Mobic (meloxicam)..and that had pounced the back pain. In Aus (where I am) we have to go through a process before qualifying for state paid DMARDs (for AS at least)..she's waiting for that and for my GI to figure out what's happening with the gut before the TNF blockers, my last blood test showed CRP of 55.

We still don't know if I have Crohn's, with AS secondary, or AS with subclinical gut inflammation. I know it's not parasites/worms. I checked. The girls in the lab still think it's weird I find it interesting to look at scotch tape under the lab microscope (I gave myself the scotch tape test - google it).

This is also the worst thing about being a medical scientist. I'm used to trawling through the complex signalling and biochemistry in an abstract manner. Not when it's me. Still, it's easier to trawl through internet BS (and boy, I've seen some doozies!)

I started exercising. I figured if the AS becomes bad, and I need a cane, at the very least I'm going to have a well toned bottom.
07-19-2015, 08:47 AM   #2
Mr chicken
Senior Member
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Paging Maya her kiddo has both JAS and crohns

Ds has crohns with secondary JSpA. Mostly in his ankles ,knees,hands ,wrists and neck
SI joint just started to join the party the last few months on the left side

He didn't tolerate mobic well - caused a lot abdominal pain.
He was on humira at the time of dx of his JSpA .
The Rheumo added Mtx which has helped a lot
He also uses voltaren gel on specific joints since the NSAID gel doesn't affect the gut as much
Heat , ice, swimming , and JSpA specific joints exercises are key to keeping muscles strong to help painful joints.
DS dx at age 7 Crohns
Humira 40 mg every 10 days
Mtx 12.5 mg -due to juvenile spondyloarthritis associated inflammatory bowel disease

Vsl#3ds iron Zantac folic acid

Aka MLP....
07-19-2015, 08:48 AM   #3
Mr chicken
Senior Member
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Link to AS
07-19-2015, 01:01 PM   #4
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Both my daughters have AS and so does my husband. My younger daughter also has IBD. In the US, if you have spinal involvement, generally a rheumatologist would try several NSAIDs and if those fail, then go straight to Anti-TNFs like Humira or Remicade. I know the process is different in other countries though.

In terms of NSAIDs, both my girls have been on Mobic and tolerated it very well. My younger daughter is allowed to be on NSAIDS even though they are generally not recommended for Crohn's patients, since her AS is so much worse than her IBD. NSAIDs do definitely help them, but they both have needed more medications (my husband, on the other hand, has been on only an NSAID for 30 years).

My younger daughter is now on Simponi and Arava and the older one is on Humira and Methotrexate. They are both also on NSAIDs, Mobic and Celebrex. We also use Voltaren gel and Lidoderm patches for pain and LOTS of ice and heat. Tramadol for pain.

My older daughter and husband are currently doing very well, the younger one is more of a work in progress but we'll get there. Both my girls have many joints involved but their SI Joints, lumbar spines and hips are the worst.

Exercise is the absolute best thing you can do for yourself - you might want to try low-impact exercises, like swimming.

Good luck!
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

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