Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newbie with AS and Crohn's

Hi
Just joined KickAS, and was wondering how many others out there also have crohn's and how you cope with it?

I am 38 and have AS since I was 11yrs old and crohns for even longer ( was originaly thought to have coeliacs (spelling?) untill I was 10).

I currently take mobic (meloxicam) and pariat on a dailyy basis. My docor has been playing with my drugs for tha last 6 months to find something better than the mobic but the best pain wise - arcoxia - just turned my stomack to liquid constantly for a month untill i took my slef off.

Any way - enough of that - Im fairly level at the moment but am getting a lot of problems with my neck, and knowing this my GP is likely to want to try something else again - any suggestions (bearing in mind the Crohn's) would be greatfully recieved.

Cheers
GreenBoy

Hi Greenboy

I too have Crohns and AS and couple of other things incase I get bored, I see by the meds your on that your probably in the UK somewhere, as the other guys tend to have meds with whacky names, so how you feeling? I let you in to a secret you feel a lot better coming here there quite a few of us here with the old IBD and AS and this is the most friendlest place on the net you'll find.

My drugs combo is 3g Sulphasalazine, 1g naproxen, 90mg DHC continuse(dihyrocodine)2x day, Dothipin at night and solpadol for break through pain.........When I do get the awlful neck pain and its accompanied with a neuragic type head ache I take Tramadol, it does absolutly nothing for my AS pain but for nerve type pain it does the trick.

Sooooooooo Welcome to the gang, please to see you and if I can help at all with the AS and especially the Crohns give me a shout. Luckly my Crohns seem to have literally went to sleep unfortunatly it woke the AS up on the way out. Certainly not a nice combo if they're both on the go.

Laura

Hello! *waves* I'm new too, also have Crohn's and either AS or enteropathic spondylitis. I'm almost 24 and had Crohn's from age 8, very severely for 7 years, after that it seemed to switch to the arthritis, like Laura! The Crohn's is now pretty mild thankfully, just hope it stays that way! Where are you from? If in Britain hope you're enjoying the heat wave!!

Best wishes,

Clare

Hi
Thanks for the welcome - was a bit worried about coming here, as i have generally tried NOT to associate with other AS sufferers - goes back to childhood when the last thing you want to do is be a round other 'crips' (sorry I know its rude but being rude was my defense mechanism when in pain). Seems very friendly in here, and has a nice air of anonymity - something AS support groups don't.

I hasten to add that I am not against them - i was, before i grew up. Still a bit shy of them though

Got quite a few questions to ask re therapies and treatments but i will try to post them in the appropriate places.

Thank you also for he tip on breakthrough pain - when my neck flares (as at moment) i get severe pain in by teeth and left eye. I take Co-Proxamol for ad hoc pain relief, but they are taking it off the market next year, and that worries me!

Again - THANK YOU for making me feel welcome and not quite so alone.
GreenBoy

PS - watch out i have an extremely dodgy sense of humor (and not every one gets it!! )

Clare - loving the heat wave!

Hope you don't mind me saying this - but very surprised at the number of posts by women - i always thought that AS was more prone in men - am i wrong on this?

keep well!

GreenBoy

Hi Green Boy,

At first seeing your name I was very excited... mistook it for Green Bay (where I am moving in a few weeks).

Welcome to Kickas, this is a special place, hopefully you can take from it as much as I have. Great people here... sense of humor is welcomed, just remember to treat everyone else as you would like to be treated and should be fine.

Much to learn here from the collective group... not too much as a group that goes unanswered.

Take care,

Tim

We just like to talk about it more

yak yak yak yak yak........ yak yak yak yak yak yak...

I suspect there are thousands of undiagnosed women gimping around the world thinking they have chronic fatigue, fibro, irritable bowel syndrome, sciatica,osteo, sjoegen's syndrome, ANYTHING but AS. Because the out of date textbooks and physicians are perpetrating the myth that you can't/don't have AS until your spine is totally fused.

It's the equivalent of saying your house was not on fire until there's nothing left but the smoldering ashes. Fusing is the last stage of the disease process, and women seem to tend to fuse later.

Welcome, GB

There are a number of KickASers, like you and me, with both. If you get to the point of considering anti-TNF therapy bear in mind that some help for both whereas others are for AS.

Best regards,

jcwinnie

Hey Greenboy and welcome to this site. I am female and hail from Canada. Like Wind Rider said, I limped around for a good 6 or 7 years with what I thought was sciatic pain, started using a cane when it was bad and in 2000 had my first CT scan which came back as "mild arthropathy of the L5-SI facet joints bilaterally". Guess the word "bilaterally" could have been a clue, but I was OK with limping about since I knew I had arthritis and managed it with Advil.

It got so bad in the next 2 years I woke up nightly, couldn't breathe, felt like knives between each rib down both sides and blamed my mattress. Changed mattresses 5 times in 7 years-go figure. Joined a gym in 2002 and after 6 months of shear work-out agony and massive drugs the night-time nightmare bagan to ease up. Didn't suspect AS until I got Iritis in 2003, and after 4 episodes in the next year, the ophthalmologist sugg. I see a rheumy. She told me right away she thought I had AS and I was positively diagnosed in April of this year. So that has been my journey.

My rheumy told me that this disease is underdiagnosed in women. Even the diagnoses proposed on my CT Scan and MRI's would not confirm it. The CT Scan was suggestive of a disease affecting women who've bourne twins and triplets-I've never had a baby! Most likely an assumption based on my gender. The rheumy put it down to radiologist/technician inexperience. It has been slow progressing in me, with no fusing (whew) but it sure is painful.

So here I am now, enjoying the company of these fine folk , getting encouraged, educated and inspired.

Hi there and welcome to KA!

Isn't it awful when the drug that helps most with pain kills your stomach. I had the same experience with Vioxx, which is also made by the same company as Arcoxia. Do you find the Mobic helps? It's what I went on after the Vioxx and did absolutely nothing for me.

I see you're a Quantity Surveyor. Never expected to see anyone with that specialty. But then, you're from England, so I shouldn't be surprised. It's only in North America that Quantity Surveying is an oddity. I work for a Quantity Surveying firm in Toronto, by the way.

Hugs,