Anyone out there with Ankylosing Spondylitis?

Anyone out there with Ankylosing Spondylitis?
4
Ankylosing Spondylitis - 100.0%
0
Presence of the HLA-B27 gene - 0.0%

 
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Pattie517
New Member


Date Joined Apr 2007
Total Posts : 18
   Posted 12/13/2007 10:16 AM (GMT -7)   
I went back to the doctor yesterday and told him about my new complications. Ongoing lower back pain shooting down my right buttocks to my legs, stomach burning and irritation of the eyes. He wants to test my stool for other bacteria which I was diagnosed the 1st time around. He gave me antibiotics before and it helped me a lot, he is afraid that I probably have it again. He then tested me for a genetic HLA-B27 gene for Ankylosing Spondylitis. This is new to me, he says it's most common in men than in women. I told him about feeling morning stiffness and unable to sleep at night from tossing and turning. I almost feel like when you ride a fast rollercoaster and you feel all beat up but this pain is ongoing and tiresome. Stiffness of the back and shoulders. From my research this sounds like inflammation of the spine. Great! this is all I need. I was putting it off going to see the doctor cause the Holidays are here and I didn't really want to hear anymore bad news and now I am depressed, logically. I told my husband but not my family, I feel guilty letting them know what is now happening. They worry so much and besides I don't like that kind of attention, like the pity look on their faces when I tell them my situation.

He wants to see me again in 3 weeks to view my results and hopefully give me the antiobic for the bacteria if any. I took tylenol once for the pain but it didn't do anything. I wander if I should take something stronger, but I forgot to ask him. Would anyone have any suggestions for this? If so Please share!

Feeling tired and frail.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/13/2007 11:06 AM (GMT -7)   
There are many on this board who have AS. I myself and probably many others too have inflammatory arthritis associated with Crohns. I feel like something in me is always aching. So you are definetly not alone. Many of us also have Osteoarthritis also (me too).

I would recommend that you ask for a referral to a Rheumatologist. They will help you the most with your joint pain. And yes you definetly need something stronger than Tylenol. But remember no Advil, Aleve or Aspirin. They are bad for our guts. Good Luck!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


bluemeanies
Veteran Member


Date Joined Jun 2004
Total Posts : 1372
   Posted 12/13/2007 12:17 PM (GMT -7)   
I do not have AS but do have spondyloarthritis. I have ongoing tendinitis in my wrists, hands and feet. It is causing very painful bone spurs and tendin pain. I see a rheumatoologist also. I hope you can get some relief.
 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 12/13/2007 5:26 PM (GMT -7)   
I am HLA-B27 positive and I have AS. Spondyloarthropathy associated with inflammatory bowel disease is one of the spondylitis diseases. My arthritis, entesitis, and sacroiliitis flare independent of my bowel disease activity. I have had many AS flares even despite my gut being in remission. I have had several entesitis flares while on Remicade and then Humira. My rheumy is very concerned because the inflammation is causing some serious damage in my shouders and knees. Since it appears that the anti-TNFs are now offlimits to me, the rheumy is unsure what can be prescribed that won't aggravate my gut. I see the GI next week to try and work this out.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 12/14/2007 1:05 AM (GMT -7)   
My dad and brother both have Ankylosing Spondylitis, but I do not. My brother has been in remission for several years since taking Enbrel once a week at home.
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06. Remission since surgery.
 
Pain-free, med-free, and very thankful to be healthy again :)


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 12/14/2007 7:17 AM (GMT -7)   
I got the CD from my Mom. A few years ago, my Dad was diagnosed with AS, which I then found out can also be inherited. Oh lucky me! I have one sister, but she was adopted, so I hit the biologic jackpot! I have lots of joint issues, but so far my Rhuemy thinks they are just CD related not AS, I can't take any of the arthritis type drugs so I see an accupucturist. It helps, but it isn't a miracle cure.

Get a referral to a Rhuemy, that is your best bet for some relief.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1205
   Posted 12/14/2007 8:45 AM (GMT -7)   
I have AS.
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 12/14/2007 1:04 PM (GMT -7)   
I have AS, inherited from my Dad. I'm HLA-B27 positive as well.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Starting Humira 12/07, currently .7ml (17.5 mgs) injectible Methotrexate weekly, 2 mgs Folic Acid daily


Pattie517
New Member


Date Joined Apr 2007
Total Posts : 18
   Posted 12/14/2007 2:15 PM (GMT -7)   
OMG! Nanners that is exactly how I feel, like something inside is always aching me. I have been feeling a lot like this at times and I thought it was because of lack of sleep or working out. Does your body feel hot like when you have stayed up all night. I don't know how to describe it. Maybe I just feel like that all the time. Today I am feeling so much better, I didn't take anything different other then Nexium and Lialda yesterday. I woke up this morning feeling like a totally different person. I even had dreams last night. I can climb a moment from how good I feel. My mood and all, even though I do still feel a subdue back pain that is always there, but the rest of my body feels good. I am so confused in the way this disease makes you feel. When I 1st got diagnosed and found this site, I felt bad about everyone who has had many operations and thought that since all I had was flaring in the stomach I was in the safe zone. I know there are a lot of complications that may come up, but I didn't realize it would be so soon in my age. I'm 31, but I feel older and come to think about it I have been feeling like this for quite sometime specially in my late 20's, I guess my body was trying to give me hints.

When my test results come back and if I am positive for anything that deals with the bones I will ask him for a referral to a rheumy.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/14/2007 2:23 PM (GMT -7)   
Pattie know you are not alone. You will see alot of posts from folks talking about joint pain. I currently am having some issues with my left knee that I will have arthroscopic surgery on soon, but from all the tests and moving my legs around that they did yesterday I am really hurting today. Funny thing is the Ortho doc said the wear on my knees looks like someone 15-20 years older than I am, and I just turned 50 two months ago. So I have my mothers bones at my age. Aren't we lucky! NOT!

You should still request the referral to the Rheumy. Its not only bones that are messed up with us, but are joints too. I'm telling you seeing a Rheumy has been a godsend to me. Let us know how it goes.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Pattie517
New Member


Date Joined Apr 2007
Total Posts : 18
   Posted 12/14/2007 2:40 PM (GMT -7)   
Manners- I hope everything turns out okay with your knee. I will definetly call my doctor for a referral to the Rheumy, thank you so much for listening and I will definetly keep you posted.

Pattie517
New Member


Date Joined Apr 2007
Total Posts : 18
   Posted 12/14/2007 2:44 PM (GMT -7)   
Zanne- I thought about seeing a chinese doctor for acupunture, how well does that work for you? Taking so many meds worries me, after time don't you become immune to it, that they would wear off.

Pattie517
New Member


Date Joined Apr 2007
Total Posts : 18
   Posted 12/14/2007 2:50 PM (GMT -7)   
Ides- so meaning that you can have an AS flare without constantly going to the bathroom. I figured since I was not going too much my body aches were something else. I told the doctor about feeling better tummy wise except for burning right before going to sleep and waking up and he still thinks that I may have too much bacteria in the stomach. So he send my stool for more tests. i also noticed that my teeth are sensitive when brushing especially my gums, I haven't been to the dentist in 2 years maybe I have to go back for a checkup since I am having some many problems everywhere else.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 12/14/2007 3:04 PM (GMT -7)   
The accupuncture helps. I won't say it is a miracle cure. I didn't go in believing it would help at all, so the fact that I have continued with it for about 9 months says something. My worst months have always been December - March. I started at the end of March 06. So the true test is really coming up now. It can be a bit costly, although my guy just opened a new clinic with significant cost reductions. So my best advice is to find someone reliable and hopefully you can find a little bit of relief.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


immunosci
Regular Member


Date Joined Jun 2006
Total Posts : 326
   Posted 12/15/2007 6:29 AM (GMT -7)   
I'm waiting for my formal diagnosis of ankylosing spondylitis. I've had SI joint pain for almost a year and a half that has been steadily increasing to an almost unbearable level. I did the physical therapy thing. The PT said that my SI joint was "locked". I'm waiting for my rheumtologist referral to come through and get an appointment set up. Also, my mom had AS. Hope you're feeling better soon.

Jen
-Formal diagnosis of Crohn's Disease in ileum in July 2005.
-Experienced what were most likely flares for 12-15 yrs.
-6-MP, protonix, cymbalta, wellbutrin, trazadone, miralax, allegra, celebrex


Opossumgirl
Regular Member


Date Joined Oct 2006
Total Posts : 121
   Posted 12/15/2007 9:39 AM (GMT -7)   

I am HLA-B27 positive, have AS and crohn's-related inflammation all over much of my bod.  I am pretty sensitive to meds, and the best pain control med for me without being totally stoned is Ultram.  When the pain is blinding and I can afford time off from actually having a life, I take hydrocodone. Get a good doc, that is your best hope, as per my personal experience anyway.-Opossumgirl

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