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07-04-2015, 02:22 AM   #1
POTTYTIME!
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Spondylitis anyone?

After months of pain in my lower back, my GI had a CT SCAN ordered. After my spine doctor looked I had to have an MRI. Those results came back as degenerated and bulging disk with arthritis in my lower back. Seems like the crohn's disease is eating my body up. I go Wednesday to start a month and a half worth of procedures, "3 times in 2 week intervals" called Medial Branch Block. Going to cauterize the nerves in my spine. Has anyone had this done. If it dont work, does the pain get any better? Right now I feel like my spine is going to break in half. My Nero surgeon told me that it should last 18 months max. Then have to go back again. If it dont work, then they are talking surgery. Im in my mid 30's and not sure about someone cutting on my back, but im not to comfortable about him sticking needles in my spine multiple times either. Any info will help. Thanks.
07-04-2015, 04:13 AM   #2
Axelfl3333
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I have a really good friend who had a burst disc that was causing extreme pain he was on morphine it was so bad.he had the disc removed and is now a golf junkie your situation sounds very similar.good luck all the best
07-04-2015, 11:18 PM   #3
Mr chicken
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Ds has juvenile spondyloarthritis but it hasn't spread to his spine yet as far as we know
Have you seen a rheumotolgist?
They are the ones who treat spondyloarthritis or AS.
http://www.spondylitis.org/about/overview.aspx

Good luck
Fwiw biologics plus Mtx have helped slow things down for Ds
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07-05-2015, 12:16 AM   #4
POTTYTIME!
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No, just a Nero surgeon, that is going to perform the Medial Branch Block. Should the humira injections be helping this? Not letting the crohn's take over my body.
07-05-2015, 12:54 AM   #5
Maya142
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My husband and both daughters have Ankylosing Spondylitis. It's actually more common than most people expect with Crohn's. If it were me, I would see a rheumatologist before doing anything surgical.

It's worth seeing a rheumatologist, just to make sure that your spine doctor is treating you correctly. If it is degeneration and bulging disk, that is osteoarthritis and not really a sign of something inflammatory such as AS, but if it is arthritis caused by Crohn's then you need to see a rheumatologist.

If it is AS or SpA (spondyloarthritis) and inflammatory, Humira should help. Some people need additional meds, such as Sulfasalazine or MTX, with anti-TNFs but those are more often given for joints other than the spine.You may also need a higher dose of Humira (my daughters both needed it weekly).

Lower back pain that improves with movement and gets worse with inactivity (sitting sleeping) is a classic sign of SpA. So is morning stiffness.

Good luck!
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diagnosed with Crohn's Disease at 16
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Mom of S (23)
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07-08-2015, 09:06 PM   #6
Elektrikhd
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I'm wondering if I might have the same. I've been having back pain more often than not over the past few months, especially lower back. It's been kindof non-specific, coincided with a flare, but the flare has mostly cleared up, while the back pain has gotten worse in the past few days, knees bothering me too. Feels like joint pain, worse in the morning, eases up later in the day. Horrible this morning, but I forced myself to take a shower, which helped some, and then I forced myself to go for a short walk, and that helped a little more. My appetite has dropped off as well. Planning to call the doctor tomorrow unless I wake up feeling fine.

Is this sounding like AS to anyone? Pain so bad that you don't want to move plus stiffness, little appetite, some queasiness.
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07-08-2015, 11:10 PM   #7
Maya142
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It does sound like you should see a rheumatologist. Pain that gets better with movement and morning stiffness are classic signs of AS - especially since it is lower back pain.

AS flares don't necessarily coincide with IBD flares, particularly if the spine is involved.

My younger daughter does have nausea and no appetite but in her case those are related to gastroparesis and Crohn's - not sure how it would be related to AS unless you are taking in NSAIDS which can cause all sorts of stomach symptoms!
Good luck!! Hope you can get to a rheumatologist soon.
07-09-2015, 08:29 AM   #8
Elektrikhd
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The queasiness I had could have just been because the pain was so bad. I'm not in as much pain today, but still lacking appetite (although in my case it's a good thing, with all the prednisone weight I've picked up). I've had problems with nausea during migraines, and I think during the worst of my Crohn's flares it has been because of the pain more than anything.

But seeing a rheumatologist does bring up a good point. I had been thinking I would just call my GP, but maybe I should skip that and go straight to a rheumatologist. It doesn't make a difference for my insurance. One less doctor's appointment and one less phone call would be nice (I hate "business" phone calls). Should I skip the GP or should I see him too?
07-09-2015, 08:36 AM   #9
POTTYTIME!
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The GI will recommend you to another doctor. Or y I u can get your own. I have done both myself.
07-09-2015, 09:11 AM   #10
Clash
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Our insurance is set up for no referrals also.

My son has juvenile spondyloarthropathy related to IBD along with CD. We skipped the GP and made an appt with a rheumatologist who was familiar with CD and it's extra intestinal manifestations (EIMs) that deal with joints. I would recommend the same as the difference joint issues that come with CD aren't the same as RA and such.

Since some joint EIMs can result in fusion of the joints it's important to get a proper dx and treatment as treatment can differ from other forms.
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C age 19
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07-09-2015, 12:07 PM   #11
Elektrikhd
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Thanks, this is making me feel like I'm making the right choices on this. Now to see how quickly I can actually get an appointment, given what specialists can be like. :P
07-09-2015, 02:49 PM   #12
Clash
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Generally, rheumatologists have long wait times. When we first started looking the shortest wait time we found was 6 months.

I would ask to be put on the cancellation list when you call to make an appt. They can sometimes get you in quicker. Also, we got a list of the rheumatologists our GI worked with since it was a surer bet they would be familiar with CD EIMs of joint pain.
07-09-2015, 08:33 PM   #13
Elektrikhd
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I went to see the rheumatologist back in the fall because of various joint pains that didn't seem to be going away and I think I had about a month wait. I got lucky, though, and I'm being seen tomorrow (being off from work definitely helps). Probably helps that I've been to the office before, too.

I remember from when I looked before, there weren't many in the area who accepted my insurance. But a next-day appointment is pretty much an all-around winner for me anyway. I was just hoping for something next week.
10-14-2015, 01:13 AM   #14
POTTYTIME!
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Waiting on call from my back doctor to set up a date for disk replacement surgery. Going to replace 2 spinal disk. He dont want to do the fusion because of my age.
10-14-2015, 10:49 PM   #15
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Dear Pottytime! Take note of all the people with experience of AS. I was diagnosed in 1985 following an ulcertaive colitis diagnosis in 1978.

My AS is a bigger problem than my UC. My advice is do not do anything with your spine until you get expert advice on the AS. This is really important. The two diseases go hand-in-glove along with psoriasis on your skin. Lucky me it comes in threes !!
10-14-2015, 11:09 PM   #16
Maya142
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I agree - have you seen a rheumatologist? I would see a rheumatologist to rule out AS before you have any kind of surgery.
10-21-2015, 04:43 PM   #17
POTTYTIME!
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No, haven't seen a rheumatologist. I have had all the shots, didn't work. All the scans show the damage in my joints. I dont know anything about a rheumatologist. What can they do being the damage is done? I dont wont to live on pain killers as I do now.
11-11-2015, 11:46 PM   #18
tots
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Pottytime!

Having a neuro surgeon do you back is the best. My son was in an accident and my husband
worked for a spine company. We were told the easiest procedures for them are the spine. Where as the hardest thing for an ortho dr is the spine. Makes that a no brainer!


Good luck.

Feel better soon,

Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
11-11-2015, 11:54 PM   #19
POTTYTIME!
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Went to pre-op today. 6 more days. Im so ready. I have turned into a couch weight since the diskagram. Very painful procedure.

Forgot to add, im ready to get off these pain meds. I take 80 to 100 mg of codeine a day depending on the pain. Thats enough to put down a few people and I go through the motion of the day with 90% of the pain to boot.
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