Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group IS THIS STRANGE?

Does your rheumy know about these flare-ups? If so, and she/he isn't doing anything about it, I recommend a second opinion.

Hi Tarnip,
Be sure to tell your doctor about these flareups. You sound like you might have an Inflammatory Bowel Disease (IBD). After all, you are a likely candidate for AS and any IBD since you have the HLA-B27 gene, and it isn't considered rare to have both types of conditions, and either one can be a complication of the other. They are both related by the way, both spondys and both are frequently associated with HLA-B27. I have both AS and Ulcerative Colitis (an IBD) and they often react at the same time.

On the other hand, on rare occasions, severe pain can do any number of things, including stomach upset, diarrhea, referred pains, and so on. High inflammation levels can do just about anything too (so to speak).

Take care,
James

There is an arthritis that is connected with IBD. When the IBD is under control, the arthritis goes away. If I were you, I would ask for a referral to a GI. Sometimes the IBD is treated with the same meds as AS.

I'm sorry you are dealing with this Tarnip!

As for your husband, we know a guy named Bruno..............

please try not to worry quite yet. i certainly have terrible gastritis symptoms and sometimes terrible constipation, other times terrible diarrhea where i don't even digest my food, and yet, through a colonoscopy, only a bit of inflammation in the intestine, with a few very small superficial ulcers in the illeum. and IBD ruled out by a CT enterography as that and the camera pill are the only two ways to really see the small intestine and insurance wouldn't cover the camera pill, so we went with the CT enterography.

and just inflammation but no ulcers in the stomach when scoped in 1993 and again in 2006. sometimes pain and symptoms just don't correlate with severity of physical "damage".

on the other hand, if it is IBD vs IBS, then it is important to get that treated. and that dx could help with the arthritis dx if that is really what is going on.

even my IBS, especially the inflammation and "crohn's like ulcers" in my illeum had me almost dx'ed by the gastroenterologist before being dx'ed by a rheumy in town. then i went down to philadelphia and saw a really good rheumy so the gastroenterologists' and rheumatologists' findings and conclusions ended up complementing one another.

so yes, if your stomach is bothering you, you should have an upper endoscopy. and if your intestines are bothering you, you should have a colonoscopy where they go all the way to the illeum and take a look there as often for those with the spondyloarthropathies, that's the part of the intestine that is most often inflamed, even when people don't have symptoms, like dow reports. but i've been reading more and more how some inflammation and / or crohn's like ulcers there are pretty common for the spondyloarthropathies and that data can be used in helping to dx the spondys. i can dig up those papers this week if you want.

finding yourself a good gastroenterologist could be very useful. it has been for me. even though i don't have IBD, "just" IBS and gastritis, he has always taken my symptoms and pain seriously, never brushed me off, and has helped me in so many ways.

give yourself a new year's present and set up an upper endoscopy and colonoscopy! that's my advice!

Hi Tarnip;
I'm fairly sure I don't have any Official Gastro Issues like gastritis or IBS or anything, but I can definitely vouch for the nausea and not eating thing. Whenever i'm hurting badly, especially the arthritis pain (as opposed to bladder pain or headaches or other causes of pain) I can't eat more than a couple of bites per day. I don't usually have nausea to the point of puking, but a really low-grade nausea that just prevents me from eating. Not unlike my "good days" while I was pregnant lol. It hurts my husband's feelings, poor guy. He cooks fabulous meals and I just sorta . . . stare at them.

It looks like some further investigations may be necessary I think! My rhuemy knows about the 'flare ups' but believes they are mechanical issues only (something showed up on MRI and X-ray of issues with my L5/S1). My concern is that if what I have is mechanical, is it strange that with painful episodes that I seem to have chronic tummy issues at the same time. The reason I find it so strange is that I NEVER get diarrhea,I've spent half my life wishing I had it as I am always bound to the eyeballs (so to speak!),but lately I am always suffering with diarrhea when my back plays up. I went to see a physiotherapist the other day to get some pain relief and that helped to some degree but I am sure I was left with brusing as they have to rub so hard to break up the muscle spasms (spasms were that bad I was hunched over and tilted to the right side and couldn't even stand straight.) I have another appointment this arvo so am hoping to be out of pain soon as I can't take any meds because I can't eat! Taking my NSAID's and pain killers on an empty, sensitive tummy is probably not a great idea, so I am hoping the physio might do the trick. If it isn't better soon, my next visit will be with a chiropractor as after a while the pain starts to do your head in.

I have thought about getting a second opinion Erica but feel bad as I have only been to this guy twice! And the beauty is that he doesn't charge me anything....

James, that is where I get confused as to what is wrong with me as alot of my symptoms point to AS but the actual proof (MRI and X-rays) did not? But like you say excessive inflammation could cause the stomach upset so it could be either or? Maybe it is just mechanical but as it is so severe I get to have all the other fun bits attached!!

I am thinking you are right there Sue, I have a referral for the colonoscopy but I think I should also get one for an endoscopy too as I have had a scan previously that picked up inflammation in my small intestine (I believe that you need an Endoscopy for that part???)

Haha Donette! Bruno sound like a friendly chap! LOL!

You are very lucky Barngoddess to have a husband like that. I am so used to doing absolutely everything here (including anything to do with our 3 year old daughter) and I think that is why this is all hitting me so hard. Over the years I have had to get used to being independant and doing everything on my own and at the moment I can't, so hubby is having to step up to the plate for once and is whinging every step of the way!

Tarnip, your case sounds very similar to mine. About 5 years ago, the chronic constipation began. Before this, I had 30 years of absolutely no digestive issues. Then everything fell apart. Shortly after, the terrible spondylitis pains began (in upper neck). I DO think these things are connected!

I've had 2 colonscopies, and both docs told me I had a redundant colon with a slight twist. They discouraged me from surgery, but I'm beginning to think someone needs to do something. My colon simply doesn't work.

Humira didn't help the constipation, but it at least suppresses the terrible nausea that the spondylitis causes. If you can find the right treatment, this may at least help you manage!

Sorry you are receiving no support. This condition makes you feel so lonely, and I can imagine it would be even harder going through it with someone who isn't coping well. Prayers for you!

Hi Tarnip.
Sorry. I didn't mean for it to come out like that. I didn't mean to imply that you might not have AS at all. I was thinking that you already do have damage done by an arthritis, and quite possibly it is AS (or pre-AS), but I was thinking that maybe you might also have a problem with an IBD. For some people different types of spondy conditions go hand in hand.

Being that there are many HLA-B27 linked conditions that can lead to inflammation in our spines, our doctors can't make their diagnosis-es of AS until they can see what they recognize as fusing. AS doesn't necessarily have to have 'fused' joints to be AS though, at least that's my opinion. I think a mild sign of beginning to fuse (sclerosis) in a single joint in the spine or SI joints is enough to assume AS, especially if the person has the genes. Signs of fusing can take years to develop though.

I'm like the others, I think a second opinion might be helpful. If that isn't possible, you might be able to find another radiologist to review your scans. I think having your digestive system checked out by a gastroenterologist would be helpful too.

Take care.
James

i've had enough scans now that if there were any significant fusing going on, i think it would be picked up by now. so that is why i was diagnosed with undifferentiated spondyloarthropathy, because i have the inflammation at the entheses (where the tendons and ligaments attach to the bones), which is "the hallmark of the spondylarthropathies" (read that more than once) but no evidence of fusing. it can be much harder to diagnose spondyloarthropathy if there is no radiological evidence, but a good doctor can put the pieces of the puzzle together; i had to go out of town to find one that could though. a good doctor can do the differential diagnosis between mechanical pain and inflammatory arthritis, but a lot of doctors miss it, i had 4 rheumatologists miss it before the one in philadelphia understood what we were looking at.