Update: Sacroiliitis diagnosis

[GoJohnnyGo]

My results are in and I officially have Sacroiliitis, which is a manifestation of Ankylosing Spondylitis (a type of arthritis) which is in both my sacroiliac joints at the base of my spine. In turn, this all was caused by an immune system out of whack because of my Crohn's flare.

The X-Rays have in fact shown my spine has fused at the base, with a bit more fusing near the neck. I require extensive physiotherapy, and may need surgery down the road.

The Gastro has put me on Entocort, which he explains as being a prelude to Remicade or another biologic.

I'm going to try going off the Prevacid, as I don't seem to be having as many Reflux issues now, but will continue on the full dosage of Asacol. Outside of the diarrhea, some of the Crohn's pain seem to have stabilized.

I'm gaining a bit of weight (@ 10 lbs) -- which I attribute largely to quitting smoking three months ago.

 

[jed]

hey, thats the name of the arthritus i have which i keep forgetting the name of!

welcome to the club, and yes definately get a parking permit

 

[GoJohnnyGo]

It's tough keeping up with all these disease and medication names. It's not so much a glossary -- more like there was an explosion at the Alphabits factory!

 

[kello82]

lol explosion at the alphabits factory hah hah!

sorry to hear that your spine issue is so extensive is it something that continues progressing? or does the physiotherapy help with that?
glad to hear youve put some weight back on though, on the other hand.

and im glad to see your avatar back lol! i missed it!
have you ever seen the show Good Eats on food network? Alton Brown (the host) is one of my faves, and i think you look a tad like him

 

[kromom1]

Sorry to hear about the diagnosis Johnny. Hope the PT will help and you won't require surgery for it. Continued kudos for quitting smoking!!!

 

[My Butt Hurts]

So what do you do for that new diagnosis? Just live with it? More medications? Does the physiotherapy keep it from getting worse, or not for sure?
Glad you gained a bit - that 's a good sign, right?
Entocort was similar to pred, I thought.
Have you been on biologics before? Is he going to start you on them?
Do I have an asking questions limit on this thread?
Am I done now?

 

[Creepy Lurker]

My father has Ankylosing Spondylitis. I sometimes wonder if that's where my Chron's came from as well.

 

[GoJohnnyGo]

Hi gang, thanks for the support.

The Entocort is more a case of having to jump through hoops to get approved for biologics. Insurance and Provincial Healthcare want a paper trail showing all less expensive options were explored.

Remicade is the one my GI suggests, as it's also used to treat arthritis.

Considering the state I was in last summer, I'm making some headway as each problem gets isolated, diagnosed and treated.

Creepy: Ankylosing Spondylitis is thought to be strongly hereditary in origin. I'd keep an eye on your aches and pains.

 

[jed]

hey GJG,

is it you thats in the newspaper industry as well?

do you sit in an office all day long?

that used to kill my hips doing that, until last weekend. i went to a wheelchair store, and for around $70au they have these memory foam cushions that people in wheel chairs use to keep comfy. since using that, i am having no pain in my hip at all from sitting all day long. it is so good!

 

[GoJohnnyGo]

hey GJG,

is it you thats in the newspaper industry as well?

do you sit in an office all day long?

that used to kill my hips doing that, until last weekend. i went to a wheelchair store, and for around $70au they have these memory foam cushions that people in wheel chairs use to keep comfy. since using that, i am having no pain in my hip at all from sitting all day long. it is so good!

Thanks for the suggestion. I have had a personalized workstation that's fairly ergonomic the last year and a bit, so that really hasn't been a problem. Previously though, the chairs, desks and monitors were standardized throughout the department, so it was more an issue then.

It's more of a tailbone/internal pain issue over hip problems for me. Stuff like going up stairs, moving about. But I'll see what a physiotherapist suggests.

 

[jed]

tailbone you say good sir?

then this is the one for you, take away about 75% stress on the tail bone.

you'll be shakin your tailfeather in no time

 

[BWS1982]

My father has Ankylosing Spondylitis. I sometimes wonder if that's where my Chron's came from as well.

lol Creepy, your "Chrons" came from a misspelling...

Well, Johnny, answers provide mental relief, sometimes, to which this may be good news in the big picture, and perhaps it's a good thing that your immune system is the culprit again, rather than having another, unrelated dysfunction...I think....

 

[Agent X20]

I like the memory foam butt cushion, Jed... might investigate that myself, as I've had a hip replacement and also suffer from "bony arse syndrome"

 

[jed]

its silly agent, but seriously, one piece of memory foam has hugely improved my life.

about a month before my holidays (maybe 3 months ago), i had a steroid shot into my hip because of he pain from my sacro joint arthritis thingy.

that kept it good for the 4 weeks before my holidays. my 4 weeks holidays were spent in much more comfy conditions so nothing happened during that time.

i went back to work for 1 week and was already limping and requiring my walking stick again. i had a sheeps wool cover on my seat at work, but that just wasnt helping anymore.

i got this memory foam thingy a couple of weeks ago, and since that time i havent felt my hip at all! it has been so magnificent. has changed so much in my life.

i can even stand at the sink doing the dishes now, can easily take the bins out, can vacuum and sweep around the house (wait a sec, is this good stuff??), all because my hip is not been murdered by sitting on a bad chair during the day..

note - its actually a really good chair supplied by work, one of the best you can get, but even that wasn't enough. this foam is great.

 

[Agent X20]

I actually have a memory foam bed... quite expensive, but we've had it for over 7 years now and it's still going strong. During the worst hip pain, leading up to my operation, it made life tolerable, and has been excellent post-op. My wife also has trouble with her back and it has helped enormously. Now a cushion for my chair may make my life complete!

 

[Creepy Lurker]

lol Creepy, your "Chrons" came from a misspelling...

*GAH*

It was really early in the morning, I was tired! My fingers weren't working working!

Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's Crohn's

 

[kello82]

I like the memory foam butt cushion, Jed... might investigate that myself, as I've had a hip replacement and also suffer from "bony arse syndrome"

bony arse syndrome for me too!
my tailbone is like an elbow lol

 

[Shoeless]

I have what you have and Ankylosing Spondylitis. I love crohn's the disease that keeps on giving. They put me on Humara. The insurance company wanted them to switch to endocort but my dr said no because it doesn't do anything to help Crohn's

 

[fateful_one]

I love crohn's the disease that keeps on giving.

HEHEHEHE You make me laugh! Thank you.

 

[soupdragon69]

Hey Johnny,

Sorry they added another to your list of ailments but as you say at least you know what is going on now and are getting the right treatment.

Remi is a big help for both crohns and arthritis and I do notice an improvement when I have mine. Sometimes they will put you a combo of meds like Remi and Methotrexate as both drugs work well in conjunction with each other and can be taken for both conditions.

Keep us posted on how you are doing!

 

[kello82]

just gonna second what jan said-
i was on remi and methotrex combo and it did really good things for my crohns, better than remi alone for me.