Update: See, I told 'em I was sick!

[GoJohnnyGo]

Back from the Gastroenterologist (finally!) today.

Pending some X-Rays, he is all but certain I have an advanced case of Ankylosing Spondylitis related to my Crohn's (which he thinks badly flaring at this point).

I am also scheduled for a small bowell follow through.

I also have an anal fistula which will need treatment.

Pending results of the tests, I'm probably looking at Remicade treatments.

 

[mommy1st]

At least you have a plan now, hope everything goes quickly to get you the proper treatment. How soon is your small bowel follow through?

 

[GoJohnnyGo]

Sometime in the next few days, or early next week.

I've been pushed to the top of the list.

 

[mommy1st]

Good for you, the sooner the better.

 

[My Butt Hurts]

Well you FINALLY got some answers!!
And it sounds like you'll have some more soon after the follow through.
You TOLD them! Why oh why didn't they just listen?? (duh)
Good luck on the rest of your answers.

 

[Colt]

Congratulations on your new treatment plan.

 

[GoJohnnyGo]

Well, I had finally reached the breaking point. I told the gastroenterolgist's receptionist that I really had no other choice but to turn to quacks or look out-of -province because I simply wasn't going to endure seven months more wait.

So she booked me right way for the next day.

Ankylosing Spondylitis is basically Crohn's-induced arthritis in the spine and pelvis. My immune system is also flaring there. If untreated, it can cause something called "bamboo spine" where the vertebrae fuse together.

Asacol isn't working for my Crohn's anyways, so the next step are the biologics. Remicade is sometime prescribed for both, so that's what we've discussed.

 

[kello82]

wowgood job on being assertive, that is something that i have alot of trouble with when comes to dealing with docs.

how did you know about the AS in your spine? (ill abbrevaiate those long words lol) did you have a lot of pain there?

the remi took care of my first fistula when i started it years ago. hopefully it works out for you. good luck

 

[Agent X20]

Never knew AS was related to Crohns. I know a little about AS as the guy my second wife ran off with suffered from it. Strange they described it as "advanced".. as Kello says... did you have any pain/stiffness?

 

[jamie2462]

yay for remicade. Hope they get you feeling better soon..and as little fun as I had from my "fistula repair surgery"- A DRAIN, it feels much better once those bad boys are back under control.

 

[GoJohnnyGo]

Yeah, I've had lower back/back of legs pain for a long time, but was told it was sciatica. I'd pop an ibuprofen or a Robaxacet whenever it acted up. Mostly I've just lived with it all along, not tying it to any of my gastrointestinal problems.

 

[jamie2462]

mmm and those bad boys hurt too eh?? I have some back pain besides, but I would rather the back pain then the shooting pains and "burning cheeks" (the only way to word it....LIke a fire in your right cheek I guess. Oooooow mommy.

 

[Collette]

GoJohnnyGo, what kind of back pain problems are/were you having that led you to your diagnosis?

 

[GoJohnnyGo]

GoJohnnyGo, what kind of back pain problems are/were you having that led you to your diagnosis?

Lower back and pelvic area. Shooting pains up the spine and down the back of the legs. Really stiff and sore in the morning.

I was getting acupuncture last year from a licensed Chinese practitioner, which helped to a degree. Then he abruptly told me he wouldn't treat it any further unless I signed a waiver, because he thought a regular doctor should look at it.

First thing my gastro said when he had a look at me was that it was AS.

 

[Collette]

I love this site. Thank you GoJohnnyGo! I have been feeling like a crazy person for a long time.

I feel like I drive my husband crazy with all of my complaints and my doctor never seems to have answers. I have been dealing with bad headaches because I have felt horrific pain in my neck. My doctor first prescribed a migrain cocktail consisting of an assortment of strong drugs used for depression and bipolar. Apparently small doses calm the brain stopping headaches.

I insisted that it was not migrains, it is my neck. The doctor did a brain CT scan which was negative for a tumor etc...so they wanted me to continue treating for migrains. Not convinced and certainly not wanting to stay on these drugs, I quit and went to a chiropractor. I had adjstments which I was not a big fan and it didn't take care of the neck problem. Headaches are gone!

Meanwhile I have also had episodes of chest pain which has scared me and my husband of possible heart attack. I have a strong heart and low blood pressure. The doctor told me that it was esophogial spasms and gave me previcid.

I complain of my chest feeling heavy and shortness of breath. I complain that my spine hurts and lastly I am tired ALL the time.

I read about Ankylosing Spondylitis and it fits ALL these problems. I don't feel crazy and I am going to ask my doctor about it so thank you for the post.

Sorry for the long post but maybe someone else can benefit from my complaints and find their own similarities.

 

[GoJohnnyGo]

How's your iron levels, Collette?

Heavy chest and shortness of breath could be signs of anemia.

I've actually been taking iron supplements, which have made a slight improvement, but my iron levels are still low. So I'm having absorption problems due to Ankylosing Spondylitis.

Hell, I've never heard of Ankylosing Spondylitis before this past week!

PS: I'm also on Prevacid.

 

[Agent X20]

I always thought that AS affected the upper spine... sort of level with your shoulder blades. Maybe I don't know that much about it!

 

[drew_wymore]

I'm glad you're getting some treatment GJG. It really sucks that you have to suffer to freaking long until someone will take you seriously.

 

[GoJohnnyGo]

I always thought that AS affected the upper spine... sort of level with your shoulder blades.

Yes, that's where I feel it too.

 

[MINI Cooper]

Glad you got some answers. Looks like we may be taking remicade at the same time eh?