A Writer's Life Interrupted #crohns #ankylosingspondylitis

Have you seen those commercials on TV where the man or woman holds her/his tummy and worries about their stomach grumbling?

There is so much more to Crohn's disease than a grumbling tummy so today I thought I'd talk about Ankylosing Spondylitis, a more severe form of spinal arthritis. It is a rare complication affecting between 2-3% of of people with IBD. Unfortunately, it is one of my complications. Once you have ankylosing spondylitis it can cause inflammation of the eyes, lungs, and heart valves. So far, aside from some inflammation in my eyes now and then, I'm good.

AS first appears as a dramatic loss of flexibility in the lower spine. Since I figured this was just part and parcel of my familial lineage (everyone has back problems) I quickly learned which way to move or not. I also learned while very young to pick things off the floor with my toes. Yes, you read that correctly. My toes can pick up just about anything. This great feat has allowed me to live a really normal life while entertaining those around me.

When AS acts up it can be very painful. But, at least in my opinion, not as painful as Crohn's disease. However, it has caused my spine to curve and while it's not pretty in x-rays, you can't tell from the outside. AS can range from mild to progressively debilitating and from medically controlled to refractory. For me, I have active inflammation followed by times of remission. However, this may not be true from a clinical standpoint as my back has experienced "severe deterioration" in the last two years. Pain wise, while I experience bouts of squished discs accompanied by pain in both legs, I think I have a pretty mild form of the disease.

Things you can do to help yourself:

1. Warm baths can work wonders. Throw  in some bubble bath, light a few candles and read a book. Do not use e-readers in the bathtub as that can cause damage. /sarc

2. Someone needs to invent gloves that warm so you can put them on your hands when things get too painful. I use my heating pad and wrap my hands in it.

3. Like most people with AS my pain worsens upon resting and diminishes while moving about. However, when a disc is involved sometimes you just have to wait out the pain and this can take months. *shudder* If that happens, a cortisone shot can help a lot.

4. Do something that interests you. Distraction can be a wonderful tool.

It is important to remember that AS is chronic. And while medication can help, even put you into remission, you must take care of yourself. Consider these things if you suspect you have AS:

1. First onset is under the age of 35
2. Pain persists for more than three months
3. Pack pain and stiffness worsen with immobility, especially at night and early morning.
4. The back pain and stiffness tend to ease with physical activity and exercise.
5. NSAIDs are very effective in relieving pain and stiffness in most patients.

I LOVE NSAIDs. That said, I should not use them because of Crohn's disease. However, I will admit to using them when the pain wakes me in the middle of the night. I think it's because my defenses are down and I just want relief. For my not-so-weak moments, I use Tramadol, which really doesn't work that great, but it's better than Tylenol.

To learn more about AS and its relationship to Crohn's or the other arthritis' related to Crohn's please visit www.spondylitis.org.

(((Hugs))) to all who suffer.

Louann

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