Time to break my blog silence.

Today I increased my Prednisone (steroid) dose to 40 mg daily. Again. For some reason, whenever I get the dose down to 10 or 20 mg daily, I get a small bowel obstruction. Ouch! I try to keep the amount of Prednisone as low as I can without sparking symptoms. Dr. Cutler, my GI doctor, says I should use whatever dose is necessary to control my symptoms. I need to be as well as I can be for our trip to France next month. So I decided not to try weaning off steroids completely before we go. I don't want to have a crisis so far from home. Besides, I want to have fun!

I got the Prednisone down to 10 mg this week with relatively calm GI symptoms. But after lunch with my daughter, Amy, that old, familiar cramping a little below my right rib cage and super-intense thirst sneaked back up on me. So it's 40 mg Prednisone daily along with my other prescriptions for now. And, as evidenced by my writing this blog at 1 am, the side effects aren't going away any time soon.  

Insomnia. In spite of taking Amitryptiline and melatonin before bed, I lay awake, mostly scratching my itchy shingles rash that appears all but gone, but feels as real as ever. In some ways even more so. Did I say it itches? Oh, and you'd think that the Benadryl I took would stop the itch and send me snoring. Not so far. Sigh.

 Weight gain. I weigh about 20 pounds more than I did on My daughter Megan's wedding day last October. Pendulous abdomen, extra fat between my shoulder blades. Four chins. Square, furry face that requires 3-4 shaves weekly. For the past 10 months, my Prednisone dose has yo-yoed in cahoots with repeated small bowel obstructions that always (so far) resolve with increased Prednisone doses.

None of the diagnostic tests I've had tell us why this happens, where in my bowel the obstruction occurs, and what sort of lesion or inflammation is occurring. One reason I speculate that this might be is because they never look for the cause while I am obstructed. It's always later when things are moving through again. Dr. Cutler wants me to have a capsule endoscopy test. I would swallow a radio-opaque capsule that is designed -- same size as the camera capsule -- to be sure that it can get all the way through. If there's a spot that's too tight to get through, it will stay there long enough to get x-rays, then it will dissolve. No harm done.

 That sounds much better than my adventure in 2004. Then there was no dissolvable capsule to test for strictures. The camera capsule got lodged in my terminal ilium and stayed there for months. I lost 50 cm of diseased bowel in the surgery to remove the camera. I saw photos afterward, and Dr. Sklow, who performed the surgery said some areas were so Crohn's-Disease scarred, the inner lumen would be a tight squeeze for a strand of yarn. He still uses the bowel section, camera and photos in the surgery class he teaches at the University of Utah Medical School.

 Thursday I have a lot going on, and I haven't had the capsule endoscopy yet, so I cancelled the appointment I had scheduled with Dr.Cutler. My thinking was that I'd reschedule for after I have the capsule endoscopy. Then we'd have new information to explore. Now I wish I'd kept it. I'll call in the morning to see if he wants me to come in after all. Maybe they didn't fill the appointment yet. Maybe this is a chance to look for a stricture while it's still there. We'll see. I just hope my first granddaughter did NOT inherit my gut!

 Enough for now. Maybe I will get a few winks in before the alarm goes off in 6 hours.

Take care! Beth