New technology, same old $hit

Technology is not my friend.  Wait, let me rephrase: I am not technology's friend.  I maul, nay, kill phones, computers, DVD players, and assorted men.  So, after killing my last phone I finally bought an android smart phone.  I then downloaded the "poo-poo diary" app.  It enables you to record your individual BMs, time, size, color, and any specific notes you desire.  I have been recording my BMs (and have managed NOT to kill the phone - go me) for the past three weeks, and while I will save you the details (you're welcome) I've discovered: I poop; a lot. Anywhere from 5 to 25 times a day. (Okay so I shared some details.)

This doesn't surprise me. But it can be disheartening to see it all laid out on a calendar.  Especially with my GI telling me that my Crohn's appears to be under control and it is in fact my IBS that is causing my "active-like" symptoms.  Twenty five times a day feels a bit excessive for IBS. 

I am pending a referral to Mt. Sinai in NYC for a second opinion.  It can't come soon enough. 

Too much, too soon?

Due to excitement about life changes (loss of job, start of school) and an influx of some green (due to well placed investments) I spent the last few days out and about. I mean, I actually got up and out of bed prior to 9 AM, showered, dressed in non-lounge or pajama style clothes and left the house. Three days in a row!!!! Considering I was inpatient less than three weeks ago, and earlier this week taking a shower resulted in requiring a nap , all of this is quite an accomplishment.

The downside to all of this activity is the resulting exhaustion. My brain is still awake and ready to go - my body? not so much. I'm bone tired. Have you ever been bone tired? It's the kind of tired where you lay in bed giving yourself a pep-talk: "C'mon, you have to get up. You don't have to leave the house, you don't have to get dressed. You don't even have to look in the mirror or brush your hair, but you can't pee in bed."

I need to remember that short spurts of energy are just that: short. And moderation is key in everything; including moderation.

Hello from hiatus!

So. . . It's been a while. Life has continued on and so has crohn's - and the return of what appears to by my annual flare. After a relatively easy going summer - symptom wise, the onslaught of fall, its weather changes, and the trials of being a Type A personality in a Grade D functioning body brought on the joys of a new flare that showed its face right around Halloween. In hopes of getting ahead of stress and symptoms, I preemptively went out of work. To no avail, symptoms continued to worsen, leading to upwards of 15 BMs a day, blood and mucus.

Pain and dehydration, and repeat ER visits landed me inpatient for 5 days just prior to Christmas. The Christmas eve discharge left me with a new cocktail of medications now including Cymbalta, Zofran, Prednison (no taper - nice steady dose of 40 mg), Ativan, Purnethol (6MP), Nopramin, Humira, Hydromorphone and Oxycodone, and steroidal suppositories.

I saw my GP/ PCP last week and he (for not the first time) suggested a referral down to Boston. It has been the 5th hospitalization in 3 years. Back and forth to the ER for dehydration refills, with no true respite from continuing pain. The referral to Boston would be to a larger teaching hospital to have my case evaluated by a new set of eyes and determined if this is the most appropriate cocktail for me.

I will need to start tapering the steroids soon, and that is always when internal bleeding begins again (not that it has truly stopped at this point). So as we wean this, we increase that. I've been doing this hokey pokey for three years now, and I'm all shook out. I see my GI this Thursday to discuss referrals and a'Boston I will go.

Even though the daily battles continue, (BMs numbering between 4 and 20, with mucus, blood and pain, fatigue, and satanic moods -thanks steroids!!!) - I know these will subside as soon as the 6MP fully kicks in around the 6 month mark. But will it continue to work? It hasn't in the past. The hope for an evaluation in Boston is a knowledge of a better cocktail that will sustain the equilibrium for longer than two or three months at a time. If I could have that, then I could conquer the world, Pinky!!!! Or you know, stay employed and maybe finish college.

Now. . . where to fit that life part in again?