My last day at Mayo

Just posted this on the Crohn's board as well...

Well, I thought I might have a diagnosis by now.  I thought maybe it was just the fact that my docs in Alaska were not all that bright, or maybe hadn't thought of other possibilities out there, or maybe their methods weren't sound.  So I used 50,000 air miles to fly me and my best friend out to Minnesota, hoping that what I'd heard about the Mayo was true - that they'd be able to find, for certain, what is causing so much distress.  I spent money on lodging and food to give the doctors time to thoroughly investigate my case.  Worst of all, I subjected myself to two more scopings, innumerable pinpricks, ridiculous diets, liters of contrast medium, and a week away from my home for the sole purpose of getting an answer and a quick fix.

The end result: the GIs here are positively baffled.  Baffled that I can have such terrible diarrhea, with blood now, in the middle of the night, whenever; fevers; leukocytosis; that huge weight loss; and still have a perfectly normal bowel.  They found absolutely nothing in their biopsies besides those areas of erosion, which they said did not mean anything significant.  My CT scan was normal.  They found blood and white blood cells in my stools, and fevers all week long, which they could not explain.  They told me that they have no explanation at all to what this could be, other than a long-lasting post-infectious irritable bowel, for which treatment is a guessing game.  Tincture of opium, he said, might help.  That and Levbid, plus a daily dose of Citrucel - maybe that will help me through.  For who knows how long.  He said maybe down the road a bit he'll need to contact me for a new research study to highlight this bizarre illness.  Just great.

I am grateful it is not cancer, or IBD, or celiac disease.  I should be more thankful that I DON'T have an answer, I suppose; I know that whatever this is will not be life-threatening.  But it sure is pure misery.  And I'm sure you all know how I feel to some degree.  My doctor said this feeling is normal, and he would hate to be in my position or have one of his same-aged children in my position.  I just feel very helpless right now, very discouraged.  The fact that I had the big D 18 times today and very little sleep last night does not help.  I know what I'm going to do - go home, take the drugs every day, change my diet after some research, and hope for the best - but now all I want to do is cry a whole lot. 

I'm sure you guys know how I feel.  Hopefully I'll be able to be of some help to you now that I've been through the run-around a whopping TWO times.  Thanks for all your support.

Thanks for checking in, Lil!  My two weeks post-Mayo has been fairly uneventful...I've seen my PCP twice and she is being awesome, 100% behind me on this.  Willing to work with me instead of running as fast as possible in the other direction.  She wants me to do a Prometheus test for IBD, is waiting for a culture to check for gut TB, wants some IgG and IgE antibody testing done for food allergies, and wants to send some blood and stools to this alleged "parasite guru" in Arizona she knows of.  She's a regular M.D., an internist, but works in a new center with a couple of naturopaths and a nurse practitioner.  She doesn't have that god-complex that many specialists I've seen have, and she's open to so many more options. 

I tried the Levbid/Lomotil combo twice a day for 10 days; but I still had crazy D.  I think the Levbid was effective for the cramps, though, which haven't been bothering me as much.  It does kind of dry me out a bit, though.  She thinks I'm malnourished after all this D and so put me on a good multi-vitamin with extra zinc (which supposedly helps some people with Crohn's disease), a fiber supplement to bulk me up, Questran for the days I'm like a garden hose (usually 1-2 days/week), and increased amounts of probiotics for now.  She also told me to stop taking Zoloft, which I've been taking for three years, because she thinks it could be contributing to the diarrhea.  I've been tapering for a while now, so going from 50 mg/day to none shouldn't be too bad.

I've had fevers every day for a few days now.  Little ones, like 100 degrees, but enough to make me feel run-down.  I've been slurping down the Tylenol like a crazy woman, but it doesn't seem to affect the temperature!

Today has been very bizarre indeed.  I've gone like 8 times today, but all my stools have been soft and formed, which is a big deal for me.  I haven't taken the Lomotil in a couple of days.  I wonder if it's the fiber supplement or what? 

Anyway...that's the news here...I'll update as I get new info.  Thanks for the unwavering support!!

Franky...they did a stool culture to see if tuberculosis is settling in my gut.  I was exposed to the lovely TB when I lived in Africa and spent nine months on isoniazid, an anti-TB drug, but the docs said it still could be lurking around in there and causing this nastiness.  I kind of doubt it, but who knows?

I am totally going to start a diarrhea and a fart poll.  And maybe a "how many of us are 20-something spinsters living in apartments that smell like cat pee and diarrhea?" poll.  Let me see if I can figure out how to do it.  If I can't, someone should!

Hey Keri, join the 26 with IBS club!     Looks like I have to get myself a cat.  j/k

I thought most people farted in their sleep.  Your body doesn't care if it is awake or sleeping... when you have to let one go, you have to let one go.  It is especially easy to pass gas while sleeping because your sphincter muscle isn't tense, so it just comes out.  LOL  Scary when you think about having a "sleep over" with someone for the first time.