Posted 9/10/2007 1:10 PM (GMT -8)
Hello all - new to this forum, and officially new to the disease.
A little background:
about 10 years ago, when I was 22, I got this "mystery illness" - chronic diarrhea and tremendous weight loss (in the end I went from a nominal weight of 145 down to 115). I was waiting tables at the time so didn't have anything in the way of medical insurance - I did go to a clinic and they sort of shrugged their shoulders and told me "IBS". In the end, I suffered through it and it eventually went away. I met my wife at around that time, and once she moved in my diet changed around to less "convenience" food - maybe that had something to do with it going away.
Fast forward 10 years later, late June, I start getting abdominal distention and just a general feeling of "something is wrong down there". Then comes the unformed stool. Then the weight loss. I am a programmer for Florida Power & Light and we have a clinic at our headquarters in Juno Beach, so I go downstairs to see the doctor. Guess what - another "must be IBS". He tells me to start taking a fiber supplement. A few weeks of this and I start getting headaches, all the time. I figure it's a sinus infection since I get these alot so I go downstairs again. See someone new, she gives me a scrip for an antibiotic and tells me to take Advil for the headaches. So I do. Lots of it. A few more weeks of this and BAM - a veritable bloodfest in my next BM (sorry for the graphic there). Freaked, I go to our local hospital where I'm immediately admitted. Tests, tests, and more tests. Xrays, CAT scans, blood tests, colonoscopy, - GI Doc at the hospital says, "Yup - it's Crohn's". *Sigh* Truth be told my wife and I are fervent internet diagnosers, so for the worst-case scenario this is, at some level, what I already suspected I had.
So liquid diet sans dairy and 40mg prednisone (this is a traditional GI Doc here, no top-down) and Asacol, Protonix, a short course of 2 antibiotics and a multivitamin and he discharges me. Two weeks of this and now a followup. Antibiotics are done, graduate to a low-residue diet, and start tapering the Pred.
Headaches gone (it was the dehydration from the D, duh). Stool starts to look good again, brown, formed - we're talking "reference poop" here (as an aside it's amazing how desensitized one gets to hauling your butt out in front of multiple strangers and talking about your inner poo with family and doe-eyed friends). Abdominal distention (I like to call it "The Rotgut") still there, especially after a long work day, but not too bad.
Anyway, all seems to be going well until last Monday, distension starts coming back full force and so does the unformed stool. Oh well. Call the doc, puts me on a clear liquid diet through the weekend (god I miss salad) and wants to see me today.
Sooooooo today I go to see him, wants me back up to 40mg Pred a day (I had tapered down to 20/12.5 when the Flare restarted) and has now put me on a 6MP - Purinenthol, 50mg.
So that's where I'm at. We'll see how this goes. Right now, I'm mainly in reading and learning mode. I know there are so many options, combinations of drugs, alternative therapy, herbals and supplements, diets and no end of opinions on this thing. I don't even know if I'm going to stay with this GI Doc. He's nearly impossible to get a hold of when you want to ask a question, but for now his approach seems traditional. I suppose I should give that a try first before I start eating dirt or worms or other wacky things.
My biggest discomfort is the abdominal distension - I can't sit for any length of time - standing or laying down is fine, but the sitting kills me - not so good for a programmer.
So anyway, nice to meet you all - I'm sure I'll be chiming in from time to time.