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Crohn's Disease Forum » Your Story » Lost in the woods, or, am I buying my Dr a new Ferrari


02-25-2014, 06:12 PM   #1
Asymptomatic
 
Join Date: Feb 2014
Lost in the woods, or, am I buying my Dr a new Ferrari

Some pertinent facts:
57yr old male{asian/WASP gene pool}, 6 ft, 267lbs on super bowl day 2013...this was 1 month after my 8th orthopedic corrective procedure since 2007.
All"major," general anesthesia episodes.
Additionally, I have degenerative disc disorder, prior MAJOR spinal surgury, stenosis, yadda, yadda, yadda...15 yrs ago, condition so deteriorated that 2-3 months of the yr spent catheterized, and in bed with IV painmeds.
Finally, inserted into 1 of nationally known and oldest pain management programs in the US. I've been on titrated-lifetime-lomgterm narcotic based pain management ever since. It was a life changer: from crutches and crawling to toilet in morning, to only a cane, to no cane, to working again, to racing sports cars again...truly remarkable-but at a cost: I'm tethered to a Pharmacy every 30 days(not a day sooner, nor later, lest you start being viewed askance by the powers nat be...).
It was like I sailed over the edge of the galaxy...within the next 90 days, I'd lost 30-35 lbs. Went to see Dr., and they shrugged, drew blood, said it was good, that I needed to lose some weight any ways...
I kept losing-relentlessly...this despite an appetite and itake of food which would stun readers(at the age of 47 I could STILL bench press 435lbs, and at 53: 325 no problem(56-54" chest with a 34-36" waist-for reference)..the weight just keeps dropping, no clothes fit-I'm now really concerned once it hits 50lbs in 6 months...
now, finally, the orthopedic, AND my oncologist is paying attention: MRIs, PETs, more blood work, contrast CTs, stool samples, drug testing, dosage monitoring, full physical...nothin'...
At the mid point of the football season, it is now pushing 70 pounds since february...slow and staedy-but sure as a sunrise...
Colonoscopy and edocsopic(top and bottom)exams ordered, as I've now been sent to gastroenterology dept.: biopsies, cultures, etc-both ends...
My [post scan consult started with: "What's stunning is that you are between grade 3 and 4 esophogeal corrosion/erosion grade-yet have ZZERO syptoms and complaints. Yet your vocal chords are VISIBLY scarred from the acidic relux damage! The precursor viral exam for the Japanese stomach cancer syndrome was negative(I'm a huge genetic risk on this one-fwiw), polyps in colon-no biggie-nonmalignant. However, there is a RAGING infection in small intestine adjacent to the illeocecal valve, which required a month of eating cipro tabs all day long in order to subdue!
Additionally, there was an enormous "gaseous bubble" in the rt lower(illeocecal zone)and upper rt quadrant of thoracic cavity...intestinal wall porosity seemed unlikely: as i shoul've expired due to septic shock-IMO...
2 months of chasing this, pills, pils, pills, lots of x-rays, more CTs with contrast....no change in size...
"We gotta go back in-after less than 9 weeks-we redo the top and bottom scans...tentative Crohn's, ulcerative colitis, illeitis, IBS(what's left remaining on the menu?) diagnosis?

Post exam: "Infection is gone! We MIGHT've been chasing a red herring on thbe gaseous bubble pocket, however" Returning to the initial post scan consult was the issue of esophogeal erosion which is at Barretts stage-I'm told-that unless this is revered and brought uder control ASAP, I WILL have cancer in 3...5yrs at the outside. Well, THAT got my attention...so, a couple more months of: pills, pills, poi;lls, and x-rays, etc(see above)...
Ecstatic Gastroenterologist states: Its gone, we can culture your throught to determine Barrets condotion or not in six months, as tissue MUST be healed amnd not erupting...OK...but I came here with no pain, no real complaints of ANY of the stuff you guys chased for 5-6 months...
I've lost EIGHTY pounds like a clock, and its NOT stopping-WHY?

the kicker is: that for 9 months, my died has been so closely monitored, and recoreded that the real question is:
How do yopu eat 3500-5000 calories a day, no animal fats or meats, no more 6 cups of french roast per day, fo chocolate, no sugars, no legumes, no lettuces, no apples, nuts, alchohol, and nealy no tobacco(i started 3-5 cigs a day n8 months ago as a self medicating of my upset stomach, only to discover this seems to be sort of commeon form of self medication for people with IBS!
No matter, smoking goes within the month..I spend 30$/day, shop EVERY day at supermarket, eat 5-8 times per day-its a CHORE...
AND remeber from above, in chronic pain clinic-so, I take at least 180MG/day of ER Morphine sulphate, AND 30MG of oxycodone every day of my life-AND i have ZERO constipation issuesZERO(1-2 times a day, and its NOT laying bricks!)-only comical, 3rd grade boys would love it, monumental, thundering, flatulence(oddly-ZERO 'odor') for the hours of 1-5PM-like clock work.

The GI guys are now punting me to endocrinolgical guys-this after a yr at Harvard seeing the guys at Jocelyn diabetic hospital in '09 ...I have staggering ups and downs with my blood sugar levels which ultimately-after 9 months of flying in every 2-3 weeks for a work up-was determined that the guys at Sxxxxd "screwed up and missed some thing in the skull MRI"-dollars to donuts its glandular: pituitary, thyroid, etc, etc...

Problem is-in last 6 months, almost every one of these "screening" tests for levels and function have been done, redone, and done again...

At the end of the day, I am still losing weight...2lbs a week on avg since 1-1-14...if I DON"T eat as described above-for ANY reason, I will lose 10 lbs in a week as I did 2 weeks ago on a trip to LosAngeles.
I have lost muscle mass, fats, all of it...I am stating to have lung problems again...my arthritic extremeties feel great! Best in decades-pain meds might be lowered in summer...but, maybe not: My back is KILLING me worse than ever...and the first thing in that arena is ALWAYS: LOSE SOME WEIGHT!
{no cancer anywhere-tested a zillion ways}
I reviwed my bills and co-pays for the last year and have concluded that for more than one dr, I easily have bought a couple of new Ferraris!
yet...I remain undiagnosed, asymptomatic, and the incredible shrinking man!

At the threshold of 160 pounds, this will be considered-i'm told-a life threatrening condition..thats 20-25 lbs away....May?

They have tested EVERYTHIMG under the sun, and as for the activity load, sedentary would be a nice way to describe my activity level, and, as for my monitoring my diet, I am Ivy League educated and actually spent 2 years in med school in the 1970s(why the Drs are VERY careful what they say to me...), thus not likely I've erred in this area...

WTF is going on, does ANYBODY have a similar story with a RESOLUTION WITH ANSWERS?
02-25-2014, 06:42 PM   #2
durwardian
Senior Member
 
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This will take a few readings to sort through...
02-25-2014, 06:46 PM   #3
durwardian
Senior Member
 
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My first guess would be old-fashioned wasting... like a curse. But back to scientific. I got down to 140 before trying some radical things. One of those was eating sanitized dirt...
02-25-2014, 06:49 PM   #4
durwardian
Senior Member
 
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My loss and wasting stopped after peroxide and DMSO treatments. But all they ever figured out was that my immune system is out of control.
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