Join Date: Jan 2008
Obscure Problem or Bad Doctors? Gastrointestinal Bowel Colon Intestines Stomach
People... I haven't posted here in a good long while. I have been running from Doctor to Doctor for since January of 2008. I have gone from a nice comfortable 185 lbs to 145 now Unintentionally. Should this be such a mystery?
I am posting here again because I believe that someone out there must have an idea of what could be going on with me, advice of where to go and what to do or not to do.
This could get sort of long winded so I am going to keep it as brief and pointed as possible without throwing my emotions too much ..
40 y/o white male 5'9" , medium-large frame, average lean weight since 20's 180-185, with several runs up to 210 and back down to 180's over the years.
History of high cholesterol, Anxiety, Repetitive urinary tract infections, Irritable Bowel in early 20's (subsided after 1 yr) , GERD, Cervical Disc Damage x 3 , Lumbar Disc Damage x 1 , neuro issues 4 years of Fasciculations Tremors & tingling(told peripheral neuropathy) several years of an intermittent left lower abdominal pain triggered by posture.
Repetitive bouts of this (3 days High Fever, Diarrhea, Vomiting) this has occurred twice in 2007 and once a year since 2003. The last time this happened in Nov 2007 it was different. It happened after a long bout of the left side lower abdominal pain. The pain had started to come on a few minutes to a half hour before a bowel movement. Then after a few weeks the 3 day bout of fever, vomit, diarrhea with acute stabbing pains in all four corners of the abdomen.
Recovered but had stabbing pains in right central upper abdomen for several weeks intermittently. Noticed that my skin bruise easily around this time as well.. Also noticed early fullness, unable to eat half as much portions
bowel habits changed, noticed stool thinner and light colored. occasionally had pellet stool and would alternate between that and hard stool. Appetite decreased to almost nothing, no sense of hunger...
Jan 1st 2008 pain in lower abdomen after meals and went to ER , CT negative except swollen appendix, observed and told not a n issue.
While in hospital, sensation of fire going through back of neck into skull radiating to feet and anal sphincter. (the sensation you get when they inject the IV Dye for the CT) noticed loss of bladder sensation.
Released from Hospital told eat better diet and follow up GI. Next day, frequent urination started, profuse.. several days later , pain in testicles, urology , ultrasound labs all ok,
2 weeks later, had added some fiber and fruits to diet , panic attacks lessened. Feeling better !!! Then, after doing work under a car(awkward position, stressing back) noticed a vibrating sensation in the left upper abdomen . vibrates with change of posture or breathing. happens withing 1/2 hour to a couple hours of bowel movement.
Added more fiber (weetabix 14g fiber 3x daily with blueberries smothered on it) .. now I was blowing my BM's by and they were looking better.. but had a lot of mucous on them .
Then I got the idea to try some steak, Jan 25 th 08 had 1 medium steak and side of roast beef and a salad, several hours later smell on breath of dead animal and some nausea & pressure radiating up into left side of neck.
Next day felt better, went for a salad at the buffet.. that evening , major stabbing pain woke me up 4 am, center upper abdomen, pulsating...
Next day pain was half as bad, didn't go back to ER they were just going to repeat same crap with CT anyway right?
Had a few BM's that day and felt a bit better, had a good lunch and cam back, then had a BM that smelled really really bad like a rotten meat, looked and saw all this floating stuff like oil or greasy lard. A few minutes later a sudden urge to go again, this time it was a bunch of mucous with blood in it .. I FREAKED ..
Went to GI next day, he said (Don't worry) yea right.. The sharp stabbing pains continued, I lost all appetite and stopped eating almost altogether. I was advised Mylanta for pain.. Didn't help.. Doc wanted to proceed with colonoscopy and EGD.. I canceled my appt because I got sick along with my family with a bug, A new problem had arisen, unable to evacuate , have to use finger to dis-impact even soft stool..! then a few weeks later had the scopes done.. he said all looks like a brand new baby inside (boy was I surprised) and relieved . Then he said .. the blood was likely from hemorrhoids we saw while in there.
I resumed a normal diet and within a few days , more bloody mucous.. not from down low, this was brown blood !! I had the cramping again in the colon area and had a follow up appt after one week. The Doctor was rude to me and told me there was nothing possibly GI related going on and to take a laxative for the inability to evacuate and that any blood was from hemorrhoids. He kicked me out and sad " I have real sick people to tend to" I started to feel like there was some conspiracy against me at this point...
I followed up with a few other GI's and got the same impression, " you've had the work up and nothing was found, see a shrink!" So I did, and as with 99% of people who might visit a shrink I was told I need to treat my anxiety with meds.. Kss my *** !! All my Docs shared the same Anxiety/Somatization... Then I got a new primary care.. he ordered a gastric empty study which revealed delay.. but was only a 90 minute test.. (another thing, the test is done while lying down, who lies down right after they eat, that's stupid)
After that study showed some problem , I persuaded another GI at the facility where I was first at to do the EGD over again.. he found Barrettes Esophagus, White Plaques and Gastritis .. I asked if all that could have happened in 2 months , NO.. So the first doctor Missed it !! So, WHAT ELSE might have he missed ion the first examination?
Even though there were new findings, this GI also jumped on the somatic/anxiety band wagon.. was willing however to have a defogram done (anal emptying study) show pelvic floor weakness and lack of sphincter relaxation. So .. then they decided to put me in the psyche ward and force me to take meds, respidol, Prozac and some others.. guess what happened .. blood pressure down,.. they monitored my food intake and weight .. surprise.. still losing weight and body mass after two weeks of supplements (ensure) and 3 squares a day of heaping greasy fatty food..
After a visit back to the GI with more weight loss, I was put on a supplement of PEPTAMEN enteral formula, to see if my intake of calories and fat would improve .. let me note, that all of my labs from 209 all the way down to 145 have been ok except a LOW WBC count a few times.. After I went on the Peptamen Formula i was able to maintain 150 for 4 months. A month ago I had a urologist do a urometrics exam. They have me listed as allergic to levaquin, so they gave me Cipro (levaquin under another name) and I immediately started having belly pains.. within a wekk something started happening as well.. I now have really loud bowel sounds, when they are going on you can actually feel my abdomen shake and vibrate with the sound. it happens mostly at night..
Went to Mayo in Jacksonville, saw awesome Doctor there.. he went over everything and comes up with " has anyone don a fecal fat test?"... NO !! he said that was one of the first things to have been done in a weight loss issue.. so that is where I am now (short version) and trying to consume 100 grams of fat per day so i can poop into a cup and mail it back to them..
So if this comes back as ok, then what ? he wants MRI with contrast to look at veins arteries in the colon and other organs, he wants possibly endo-ultrasound to look at pancreas and other stuff there..
Other things I have not mentioned .. urine is very cloudy a lot of the time and has ketones .. I have had no formed stools (soft) yet hard to pass and slow motility.. skin is yellowish but not eyes, labs OK..
Ok, I know this was a load. but I hope someone can pose some idea or next plan of attack.. Any more time and I will disappear.. Thanks