· Constant feeling of RUQ distension and discomfort (running parallel to the right rib cage from center of epigastrium continuing to right hypochondrium)– this area is continuously slightly swollen, but will exponentially increase in size as I get closer to having a pain attack;
· There are three highly specific regions along this line of distension that are painful on touch and that are palpably “”different”” feeling (1st is upper center epigastrium right below the xyphoid process, 2nd is halfway between the 1st and 3rd areas where one of the scars from the laparascopic cholecystectomy at the edge of the rib cage; and the 3rd is clear on my right side where my elbow area would be if my arm were hanging straight down at the rib cage– no scar from laparascopic cholecystectomy)
· With no specific timing, the following will occur out-of-the-blue, often subsequent to eating or drinking something complex (i.e., oatmeal, grains of any type, red meat, grain alcohol) or much less often, it will happen with having eaten nothing and drinking nothing:
1. RUQ area (as described above– pictures attached) swells up to an external size equivalent to a very large sweet potato or 1/3 the size of an inflated football;
2. A “”pain attack”” will spontaneously occur with no warning, equivalent to (if not worse) to a kidney stone (I’ve had plenty so I know), lasting anywhere between 5 minutes to one hour;
3. If I get to the hospital before the attack is over, my liver panel is completely out-of-whack, as in my lipase and amylase are sky high– however, I have only gotten to the hospital in time to show this once in eight years… even when five minutes away, by ambulance, by the time they get around to drawing blood, the pain attack was at its bitter end (within a week or so my liver panel returns to normal);
4. During the pain attack, I will spontaneously become nauseated and dry heave for about 5 minutes (SOMETIMES, I can speed up the end of the pain attack by drinking a bunch of water, but this only works one out of two times)– the pain attack is so severe, I break out in an all over body sweat, I am curled up on the floor rocking on my left side deliriously screaming in pain… a couple of times I have passed out when the pain was so severe;
5. Once the pain attack has subsided, I become very tired for days up to two weeks;
6. Also once the pain attack is over, I have light tan colored waterish diarrhea for 2-3 days (100-200 times per day);
7. After the diarrhea phase (and not before), the RUQ swollen distension area reduces 75 percent, but NEVER goes flat or symmetrical to my left side;
8. Then for another week (give or take) I have light tan colored somewhat loose stools.
9. At this point, I enjoy a RUQ area that is only 25% of the pain attack size for a very brief period of time, before the swelling commences again, and this entire cycle starts again.
· My gallbladder was removed 12/30/2004 by laparscopic cholecystectomy; this cycle described above first happened on 12/31/2004 (one day later, which I went to the ER for and the surgeon did nothing and ordered no tests, I was sent home the same day, hours after the pain subsided).
· I have spent tens of thousands of dollars having every test known to doctors done (i.e., ultrasounds, endoscopic ultrasounds, CT scans with and without contrast, MRIs, colonoscopy, upper GIs, lower GIs, blood tests, medication after medication after medication)– doctors have suspected and/or ruled out: Sphincter of Oddi, colon cancer, problems from my 1994 Nissen’s fundoplication, post cholecystectomy disease, pancreatic issues, liver issues, Crohns, IBS, etc).
· Once, four years ago, a general surgeon (after looking at an old CT scan said he saw a RUQ hernia, and scheduled surgery… and right before surgery said he didn’t remember saying or seeing that and on looking then at surgery time didn’t see what he had seen before) went ahead and did the surgery giving me a 5 inches scar… about 2-3 inches BELOW the problem area)– which after surgery he tells me there was a mild issue with the mesothelium and peritoneum layers that he fixed with a patch.
Needless to say, I AM VERY DISENCHANTED with spending thousands more repeating expensive tests that reveal NOTHING. Additionally, as a side note, if I eat vegetarian and do not drink alcohol my pain attacks are lessened in frequency as is my 9-year bout with diarrhea, but the swelling of the RUQ never lessens and never stops completelt and never returns to normal.”