I'm trying to help a friend. She has spent the last 5 months, plus acquired many medical bills in trying to get help. (she has no health insurance) June 1, 2005 had
LaparoscopicGallbladder removal
Gynecologic laparoscopy surgery which was then converted to an open
cholecystectomyGallbladder removal with cholangiogram
commonCommon cold bile duct exploration & 14 French T-Tube placement. On 6/14, clamped off the T-Tube. 6/23 no bile drainage from JP, so was removed. 7/15 Started
Actigall 300 mg to try to help
maintain bile flow (was having "fullness" in upper quadrant) The
Actigall didn't work. 9/7 Had a T-tube cholangiorgram with dilation of the Ampulla. Had NO SWELLING OR FLUID BUILD UP for 42 hours after the tube was removed. Ever since this date (9/9) she has been trying to find out what is causing her condition. Her bowel movements are fine. She looks to be about 7 months pregnant retaining fluid in her body EXCEPT for her chest area. From her belly button down it is "soft", but from there up it is "hard". She measures her stomach each day (top & bottom) and her measurements are about 1 to 2 inches lower in the morning than evening. She gets some relief in the morning, but as the day goes on she gets worse. She describes her "misery" as feeling like her skin is "stretched to the max" and sometimes she has trouble breathing. Her stomach is very sensitive (above belly button)to where she can't have anything restricting it. It doesn't seem to matter what she does or does not eat...she still gets this way.
Here are the tests done so far and the medications she has tried for various things:
TESTS: CT scan of abdomen & pelvis, Colonoscopy, MRI, MRI with contrast, Upper GI endoscopy with biopsies, Chest X-Rays Front AL/LAT, Gastric Emptying test, Ultra sound on pelvis, Lots of Blood work (also for cancer of ovaries)(liver enzyme:AST(SGOT 44, Gluccse 112) All tests show nothing. She mentioned to one doctor about the test for Spinchter of Oddity, but he said she would be in alot of pain if she had this, so he did not do one.
MEDICATIONS TRIED: Ursodiol 300 mg, Sucralfate 1gm, Cholestyr, Aciphex 20 mg, Pamine Forte Tab 5mg, Amitriptyline 10 mg.
She has told all of the doctors that she has seen...when the T-Tube was in, she was normal! But now she is miserable! They said that the MRI with contrast would show if she had any blockage, and it showed none. She is getting more and more depressed with not getting any answers and with all of the medical bills adding up. Of course, they say, just send $20 month, well when you have to send that to 20 different places and your family income is less than $20,000 per year, you really feel like you are doomed! She said she would rather live with that drainage tube the rest of her life than feeling miserable! I sure hope you have some idea of what her problem might be, before something serious happens to her. It seems like when someone doesn't have insurance, it takes alot longer to get appointments!!