internal bleeding, unknown source

I've been told I have internal bleeding, however the source is unknown. I've had 7 blood transfusions since May '05. I've had UGI, BE, colonoscopy, ct of abdomen, endoscopy's, and numerous other tests. Why is it so hard to find the source? I had my gallbladder removed on 4/25/08. My last transfusion was  in January '08. On Thursday 4/29/09, my Hgb was 8.5, which I know has dropped since then, because I vomited black stuff yesterday. Hemoccult tests have been positive. I've been on Nexium for GERD, and have been told the LES is gone.  If I don't take the Nexium, I'm in a lot of pain with the acid reflux/heartburn. I am so exhausted and wore out from the low Hgb, I am losing my sanity. All they do for me is transfuse me and to me that's like putting a band-aid on it. I want and desperately need to know the answers and why this is happening to me. I have no insurance, don't make much money, but yet don't qualify for any help.  I feel so bad, weak and feel like I'm being pushed to the side because I do not have insurance. All I want is someone to listen to me and to talk to me to try and help me. My quality of life has went way down since this all started.  I know I can go to the E.R., but all they do is transfuse me if the level is low enough, other than that they send me home and say "contact your doctor".  Well, the doctors won't see me till the balance is paid, and it's racking up, I cannot afford it. It's so frustrating. I would do almost anything to get a good doctor to help solve this mystery..I do medical billing and could work off the bills. I just want help so bad..I already have depression and this is pushing me to the edge, and I can't think straight when my Hgb drops like this. Anyone out there have any suggestions?

[CalGal]

Dena, if you've been listening to them tell you they can't find the source of the bleeding, make sure you get a copy of all the doc's reports and the actual test results and read them. There are things docs don't relay to patients because they don't think they're significant, so something could be overlooked. You need to do your own 'read' of those reports.

Of the tests you've had, the biggest area that can't be visualized is in the lower (approx.) 7/8ths of the small intestine. About the only way that section can be visualized is by either a double balloon endoscopy or with the capsule camera.

If you're throwing up black vomit, it sounds like it's coming from the upper part of the small intestine, perhaps past where they could reach with and upper endoscopy scope, or perhaps within the stomach.

[MishaTx]

How long have you been on the Nexium? You may want to make sure that it's not causing your problem.

[Dena36]

I've been on Nexium for about 7 years. They recently switched me to Protonix, as I don't qualify to get Nexium for free anymore. Here it is 2012, and was in the hospital again. Had black stools. Level dropped to 7.8, had 2 units of blood transfused and an iron infusion. GI doc did an endoscopy which showed an arterial vein malformation and hiatal hernia. Small bowel follow through was normal. He wants to do another colonoscopy and a capsule endocsopy. I guess I'll go through all this again, but not confident that they'll ever find my source of bleeding. One good thing is now I have medical insurance, so I'm hoping I'll get better care and answers I desperately need. Thanks!

[Dena36]

Thanks so much for your input. I am in the medical field and do read all my test results and reports, but I'm just as baffled as to why I'm bleeding and where. Was just in the hospital again for four days after having black stools and HGB dropped to 7.8.

[jax255]

Please update us on your condition and if they ever found the source.  My dad is going thru the same thing and it is exhausting...     Desperate for answers ....  

[Sassc922]

Going through the same thing... No Doctors care...