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internal bleeding, unknown source
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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?
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Avatar_f_tn
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.
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Avatar_n_tn
How long have you been on the Nexium? You may want to make sure that it's not causing your problem.
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Avatar_n_tn
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!
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Avatar_n_tn
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.
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Avatar_m_tn
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 ....  
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Avatar_f_tn
Going through the same thing... No Doctors care...
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Avatar_n_tn
HI ,I HAD BLACK STOOLS THE WHOLE YEAR OF 2011,ALONG WITH DIZZINESS,SHORT OF BREATH,AND FAST HEART RATE,I DECIDED TO FIRST GO TO MY PRIMARY CARE PHYSICAIN,SHE DID A CBC COUNT,FERRITAIN LEVEL COUNT,AND ALL THE NORMAL COMMON BLOOD TEST,MY DOC FOUND THAT I WAS ANEMIC,BUT ALL SHE TOLD ME TO DO WAS TAKE IRON FOLIC ACID AND B12 TO CORRECT THIS,AND SO I DID,BUT IT WASNT WORKING I STILL HAD DIZZISPELLS,SHORTNESS OF BREATH,AND ALMOST FAINTED AT THE WHEEL OF MY CAR,SO I WENT TO HOSPITAL AGAIN,THEY TOLD ME MY BLOOD COUNT AINT THAT LOW ONLY 11.8 AND I ALMOST SUFFERED 2 HEARTATTACKS,AND DID STOP BREATHING ONCE BUT LUCKLY I GOT MY BREATH BACK,FREEZIN
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Avatar_n_tn
REEZEING COLD FEET TO WHERE THEIR WAS NO BLOOD FLOW IN MY FEET DUE TO THIS ANEMIA,BECAUSE I DID HAVE BLACK STOOLS,ALONG WITH DIZZINESS,MY FEET WERE FREEZEING COLD DUE TO NOT ENOUGH BLOOD IN MY BODY SO IT HAD TO TAKE THE BLOOD OUT OF MY FEET TO PUT IN MY LARGER VESSELS,IM BLEEDING INTERNALLY TOO,AND MY STOOL BLOOD OCCULT TEST CAME BACK NEGATIVE,I HAD AN ENDOSCOPY IT CAME BACK NEGATIVE,AND A COLONOSCOPY IT ALSO CAME BACK NEGATIVE,THEY CANT FIND THE SOURCE OF MY BLEEDING,BUT IM SURE ITS IN THE UPPER GI TRACT SUCH AS THE SMALL BOWEL,IN WHICH THEY HAVE TO DO A DOUBLE BALLOON ENTEROSCOPY,OR A CAP
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Avatar_n_tn
OR A CAPSULE SWALLOWING ENDOSCOPY,IN WHICH THEY FLAT OUT REFUSE TO DO ON ME,IVE ALMOST DIED 3 TIMES FROM THIS AND ALL THESE DAMN DOCTORS ARE LIEING ABOUT THE ****,MY STOOL WAS AS BLACK AS TAR FOR 1 YEAR,I HAD MUSTIPLE TEST DONE THEY SAID THEIR IS NO BLOOD ******* LIARS,AND IM ANEMIC WHICH IS TRUE NEVER BEEN ANEMIC IN MY LIFE,AND THIS ANEMIA IS KILLING ME,IM CONFINED TO A BED,I SLEEP ALL THE TIME,MY HEART HAS TO WORK HARDER TO DO SIMPLE TASKS IT IS TAKEING A TOLE ON MY BODY AND I THINK IM FIXEN TO DIE FROM THIS,I WISH THEY WOULD ATLEAST GIVE ME A BLOOD TRANSFUSION BUT THEY REFUSE,IDE LIKE TO HEAR MORE ABOUT YOUR SYMPTOMS,CAN YOU PLEASE E-MAIL ME,WITH ALL YOUR SYMPTOMS BECAUSE I HAVE THE SAME THANG E-MAIL ME PLEASE,
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7297044_tn?1389936771
My father too is in the hospital and no answers found yet. He swallowed the camera and nothing. I just lost my mother this past year and am afraid I may lose my father too although under different situations. I am surprised that this condition whatever it might be is more common than I expected.
*  71 y.o male
*  Has had a triple by_pass
* Cancer in remission for 20+ years
*  On multiple medications

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7297044_tn?1389936771
Where is the real doctor House?
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Avatar_m_tn
I am no expert but the type of anemia most or all of you have is not anemia as we know it, this anemia is an autoimmune disease that causes a host of ailments that are masked as something else.  This is due to the body not being able to absorb b12 in foods and otherwise.  Also iodine deficient.  Being that our bodies cannot absorb the vital nutrients, we need double, sometimes triple the amount. The name of this disease is Pernicious Anemia, please demand that your doctor test you for this, once diagnosed a great deal of the meds your on may be omitted.  we all must be advocates for our health, doctors don't know everything obviously.  All the best.
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