Unexplained GI Bleeding for Almost a Decade

  My father-in-law has had lower GI bleeding for
  almost a decade.  The blood is always present in the stool,
  as are the symptoms of faintness, shortness of breath... etc.
  His gastro doctor has had him scoped every way possible.
  This last month, he has had over 9 blood transfusions,
  undergone an intestinal angiogram and exploratory surgery.
  And yet, they cannot find anything.
  He has a cherry angiomata on his nose and red bumps in the
  mouth - possible signs of Osler-Weber-Rendu syndrome (HHT).
  Yet, nobody in the family has nosebleeds or unexplained bleeding.
  Estrogen/progesterone has not helped much.  Iron therapy does not
  work.  We are interested, though, in finding out more about
  Danazol to stop the bleeding, as well as the possibility
  of telangiecstates being overlooked by the doctor.
  Has anybody experienced, or had a relative or friend who has
  experienced, unexplained lower GI bleeding with no findings?
  This is a desperate situation - does anybody know?  I appreciate
  any response.  Thank you.
Dear Juli,
One of the most common causes of occult lower gastrointestinal bleeding is bleeding from arteriovenous malformations or angiodysplasia. Distinguishing instrument trauma from minute vascular malformations can be difficult. They are commonly found in the right colon and terminal ileum, but can also be found in the stomach. If a bleeding lesion is noted at endoscopy, injection or coagulation can help stop the bleeding.  Unless active bleeding is present at the time of the study, an angiogram or nuclear red blood cell scan would be negative. It sounds like you've tried some medical and conservative measures such as iron and estrogens without success. In some cases surgery is warranted to remove areas of intestine from where bleeding occurs (usually from the right colon and terminal ileum). Some surgeons will perform a right hemicolectomy in cases of occult recurrent gastrointestinal hemorrhage assuming that the source of bleeding is from that area. Sometimes a small bowel enteroscopy or small bowel series can reveal an occult bleeding source. You stated that your father-in-law was scoped every which way, but did not mention whether the small bowel was looked at. If not he may benefit from an enteroscopy. Sometimes, more than one endoscopic procedure is necessary to reveal a bleeding source (especially during bleeding episodes).  
Osler-Weber Rendu (hereditary hemorrhagic telangiectasia) is a rare genetic disorder. Cherry-red vascular anomalies are seen on the lips and tongue. They may also be seen to a lesser extent on the hands and other skin surfaces. Lesions are rarely found before middle age and epistaxis (nosebleeds) occurs due to telangiectasias present in the nasopharynx. On endoscopy, patients with hereditary hemorrhagic telangiectasia have lesions in the stomach and duodenum which appear similar to those in patients with angiodysplasia but are found in greater numbers. There are scattered reports of treatment with the anti-fibrinolytic agent aminocaproic acid. I hope you find this information helpful.
This response is being provided for general informational purposes only and should not be considered medical advice or consultation. Always check with your personal physician when you have a question pertaining to your health.
If you would like to be seen at our institution please call 1-800-653-6568 our Referring Physicians' Office and make an appointment to see Dr. Muszkat, one of our experts in Gastroenterology.
HFHSM.D.-ym
*Keywords: occult gastrointestinal hemorrhage, hereditary hemorrhagic telangiectasia