Discussions By Condition: Medical Stories

Unidentified G.I. Bleed

Posted In: Medical Stories 2 Replies
  • Posted By: Anonymous
  • January 9, 2009
  • 02:52 AM

I have been rectally bleeding for 4 years now. I have been to more than a dozen doctors overall, 8 of the G.I. doctors. I have had at least 13 bowel surgeries, but the last one was in 1999. No problems showed up until 2005, when I began to bleed heavily (rectally). I didn't have time to deal with the issue, as I had a newborn grandson to babysit and a mother dying of cancer. When my hemoglobin got to a critical low of 6.6, I had to have the first of 9 blood transfusions. The doctors have run every test known to man of my G.I. tract, and can find absolutely NOTHING. I bleed pure, blackish/dark red blood, usually with clots in it. Often, the clots are as large as the palm of my hand. I have had nuclear scans, "oscopies" until I am sick of them (both endo and colon), and no one can give me a diagnosis. My most recent G.I. doctor told me that (very cavalierly, I might add), approx. 15% to 20% of G.I. bleeds are NEVER found, and I would just have to keep receiving transfusions until they became too dangerous (about there now). I spent 45 days in the hospital last year alone and had 9 transfusions. I do have several diseases on top of the surgeries, Lupus, R. Arthritis, etc. If you know of anyone else who has had a similar issue, or could recommend anything (I am trying to think outside the box), I would greatly appreciate it! By the way, this is an EXTREMELY painful problem, and I am on chronic pain meds, which barely help at all. Thank you to anyone who can help me!!

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  • I have been rectally bleeding for 4 years now. I have been to more than a dozen doctors overall, 8 of the G.I. doctors. I have had at least 13 bowel surgeries, but the last one was in 1999. No problems showed up until 2005, when I began to bleed heavily (rectally). I didn't have time to deal with the issue, as I had a newborn grandson to babysit and a mother dying of cancer. When my hemoglobin got to a critical low of 6.6, I had to have the first of 9 blood transfusions. The doctors have run every test known to man of my G.I. tract, and can find absolutely NOTHING. I bleed pure, blackish/dark red blood, usually with clots in it. Often, the clots are as large as the palm of my hand. I have had nuclear scans, "oscopies" until I am sick of them (both endo and colon), and no one can give me a diagnosis. My most recent G.I. doctor told me that (very cavalierly, I might add), approx. 15% to 20% of G.I. bleeds are NEVER found, and I would just have to keep receiving transfusions until they became too dangerous (about there now). I spent 45 days in the hospital last year alone and had 9 transfusions. I do have several diseases on top of the surgeries, Lupus, R. Arthritis, etc. If you know of anyone else who has had a similar issue, or could recommend anything (I am trying to think outside the box), I would greatly appreciate it! By the way, this is an EXTREMELY painful problem, and I am on chronic pain meds, which barely help at all. Thank you to anyone who can help me!! Hi JV1, I have no idea at all what could be causing the bleeds. Methylb12 (the right brands) plus other necessary vitamins and minerals which I am sure should include iron because of the bleeds could help to possibly reduce pain and inflammation and perhaps even help whatever it is heal and at least help prevent you from becoming anemic.http://forums.wrongdiagnosis.com/showthread.php?p=137682#post137682. We can at least discuss nutrition with you and perhaps you could check out your symptoms against the list and see if there is some overlap with whjat you have. Extra nutrition won't hurt and might even help in some ways. Good luck
    Freddd 3576 Replies
    • January 9, 2009
    • 10:13 PM
    • 0
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  • Hi hun, I do feel for you and wish I could give you a quick fix... I do however know alot about chrons disease and the problems that go with it. I do have several diseases on top of the surgeries, Lupus, R. Arthritis, etc. Often arthritis will appear before chrons even tho it is to be thought a result of crohns, ulcerative colitis and even celiac disease. It is found in as many as 30% of people with arthritis symtpoms. As in any person with IBD, the symptoms vary greatly. The bleeding is definitly a sign of something wrong in the small intestine tho, since the blood is dark and clotted. That would most likely rule out Ulcerative colitis as well, since the large intestine is most likely scoped. The arthritis symptoms will often "flare" along with the IBD, but they can also show up on their own. Some people do not have any IBD symptoms at all. Crohn's patients may also develop an inflammatory spinal and sacroiliac arthritis that is indistinguishable from ankylosing spondylitis. You also mention that you have several other diseases. As you might already know, all of these so called autoimmune diseased are linked. If you have one it is likely that you have two. Even tho they are not sure, they are almost certain that IBD is autoimmune as well. I know how frustrated you must be, and I can only tell you that there are many people (including myself) that do not have a diagnose, and that live with symptoms daily. There is a great support site at www.healingwell.com. If I were you I would join and start posting questions about the RA and Crohns connection. You should also try educating yourself by reading on the net. There is load of info out there.
    Anonymous 42789 Replies
    • January 10, 2009
    • 08:35 PM
    • 0
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