Guest guest Posted June 16, 2001 Report Share Posted June 16, 2001 , I do not know if I can help you, but will try. I have had symptoms like this in past, but I have been diagnosed with vascular EDS, and Crohn's disease (most likely just the vascular EDS). I do have rectal bleeding all the time, and no matter what they do, it does not clear up completely, although this is from inflammation. I have chronic nonspecific inflammation everywhere in the GI tract, anywhere they take a biopsy. What I don't understand is why all lab work is normal if she is not keeping fluids down. Do you mean she cannot keep an IV in, due to vessel fragility? Is she in the hospital, or being treated at home? It is possible she is having problems with adhesions from the surgery. It is possible she has inflammation in an area of the small intestines that cannot be reached or biopsied. In EDS it has been found that an individual can have microscopic diverticuli, undetected by colonoscopy, that can cause problems. Has she been told she has ileitis? This is inflammation in the ileum of the small intestine (the last portion of the small intestine). Have they checked for Celiac's Disease or lactose intolerance? What medications have they tried to treat her problems? I am on medication and under pretty good control right now, and have gained 25 pounds in the past year and a half. Have you tried going on the Crohns and Colitis Foundation web site? They have an online forum, where you can ask Dr. May any question you like. he usually responds within 24 hrs. He told me when I went on and asked him, that I should go see a geneticist, that it did not sound like I have Crohn's. He was right on the money. Dr. May is a GI doc, who has Crohn's himself, as well as his wife, and only researches Inflammatory Bowel Disease. Try him and see if he can point you in the right direction. I can also send you an attachment of some GI information I have. Let me know if you want it. I do not want to send it directly to you without you knowing me, or you will not want to open it. Take Care. Ginley, RN, CNC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Dear , Did you get my email with the attachment? I hope you could get through it OK. Let me know if you didn't get it for some reason. That was the first attachment I ever sent, believe it or not. How is your friend? Let her know I am thinking of her, and praying she feels better soon. Love, Sue Ginley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 , Also meant to tell you, abnormal vs. normal labs does not always mean anything. You can be well and have an abnormal lab value, and vice versa, have normal labs and be pretty sick. Has your friend been biopsied to rule out the vascular type of EDS? I hope so for her sake. Love, Sue Ginley Quote Link to comment Share on other sites More sharing options...
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