Posted 3/7/2014 11:32 PM (GMT -6)
I was diagnosed with such a rare disease that no GI Doctor will treat me or even see me. After months and months of abdominal pain my BM stopped almost 100% I have gained 15 pounds in less then a week. So I go to the Doctor today and ask for an Xray just to ensure there is no blockage, what we find is yes a blockage but we also find 9 Sitz Markers from my study Jan. 13, Today is Mar14. The final results of my original study the Doctors claimed there was only 3, this is an issue because I actually still have 9 over a year later. This foolish Doctor was going to perform a Colostomy on me. When I went for a second opinion I was told a year prior I had been diagnosed with Primary Visceral Myopathy from a previous State and was never told. After reviewing my records they had seen that when that diagnosis was given only 75% of my colon was affected, a year later I was being told it had spread into my small bowel, stomach and other organs so the Doctors concluded that because of a small set of cases like mine, the organs actually attacked themselves and the body because of having any surgery. I was told that I could have everything removed 100% and go on an IV feeding system or I could wait until I am forced, I chose to wait.
I come here because I am coming upon a serious decisions of deciding whether I go full fledge or I perish on my own. HAS anyone ever had Sitz Markers stay in them? What did your Doctors do?
Also does anyone have experience with the complete removal of the digestive system? The IV feeding system? I am 35, I have three children who need me and since no Doctor in the US will treat my disease I must rely on instinct and other peoples experiences. Please answer soon, some of the blockages are the size of baseballs, they are all where the markers are or just above the markers.