I'm not really sure where to post my questions since the loss of my colon does not fit into any of the catagories here. I've learned that many people with ulcerative colitis often lose their colons too, so I hope I am asking the right group of people the questions that I'm not finding answers to.
One year ago (next week) I took ONE dose of chemo therapy for Breast Cancer. Within a week it has stopped my heart and kidneys and melted my colon (Neutropenic Colitis). My doctors were not able to give me a 'proper ileostomy', so for a long time I only had an opening at skin level with a bag attached. I now have an 'ileostomy tube' that comes out of my abdomen and drains into a catheter bag. It is very uncomfortable and I can pretty much only eat liquid other wise it plugs the tube, when that happens the fecal matter comes out around the tube and scorches my skin. I also continue to use TPN daily, which I am very aware is not good for me...
Here are the questions that I am struggling with. My doctor in Seattle (whom is 150 miles away from me) continues to make me feel comfortable about having the reversal surgery done now. However, my surgeon here where I live (he didn't do my colon surgery, but he removed the cancer from my breast and has done several other procedures on me and continues to monitor my TPN since I live so far way from my surgeon in Seattle). He continues to warn me not to have this surgery too soon. He says that if I do it too soon, it could go terribly wrong...I want to hear from others who have had their colons removed, how long they waited before they had a reversal? It will have been 6 months in a couple of weeks since my last surgery...I just want to know what other people have gone through...how long they waited, how it went, and yes, the horror stories too. I want to know it all! Any help would be much appreciated.