Posted 2/3/2015 11:51 PM (GMT 0)
I had a similar situation. Had my colon removed, had problems with my pelvic floor and the IRA, and eventually had an ileostomy put in place. After some hardships things finally seemed to work out and I was stable with my ileostomy, though at too low of a weight.
I never put in the effort to gain to a healthy weight, and over time with random blockages, some illness, etc, my weight began to slowly creep lower over time. Eventually, I got to a point where my small intestines began to "intermittently tangle". Without a colon you have more room for things to wander around your abdomen and pelvis, and given your low body weight this is compounded by the fact that you have little to no mesenteric fat to support and pad your internal organs (happened to me).
The only thing that has reversed this situation is to put on some serious weight and get back to a healthy point. Unfortunately, you seem to be at "the point of no return (without help)" that I was at. See, to get your insides padded properly again, and to make sure your gut is working properly (a stomach that empties normal, a small intestine that has adequate peristalsis, etc) you need to re nourish your body and get back to a healthy weight, but in order to absorb said food your gut needs to be working (an unfortunate catch-22). This is where total perenteral nutrition comes in. They basically hooked up an IV to my heart and were able to pump a massive amount of calories into my body and get my weight up and maintain my nutrition without overly taxing the GI system. I am now back to a healthy weight, everything is working 100% better, and I am no longer on TPN.