Have had ileostomy for 3 years due to irreparable gut injury (no underlying disease). Otherwise very healthy.
Have this phenomenon that I wanted to see if anyone else has. Two things going on.
1. Real lack of hunger. My electrolytes measure fine, in general I stay hydrated enough to pee out two quarts of urine per day (I was told to do this by multiple docs). Eat light breakfast then it takes me about 8 hours to get hungry again. So far so good and what I do eat passes. Weight is healthy and stable.
2. If I have a lot of sugar (or especially fake sugar) in some food, I get severe ileostomy diarrhea. One GI doc said I likely don't absorb sugar. If I have a decaf latte with sugar and three scoops of ice cream SOMETIMES I will fall into a situation where I just fill bag after bag of clear yellow digestive juices and have to take 3 immodium before output slows and thickens. SO, I obviously try not to do too much sugar and avoid all fake sugars.
My stoma nurse says she has not heard of this happening unless someone has the Noro Virus. This has happened multiple times to me without having the Noro Virus and while the rest of me feels fine.
Does any other ileostomate have these 2 things or either of these 2 things going on with them?