Hi Colleen, yes we are working with a dietician (weekly) and a doctor specializing in Short Bowel Syndrome (all through the Mayo) as his ileostomy is very high up in the small intestine and he is also on TPN nightly. It is difficult to balance his output (which continues to be 2.5 - 3 liters a day) and his overall hunger. I am currently monitoring what he eats, when, and output times. For example, he ate a plate of French fries and his output was high and quick - so no more fried foods ( yeah it was not on his diet to begin with but he wanted to try). He is a picky eater. Most of the foods that are not recommended post-Ileostomy he did not like already - so it is not him missing certain foods.
We read that someone who plays golf knows to limit food intake before going to the golf course (one of our goals is to get back to golf soon); that was extremely helpful. My husband now limits meals or snacks around outings before leaving the house.
With only 5 weeks post-op we are still on the learning curve and I appreciate all the tips we are getting as we navigate our new normal.