I unfortunately am in the same boat. I had my pouch done in 2007 and really was never ok... Pouchitis started immediately and for years. Then was diagnosed with Crohn's and had to do dilations at least twice a year as I was getting multiple strictures. Ran the gamut with Remicade, Stelara, Humera, Mercaptopurine, etc....
Got kidney cancer last year and during surgery they punctured my small intestine which shut down my digestive system for 13 days.
Now I have a 10-inch closure going into my pouch and the doctors at the clinic cannot do any more dilations or guided wire procedure to open up. Only option is an ileostomy, but only i think 60% success rate after a failed J-Pouch. I do not want any more surgeries as I seem to get worse every time.
I have always been tired as my daily bowel movements are min 20 upwards to 30. I do not sleep as you know we are always up going to restroom. But since my cancer surgery (which is gone:}) I have had and exhaustion that goes beyond tired. It is more of a malaise/fatigue. I feel lightheaded at times and am almost always nauseous. I own a business and am now in the process of giving it to my son as coming to work is almost impossible. My numbers are not terrible in regard to nutrition. They are worried my kidney are starting to suffer from the constant dehydration and rehydration.
I apologize for the long explanation, just wanted everyone to know we are not alone, and tomorrow is another day. It is amazing what we get used to....
Hope you and your families all stay well