I am sorry to hear you are having problems, but I was relieved to see someone else who seems to be stuck in a similar position as me. I have a j-pouch and I have had problems with obstructions caused by adhesions. I had lap surgery to remove adhesions in 2014 and unfortunately they burnt a microscopic hole in my small bowel and didn't notice, so a week later my sb ruptured at home which then resulted in an emergency laparotomy......2 months later the obstructions started again. Since then things have got worse, I have only been able to digest liquids and my quality of life is really bad. If I stand or sit up my bowel obstructs, so I spend most of my time lying down. It is very difficult to pass wind which builds up and the only way to get the gas out is lying on my stomach. I keep living like this, but I think the time is coming when I am going to have to have surgery again. I am getting thinner and thinner and more and more tired and TPN keeps being mentioned, which I absolutely do not want. It is chicken and egg.....more sugery, more adhesions.
Just a note of caution on Gastrogafin. If you don't have a colon, you should not try it at home without medical supervision. It causes complete emptying of the bowel and if you have hydration issues can be extremely dangerous. I am always given IV fluids before, during and after gastrogafin.
All the best and I totally get it!
Caroline