You have every right to be scared...I've been through horrible surgery experiences and one of them did ruin part of my life. I am puzzled that you are eating and don't know where it is going...what do you feel like? Do you feel bloated? If not, could you have a leak which would lead to sepsis (not to scare you - but a had a perforated bowel which led to sepsis). I don't get why no doctor will scope you - it seems you would go to the ER. Are you in the UK? Is that why you can't go to ER?
I totally get the feeling of this ruining your social life, job, etc. - as this happened to me at age 45. I got my pouch at age 23 and it was a factor in ending my first marriage. Luckily, I remarried at age 34 and still am married at age 53. My j pouch has definitely had an impact on my social life since the messed up surgery at age 45. I did not lose my job, but I quit. I nearly lost my mind...but somehow got it back. It is a "new normal." I am so sorry you are scared and I know the feeling and I hope you have family/friends or some kind of support. It seems to me you need an advocate to help you deal with the health care system....is there anyone - family/friends who will help you? Are you afraid to ask for help? You really need to ask for help - both psychological and physical help. If you are in UK - is this just how it is? That is so awful. If you have a pouch, you need access to care when things go wrong. Let me know how you are doing - I am so sorry you are going through this. Your feelings are valid and there are ways to cope with the fear - have you ever read "Full Catastrophe Living" - I forget the author - great book on living with chronic pain/fear, etc. and how to cope with meditation. That and the old classes "Feeling Good Workbook" - Ken Burns - cognitive/behavioral guy - my sister and I did this together via phone - she is hundreds of miles away but also has a pouch - after she went through a health crisis. We really changed the way we thought about all kinds of issues - we "knew" all this (I did for sure - I am a counselor) - but knowing it and doing it with someone else are two different things. It helps me move beyond my fear. It helps me know all things pass - all things are temporary, etc. - but I understand when you are in the thick of a health crisis nothing helps but good doctors who will help you!