Losing to much weight

I have some questions at the end. PLease answer if you can.

I am 5'3", female, and weighed 250 lbs. I got real sick 10 months before my DS surgery in Jan 2013. I lost down to 209 by the time I could have the surgery. My common channel is 90 cm. Nine months later, my doctor said I was losing too much weight. I weighed 135 lbs. 4 months later I weighed 125 lbs. My doctor told me to eat all the time, get 100 grams of protein, and put me on Pancreaze. I immediately started having severe stomach aches, excessive gas and bloating, and very frequent, urgent bowel movements. But the BM was normal for the most part, just very frequent. I was/am anemic and have malabsorption issues. I am very sick, but my labs are pretty good.

I found out the number 1 side effect of Pancreaze was stomach aches. I stopped that, and it helped quite a bit with the stomach aches only. I got down to 99 lbs. I had to struggle to eat. I finally, about a year later, got up to 115 lbs for almost a year and a half. My psychiatrist lowered one of my medicines, and I started losing weight again. I now weigh 104. My anxiety went way up, and I very easily get stomach aches from that. It is a different kind of stomach ache. I can tell the two apart, but I often have both at the same time. My psychiatrist refuses to raise my medicine back up. Three and a half years later, I am still have frequent, severe stomach aches, excessive gas and bloating, and very frequent, urgent bowel movements. I hate to leave the house, as I need a bathroom so often. Sometimes I don't make it to the bathroom.

My DS surgeon no longer takes my insurance. I live in West KY, and he is in San Francisco. There are no DS surgeons in my area. Nor do any of the other types of doctors in this area know the first thing about DS surgery.

I went to a DS doctor in Nashville, TN for over a year and a half. But he was not able to help me. He has never done the lengthening of the common channel surgery. I do not want to be his first, (not that he offered). It is just as big and complicated as the original DS surgery. I would rather not have to do it at all. My stomach hurts everytime I eat. Often the protein drinks hurt my stomach. I am in pain most of the time and very scared.

I had a roux-en-y weight loss surgery 9 years before I got the DS. It didn't work well. But I have a lot of issues with food that I didn't have with the roux-en-y surgery.

Questions:

(1) I was wondering what percentage of DS patients have the losing too much weight and malabsorption issue?

(2) Are a lot of you having these issues with food?

Food doesn't have any taste

Food taste funny

Get real tired of a food after eating it only a few times

Forget to eat

Not hungry hardly ever

Having to eat is a chore

Don't enjoy food at all anymore?

Protein shakes (whey isolate) hurt your stomach

(3) I have been told by a person in the San Francisco, CA support group that only about 5% of the patients are able to keep their weight down. This means they have gained a bunch of weight back or just too much weight back. Is this for real?

(4) Does anyone know of a very good DS surgeon near or some what near my area. Zip 42001-Paducah KYI am too sick to go to Chicago, IL (8 hours) or the Mayo Clinic (10 hours).

I really need help.