severe nerve pain of diaphragm and back that ascends to neck from complications post cholecystectomy

Hi,

After gallbladder removal I had intolerable abdominal pain and I would be in agony in less than 2 hours after taking my meds (prescribed dilaudid 4 mg every 4 hrs and valium 10 mg every 6 hrs). I would have to take the dilaudid every 3 hours and I left the valium at 6 hours. My stomach was distended, the pain was past intolerable, I had to lay sitting up at nearly 90 degrees and if I moved left or right it hurt so badly that I had to have my husband help reposition me. Also, I couldn't use the bathroom to void or have a BM.  I told the surgery nurse all of this, fever 100.8, chills, nausea etc. and that my kidneys were killing me. I'm also an RN, but have done my psychiatric nursing than medical nursing,with a high pain tolerance and self treated for two gall stone attacks. She told me not to take the meds that often that it would hurt the kidneys so I didn't take any pain meds for 10.5 hours, it didn't make much difference. I started taking the meds again. The nurse should have recognized the symptoms but I never heard from her again. Immediately after recovery I told the doctor that I couldn't breathe in and that my diaphragm was very numb, she refused to give me an incentive spirometer as it isn't required for this procedure. A couple days later I stood in the snow storm thinking I was dying while I waited for the ambulance because my abdomen was so distended and I had such a bad muscle spasm that I could hardly breathe. I broke out in a profuse drenching sweat and they couldn't get the iv's started despite drinking 2,000 ml a day and having such a dry mouth that my tongue was sticking to the roof of my mouth. The doctor laughed at that and still didn't catch anything. They did tests that showed fluid in the abdomen, pleural effusion, bilateral bibasilar atelectasis, pain meds were barely touching the pain. My right shoulder hurt so badly I couldn't believe it. They sent me home 8 hours later with prescriptions, 4 hours after taking my BP of 169/128 pulse 109 and asked if my pain was still a 9 (not a 10 bc I could still breathe) and I said, "Hell yes, how would be better when I haven't gotten any pain meds?" The nurse said the dr.'s didn't realize how much pain meds they gave me and couldn't give me anything else. The next morning I hurt so badly I called the dr. on call which was my surgeon and she had me go for tests. It showed a bile leak. a few days later they did the stent for a hole in the common bile duct and this required a second surgeon bc the first one couldn't get it fixed. It took ten times longer than they said it should have. A few days later I'm really sick and they do more tests that show peritonitis, a biloma in the gall bladder fossa, pneumonia, gastric ileus, an iatrogenic lesion on the right kidney, and pleural effusion on the right lung. They put a JP drain in and did percutaneous drainage , I stayed my first night in the hospital. My urine was brown, kidneys killed, and my back started hurting badly. I didn't understand why my back hurt so badly and we thought the ERCP and stent taking so long was the cause. It didn't hurt till this procedure. My back is numb all the time initially it was a band about 6 inches above and below my bra line. My diaphragm is really numb and the muscle get so tight it felt they break a rib. Bigger muscle relaxers just so I can breathe, but not deep and God help me if I yawn, cough, move wrong or anything it hurts so badly. Now 2 months late, if I lift my arms (to eat, type, do dishes etc. ) above my waist my back gets severe pain, pins and needles, and dead numbness that ascends to the base of my head - while my diaphragm goes dead numb and painful to my collar bones. the surgeon has blown it all off and acts like she doesn't know why I hurt. I began belching about 7 times a minute for 15.5 hours and it hurts so badly I was about to go to the ER when I called my pharmacist and left a message with another dr. and they said start zantac twice a day and take 1-2 gas relief pills with each meal (simethicone). the next morning it was better but only if I adamantly take the simethicone. Dr. started nexium and said to stop the zantac after 3-4 days but I started belching again so I stayed on them and now I had to increase the simethicone yesterday. My abdomen gets so distended and painful with all of this air and no one can say why. My family dr. thinks the diaphragm paralysis has something to do with it. I have spent easily 200 hours searching for information about all of this and it is like pulling teeth. I was told by another surgeon who will take my stent out next week that I will hurt like this for 4-6 months and need to take the narcotics and they would send me to a pain clinic. I have kids and was wanting to go backl to work and can't like this. I quit taking the narcotics except for emergencies because it was like I had dementia, I couldn't think clearly enough to get a small grocery list. I hate all of this but I am glad that I survived it. I feel stupid bc I was concerned about getting irritable bowel  and never really thought about having all of these complications. If I had been better prepared, I would have known the day after the surgery what was going on. I had blood in my urine so dr. sent me to urologist and he was in this same group of doctors, but in another city. He said there is nothing wrong with my kidneys, my nerves in my diaphragm and back ,nothing wrong anywhere just the irritation from the peritonitis and it will go away if I give it some time. That felt like this biggest waste of time and a huge blow off of my circumstances. The doctor that came in and fixed the stent was the one I went to 1.5 years before and 6 weeks after an assume gall bladder attack that I treated at home by going on a liquid diet for 3 days and then mostly liquids for over 2 weeks. He said there was no way I had a gall bladder attack, I couldn't have handled the pain without going to the ER. He didn't know what was wrong but there was no point in doing any tests bc it couldn't have been my GB. He gave me amytriptaline and blew me off. It actually did make my abdomen quit hurting after a while and then I quit it. With that philosphy on medicine I didn't want him to take the stent out. If he would have done an ultrasound back then I wouldn't have had an 18mm (almost 2 cm) gall stone bc we could have dealt with it then. I explained to him how I barely touched my abdomen on the right side just below my ribs and how it hurt terribly and then I broke out in a drenching sweat and vomitted  extensively, ending in dry heaves. I felt a little better after that but it hurt for hours and still had abdominal pain that radiate around to midback on the right side and up to my shoulder for about 6 weeks after this.  

Also, when they put TPA (clot buster) in my drain it took about 15 mintues but then it burned like the worst acid and I screamed and cried for over an hour. I calmed down and called to chastise them for not telling me to take a strong pain killer before the procedure. The asked me to leave the TPA in for at least 3 hours to break up the biloma - the bile had jelled and wouldn't come out of the JP drain. I left it in till the next morning so that it could do it's job, what's a little more pain - right. When they took the JP drain out they put contrast in and it burned so badly I was yelling and could hardly stand to stay on the table. He extracted it and then it burned up my sternum for a bit. No one know why these two things burned but I would imagine when you have an open cut alcohol burns and when its closed skin it doesn't. It's hard to imagine having to deal with so much intolerable pain and the doctors can't even say they are sorry that it all happened. I just had MRI's done Monday to see about my nerves in my back, no results yet. If I talk for a few minutes my torso goes number. I have to take breaks when doing laundry, dishes, cooking ,etc and I use heating pads alot, it was constant front and back but I don't want to have to rely on that either. I still can't sleep an hour straight because of the pain and I can't lay on either side it has to be about 60 degrees with a bunch of pillows and heating pads. I sound awful whiney don't I? I'm really not, I don't know many people that would work as hard as I did and who had as high of a pain tolerance.

If anyone else has had similar issues or can tell me how things may turn out with the nerve pain, belching, peritonitis scar tissue pain etc.- please respond back.