I have had ongoing intermittent upper right side, flank and back pain for 2 1/2 yrs. Started on Pancrease MT 16, which helped the digestive problem but not the pain, I have recently had 2 elevated lipase levels(369 and 507). Ultrasound, CAT scans, HIDA scan normal, gastroscopy + Colonoscopy normal(2 ulcers). Am having a Endoscopic Ultrasound in Sept. Does anyone have any experience with Chronic pancreatitis? I don't drink and hardly eat, can't stand the thought of fat.
CP is most often caused from drinking but other things can cause it such as
Chronic blockage of the pancreatic duct
The enzymes help with the digestion of fat. They can help the pain in a few people but others they do not help. It is best if you stick with a very very low fat diet. You can also have bouts of acute CP so anytime you feel worse I would go to ER. EUS would be able to detect small changes in the pancreas which could diagnose CP. Some people opt to have puestow procedure and others total pancreatectomy with islet cell transplant when their quality of life is severely diminished by the pain of this disease. I would suggest finding a DR that specializes in CP for your treatment.
Thanks for your response. I had surgery(bladder lift and uterine repair) 2 1/2 yrs ago that resulted in periotinitis, sepsis, flagyl resistent clostridium difficile and neurogenic bladder, but have also had ongoing right side only upper abdominal, back and flank pain. So a person would figure that if I had any internal scarring from the surgery it would be below the belly button. Just had 2 elevated lipase tests in the last 4 months. I live in Canada and have been having a really hard time getting any dr. other than my GP interested in any other diagnosis besides Chronic Reoccurring abdominal Pain.and irritable bowel. How did you finally get your diagnosis? Do you have CP or SOD and don't they often happen together? I have been told the whole thing about low fat diet and pain management. I eat very little fat, even the idea of it makes me sick to my stomach. Being on the pancrease helps with the digestive issues alot, but there are still days where the upper digestive system is in slow down and the lower is in fast forward. I stay away from the ER, because anytime I have been hospitalized it has been only for pain management and no one wants to take on my case. I have been traveling to Calgary, Alberta to see a gastro. Socialized medicine makes it very difficult to get treatment for what they can't figure out. Any info or just experience in dealing with this would be greatly appreciated. I want my life back and a diagnosis so if there is anything they can do to slow down the damage it can be done. Thanks
Wow you really went through a lot! How do your drs justify the elevated levels? That could not be IBS!!
I have sod and both cp and sod often happen together. Right now I have 15 minute attacks of horrible pain a few times a month. I am pacing clutching my chest and gallbladder and sweating when they happen because it hurts so bad. It also goes into my back. I vomit from the pain then it interrupts the spasm and I am fine. I have a few days each month where there is mild pain and cramping but then it goes away. I am waiting for it to get worse before i get ercp.
One night my attack was real bad and I went to er because I would throw up and then in 15 min get another attack. The er gave me dilaudid ( narcotic) and that made me have another attack. Then they gave me ativan which stopped it. Its a muscle relaxant. Then they sent me home even though I told them something was seriously wrong they said ibs or virus. I went home and kept throwing up but then it turned into thick green bile. I went back and nurse took me right back since I was so sick. They took my enzymes and they were 10 times normal and admitted me.
My dr then finally admitted its probably SOD and sent me to DR Cotton at Medical Univ of SC . My GI said he was not comfortable treating it. I suspect thats why you are getting the IBS diagnosis like I was. He was so sure it was IBS. The dr he referred me to is the dr that brough ercp to the US in the 70s and he deals with only SOD and pancreatitis. He is one of the best. He is running trials in the states on SOD treatment and you get free treatment if you sign up to the group. Its called EPISOD. You can google it.
He told me he is sure its sod because everything else is ruled out, my enzymes were elevated, I had the typical pain and vomiting and I have bad attacks with narcotics. Narcotics cause these attacks in most everyone with SOD since they raise pressure in the sphincter. He did mrcp and I do not have dilated bile duct so I am type 2. He wanted to do ercp but I told him I would rather wait until it got worse. He said ok and gave me levisin to help. I have heard it only will help a few. I hate pills so I rarely take it. I can live with a few attacks a month. I just do not want to get pancreatitis or make things worse which unfortunately sometimes happens after ERCP. Some people get ercp and then have to keep getting it every few months until they cant anymore since nothing is left of the muscle. Some people start getting CP with their SOD after they have an ERCP. Unfortunately this is the only real test that can officialy diagnose sod and some pancreas issues. Its important to go to a dr who is very experienced and has done thousands and does many a week.
I agree about Socialized medicine. I was in Italy when I started having gallbladder pain. I went to er many times. They kept saying IBS and anxiety and giving me bronzapeam drops. Made me feel even worse since they are addicting. The even made me see a psychiatrist who said patient has fears of having gallbladder problem and its causing this. He told them I should be on drops 3 times a day lol. I finally went to us since they would not help me and got a hida scan which was abnormal and got my diseased gallbladder out. The surgeon said I had all sorts of adhesions and it looked bad. I was left with SOD. It was explained to me the SOD is what killed my gallbladder.
I would try to find yahoo support groups or facebook sod and pancreatitis groups and see if anyone is in your area and can recommend a doc. You really need testing done to see if you have CP or SOD . I have ran into people in other countries on these groups I just cannot remember who was treating them.
Hi there I have had 3 idiopathic cases of Pancreatities, all 3 times blood was elevated , however I have constant pain for 16 years. They removed my gallbladder as often it's ducts will get plugged, and then the acid backs up into either the pancreas or liver. Get the gallbladder out, it's another huge cause of cp, scarring of the ducts, stones, can cause life long pain. ERCP r not favored here in Calgary , as they can cause more damage making you sicker. Enzyemes really help with digestion, low fat diet, avoid triggers. There is a group on FB living with CP, there is 200 strong. My GI is DR. C Cleary, in Calgary .. Good luck Wanda
I know this is a post from awhile back but I hope you are doing much better and have found your doignoses. This sounds like a classic SOD case to me, I have had it a majority of my life but was only diagnosed 7 years ago. I have been through it all, tons of ERCP's, cutting, ballon dilation, temp & perm stent placement, in both my bile & pancreatic duct, and now I'm looking at major surgery. This horrible disease does prgress unforunetly, I used to get blockages have the pain & vomiting act up and know emmediately know what it was go back in for another ERCP and be better it would always last about a year before it scared itself shut again. Now it's completely consumed my life, I'm basically disabled and have spent the last year in and out of the hospital, struggling with SOD pain every day. I hardly eat, although I'm on a fat free diet it's hard to want to when it could cause me more pain, now looking at doing a transduodenal sphincteroplasty, I'm excited, but nervous. I haven't found virtually anyone that has had one, or a successful one I guess. I suppose if it wasn't they could be dead considering how horrible acute pancreantitus can be, it almost took my life more than once. It's scary but this is no way to live either, your situation sounds much like mine when this all started I once had a blood test and the dr told me to lay off the donuts (at 120 lbs) because my enzymes came back so high it was like I had eaten a whole box of doughnuts. I should have known then something was seriously wrong, but it was a long road to this diagnosis. Make sure you see a professional, a specialist that is specific for ERCP, and pancreatic issues even if you have to travel it's worth your life. I travel out of state for my surgeries because I have to and I wouldn't be alive without them and my continued care. Hope you are doing better and have got your diognosis by now.
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